| Name | Joe | |
| E-mail address | lensandcamera@gmail.com | |
Comments |
Hi...
55 yr. New Yorker. Diagnosed with SPS after 15 years of 'cluster migraines', falls, etc. Left hand spasms and essential tremor spread to left leg, lower back, then right leg. Achilles tendon, upper leg, facial tics leading to migraines... Abdominal pains, spasms, inability to eat or drink lots of stuff: coffee, chocolate, citrus, etc. Thyroid lump - 2 cm - took thyroid meds for couple of years to shrink. When the reflex hammer sprung my legs and arms straight out 2 years ago, had GAD test; bingo! Over the years to treat 'migrai es' was on large doses of Gabapentin (Nuerontin) 300mgx9day and Topamax (topirramate)6x 25mg a day... to stop 'migraines' took low doses of valium as required (5-20) and several other add ons - depakote/divalproex and verapamil - as mch as I could take without falling asleep with the other stuff. Also took a ppi for stomach problems - omerprazole and flomax for prostate pain/swelling. Broke up pills into 3-4 times a day. Also taking Androgel / testosterone... from my endocrinologist tracking my thyroid and other hormone levels. Was getting into really bad shape - unable to work, using cane, etc. IVIG tried first (5 day infusions) - worked for a few months. Switched to Rituxin. Walking and moving around almost normally; use maybe 5 mg. valium for remaining muscle knots. Terribly tired; work and go home to stretch out, watch TV, read; repeat. It would be of great value if this UK group or NORD in USA would set up patient registry to share treatment/drug dosages so various people could try out what works with other SPS sufferers. A spreadsheet with drugs, type of SPS, time from diagnosed or how long a particular drug works, etc. Joe | |
| DATE | Monday, December 28th 2009 - 11:40:24 PM | |
| Name | Louisa | |
| E-mail address | Louisa-88@hotmail.co.uk | |
Comments |
hi my names Louisa and im not sure if this is what my mum had or not. We have been told it was encephalo-myelitis with rigidity and myoclonus. My mother started of with a slight back ache, that turned into a virus, that turned into leg spasms which were very painfull all over her body and this all happened within 6-8 weeks and she sadly had a heart attack in hospital whilst they were trying to find out what it was she had, she was only 45 and had never been ill in her life. she had 5 children 28,20,19,18,17. the day before she had the heart attack she was told she could come home soon. please tell me if this is what she had and would it have been treatable as the hospitals turned her away 3 times saying that there was nothing wrong with her and that it was all in her head. | |
| DATE | Tuesday, August 25th 2009 - 08:55:04 PM | |
| Name | Lee | |
Comments |
i am a man with SPS, i am 35 now and have NEVER had high or low GAD results, i have read many times that people say that you have to have high or low anti-gad results to have SPS but this is UN-TRUE, 65% of people with SPS dont have high or low anti gad results, and that is writen fact! it can take years before you find out that you have SPS even if you were told that you have it in the first place! they still need to look into all other possiblitys like depression, functional disorders etc, but this is what we all have to go through and its hard and the doctors will make you feel like you are making things up or there is/was a problem in your life that NOW has brought on this problem but you should all keep your heads up! never let this get you down, i know it does its happend to me, i have been there and thinking of whats happend for me to just be ill for no reason?, why would my body start hurting for nothing? why why why.... most times its not you its THEM they dont know WHY and as its so hard to find out why they find it easyer to look at the easy options but in the end they have to look at the truth!!
i had a good job 2 houses a car motor bike and a very happy life before one day just having a shower and then it felt like someone hit me in the back of the head with a baseball bat and then that was the start of things to come! in and out of hospital for 18 months more time in than out, then 6 months into the illness i lost the function of walking and using my left side.. this was the biggest blow i had had, my life was now changed forever! but know one was intrested in that they just kept doing there drug tests on me like a gunnie pig and the only thing that helped me was the diazapan. starting on 20mgs a day going up very fast to 100mgs a day still have spasams very bad and watching the nurses just not having a clue what to do, so just do nothing! lol i remember after spending 9 weeks in hospital and them telling me that i am not allowed to walk again because of my left side and i need a wheel chair (they took my crutchs off me) then discharged me without any way of doing anything because i had no wheel chair! i had to get one from the red cross untill they got me one (6 weeks later) then i got an electric one as well. i was asking and asking for help to try and walk and get some use in my right arm again.. but nothing, so i started myself had a few problems like broke my hand falling over lol .. but i started to get more positive within myself as i tried, even thow i was not always good. but my new found self esteam made the doctors think that i was better in a way? so now started to reduce my drugs etc. this is what i was asking them to do!! but still no help with walking etc and now willing to let me have so counciling, but this is what they want not when i wanted to have it to help me understand whats happening to me and why i had lost everything that i took for granted... doctors will always do what they want to do...... sorry if this feels like a rant but just want people to understand that not having high anti-gad or low DOES NOT MEAN ANYTHING AT ALL people with diabities have high anti gad! but not SPS, i do not care if anyone disagrees with me here because i know its true! i have one of the best prof's in west midlands and he was the one that toled me the figures and gave me the web site were its tells you! i have also been to london and seen Prof Brown the guy who has writen most of the info on SPS thats on the web and he also said the same! its so much hard work having SPS and understanding it and then living with it! i just wish that the doctors would understand what we go through and offer help. i would like to have had it when my life was taken away from me, if it was not for family and friends i think i would have toped myself by now! but just over 2 years down the line and things are sorting themselves out. now retired which makes me laugh now (being 35) but at the time i was not! also still fighting my insurance company to get my critical illness to pay out but just about to find out if it will pay or if i have to fight them. but just sod them as i am going off on holiday in 11 days.......yes!! bye everyone and speak soon | |
| DATE | Monday, August 17th 2009 - 09:48:54 PM | |
| Name | Michelle | |
Comments |
Hi,
I am 31 and live in Perth, Australia and rely on my mum for support and I am bound to a wheelchair basically when I feel well enough I have a walker with four wheels and a seat thing on it but if I feel strong enough to walk it is aided by my walker or by furniture and only inside. I have read most of your stories and I just can't seem to find a support group in Australia. Like most people I have Type 1 Insulin dependent diabetes and got that at 21 about a month after my 21st...though at 16 I got flu like symptoms and was home from school and decided I'd like a bath and got there as I couldn't really walk and luckily for me mum rang and I couldn't get out of the bath and couldn't answer the phone and she rang a couple more times and cause I didn't answer she came home and to my rescue, we had a towel rail above the head of the bath that I was using to try and lift my body out of the bath and by the time I was out curled up on the bath mat she was home calling out for me and took me to the GP who said to take her to hospital straight way and they diagnosed me with Viral Meningitis but I have my suspicions, I recovered from that and had physio and finished school and went onto work then at 22 I was basically bedridden and spasming and my mum convinced me to go to the hospital which had sent me back home with Valium twice before and the third time I was that rigid ambulance officers had to get me out of my mums car in which I was in the front passenger seat and extract me out the passenger side back door onto a hospital bed outside emergency spasming. Mum said if they didn't give me something that worked she was going to just leave me there and luckily after almost every doctor had no idea what was wrong an understudy Neurologist recognized the symptoms from somewhere and I was admitted into the Neurology ward for 3 months for the first 2 weeks I could not get out of bed and was the hospitals rarity so I got visited by every student doctor going through the hospital I think. I was the enigma and they reluctantly gave me prednisalone to get me out of bed as that is what I had when I was 16, but diabetics aren't allowed it generally but they gave me a small amount and I got out of bed and stood though my left foot was clubbed due to the spasms. I went through all the tests and every time they gave me an MRI I reacted to the awful sounds that it makes so the pictures are blurred and after lying there strapped down and freezing trying to calm myself each time it just got too much and I came out in an absolute mess. The only thing that knocks me out is Panadeine Forte so the next solution was to schedule it and then give me the tablets so I would sleep through it but it didn't work cause I had to wait and woke up as they were ready for me *sigh* Anyway, they put me on Baclofen and Clonazepam which stopped the spasms and I went through intense physio as an in patient and an outpatient and got my life back for near 5 years and then in 2006 it started up again and I have been fighting it since. I have always been on Baclofen and Clonazepam tablets even now but now I take 25mg of Baclofen and 2mg of Clonazepam 3 times a day. I like so many of you have good days and bad days. I am fortunate that I have a fantastic employer and I can still work and mum takes me into the office on Tuesdays and Fridays and the rest of the week I work from home. When I spasm it is my legs and lower back which goes into Lordosis and I have to brace myself if I am alone or my mum can help me by just watching and making sure I don't hurt myself anymore and unfortunately that is all anyone can do. I have tried a lot of alternative therapies and been through all of the immunological things like IVIG, Rituxumab and plasmapheresis...I go to regular massage appointments and chiropractor as well which I think help keep my body better yet I can't walk, drive or stand in the shower I need mum to help me in and out of the shower. I see my neurologist soon to try something else I think. I'll keep you posted. | |
| DATE | Monday, May 25th 2009 - 10:22:55 AM | |
| Name | Michelle Gunn - Perth, Australia | |
| E-mail address | blue4277@gmail.com | |
Comments |
Hi,
I am sorry but I just found this site so I'll read it all and post another message later. | |
| DATE | Friday, May 22nd 2009 - 10:03:04 AM | |
| Name | Lin | |
| E-mail address | lin.newbold@sky.com | |
Comments |
test | |
| DATE | Monday, December 15th 2008 - 06:41:28 PM | |
| Name | Lin | |
Comments |
test | |
| DATE | Monday, December 15th 2008 - 06:40:07 PM | |
| Name | CJ | |
| E-mail address | cjohnston06@hotmail.com | |
Comments |
Hi,
I'm a 24 year old female from Scotland. I was diagnosed with type 1 diabetes 2 years ago. For almost a year now I have been suffering from speech problems due to stiffness in my neck and tongue. I found out today I have levels of GAD antibodies over 600 but a clear MRI result. I have an EMG appointment on friday and my neurologist suspects a rare form of SPS, I had never heard of this before today and I'm feeling a bit shell-shocked!!! I have had no stiffness anywhere else which is really confusing after reading all your stories! | |
| DATE | Monday, November 10th 2008 - 07:09:36 PM | |
| Name | erica | |
| E-mail address | ericamoylan@aol.com | |
Comments |
hi does anyone have sms without anti GAD my mum does We are constantly looking for different treatments for her she responds well for a time then they dont work. what helps others? she is taking sodium valporate, baclofen and diazepam at the moment and was good for a few weeks but she is deteriorating rapidly again so i would be very interested to hear from others. | |
| DATE | Sunday, November 2nd 2008 - 12:51:57 AM | |
| Name | geoff | |
| E-mail address | geoffcarp1@aol.com | |
Comments |
i have had stiff limb (stiff in all the wrong places the mrs says lol) i read with interest about the long term effects of diazepam posted on here, i take 80mg of diazepam every day(spread through the day) its a great help and unlike liz i dont take a drink in the morning unless im not going anywhere because the interaction of diazepam and alcohol is like being on another planet and sometimes that really aint so bad lol | |
| DATE | Monday, October 13th 2008 - 05:51:55 PM | |
| Name | Debbie | |
| E-mail address | stiffperson@stiffman.org | |
| Homepage URL | http://www.stiffman.org | |
Comments |
URL corrections:
Support Group: http://www.stiffman.org/support.htm. Website: http://www.stiffman.org I left out the triple www in my previous post. I apologize. ;-) | |
| DATE | Wednesday, August 6th 2008 - 05:12:43 AM | |
| Name | Debbie | |
| E-mail address | stiffperson@stiffman.org | |
| Homepage URL | http://stiffman.org | |
Comments |
Hello,
I am from the US, diagnosed with SPS in 1994 by Dr. Hiroshi Mitsumoto, following four years of symptoms...18 years of living with the most popular, not by request, syndrome and insulin-dependent diabetes(IDDM)combo. ;-) It is my understanding that some are looking for a support group. I belong to an Internet email group in the US that is open to anyone. Information on how to join is at this link: http://stiffman.org/support.htm. I have a personal website: www.stiffman.org. I hope the online support group or my website may be of help to anyone who is interested. May today gift you with one memory worth reliving, one thing to bring a smile, the chance to share love, and the wisdom to recognize opportunity. | |
| DATE | Wednesday, August 6th 2008 - 05:02:17 AM | |
| Name | Dee | |
| E-mail address | easttexangel@hotmail.com | |
Comments |
Hi there , I am from TX, but live in egypt, and have sps since 2005, took me a long time to get my meds right and
walk fairly well. will have my gaba tested when i go to the doc in tx. I am glad i am not the only one to have this. as I thought it was all in my head. thanks everyone for sharing your experiences , so I dont think I am crazy... take care. at least i did get to go to london, and Ireland while I could still walk good by my self. July,20, 2008 | |
| DATE | Sunday, July 20th 2008 - 10:34:09 PM | |
| Name | Tony | |
Comments |
test | |
| DATE | Tuesday, June 3rd 2008 - 07:15:28 PM | |
| Name | gordon | |
| E-mail address | emgeemidget@hahoo.co.uk | |
Comments |
Hi folks as a newby I would like to say three cheers to Liz for all her hard work.
I am a 70 year old sms sufferer and seem to have got off lightly so far with only muscle spasms in my legs and to date about twenty falls so far and no broken bones but some very sore elbows and wrists. I am on ten mill of diamazepam three times a day that seems too control the spasms. and walk with a four wheel rollater that fold in the back of my car very nicely I use a stick at home. Gordon. | |
| DATE | Sunday, June 1st 2008 - 07:50:26 PM | |
| Name | Viv Pritchard | |
| E-mail address | vivpritchard@ntlworld.com | |
Comments |
Liz, I don't have SMS - I have generalised dystonia - but I'm really worried about your intake of diazepam. I've been prescribed it for 38 years, as a muscle relaxant, but in the last, say, six years its paradoxical effects have literally crippled me, to the point where my leg muscles are completely rigid (right leg) and they never relax: my leg is permanently bent, and it hurts. This is not dystonia, but the long-term effects of diazepam. Please have a look at www.benzo.org.uk and look at the list of symptoms down the left-hand side. You'll find anxiety there too. I wish you all well, but am frightened for you all. Viv | |
| DATE | Tuesday, May 13th 2008 - 12:06:57 PM | |
| Name | LIZ Blows | |
Comments |
Since the web address has changed, I have not received any e-mails from anyone other than friends and family. Is there anyone out there who can explain this? Please, please get in touch if you have any thoughts on this, as it is driving me mad!
Waiting in anticipation. Liz | |
| DATE | Tuesday, February 19th 2008 - 01:36:18 PM | |
| Name | ben | |
| E-mail address | ebj_d@hotmail.com | |
Comments |
hi everyone.
i'm just trying to figure out what on earth is wrong with me. my doctor has no idea. a brief history: at 17 I had an attack of generalised stiff muscles with a lot of pain but no spasms.it lasted about a month. then i had the same thing again at 21. at 25 i had another attack where my muscles stiffened up over a few days and became extremely painful. this time it remained chronic. that was 8 years ago. also i remember as a kid that if i gripped something tightly i couldn't open my hand up and i always had a lot of pain after exercising. i was diagnosed with fibromyalgia but my problems just don't fit that syndrome and i seem to be losing function and becoming stiffer (fibromyalgia is considered non progressive and people often do well with it). every muscle in my body is stiff and i have alot of pain. i have no spasms and none of the fears that people talk about and no falls. i also don't react to loud noises like i've read about with others. i'm anti-gad negative and my emg shows no abnormalities. in fact no test shows any abnormalities.all muscles are stiff except i don't get pain in my lower back or stomach. i used to be able to go for long walks (with pain) but now i can only amble a few blocks. i'm trying diazepam and baclofen but they certainly aren't helping (i'm only on a low dose still due to tiredness). the only medication that helped was guafenesin which is used for fibromyalgia. it completely relieved the muscle stiffness and pain within half an hour but gave me severe depression. my neurologist said it might be sms but she has no idea. she just left me with the parting words "i don't think you have a severe condition because you can still walk". i figure this is probably the most knowledgeable place in the world on sms. does anyone have any ideas? thanks ben (melbourne, australia) | |
| DATE | Tuesday, September 4th 2007 - 04:24:24 AM | |
| Name | maux | |
| E-mail address | mauxkelly@gmail.com | |
Comments |
Hello, my stiff ones. I invite you to join the SMS group at http://brain.hastypastry.net/forums/showthread.php?t=8873.
SMS should not kill your dad if the symptoms are properly treated. VALIUM! C'mon by. Looking forward to seeing (!) you. The was a yahoo group once here in the USofA; now gone. We've got to start anew. Everyone is invited, even UK'ers. | |
| DATE | Monday, August 20th 2007 - 03:23:39 PM | |
| Name | Liz | |
| E-mail address | liz@blows.fsnet.co.uk | |
Comments |
Just a couple of things.Firstly if your anti GAD reading is high, it does not mean your SMS is worse than someone who has a lower reading. Once diagnosed it will fluctuate.
There are different varients of SMS. There is no test to determine which varient one has. It is a case of 'suck it and see'. Your neurologist will monitor your progress over time, but even then it may not be clear, which is why no-one can give an accurate prognosis. I am sure many of you suffer with unwarrented anxiety attacks. Unfortuately it is a part of SMS. When the two enzymes GAD and GABA have a bit of a fall out, it results in an anxiety attack. It happens for no apparent reason. However if you can avoid (as if we can) stressful situations, it can help a little. Mornings are generally the worse time for most of us. My solution to this problem is vodka.( I can almost hear the disbelief - and perhaps a little disgust). My consultants know about this, and have no problem with it. For the record, I do not advocate becomming an alcoholic, but one shot in the morning works for me. The spasms in my lower back are virtually gone within about 5-10 mins. Most of the UK group either use alcohol or cannibis for pain relief. The membership of the support group is confined to the UK and Ireland simply because there are not enough hours in a day for me to extend it any further. I spend so much of my time doing SMS related things, I sometimes wonder if there really is a world outside my study.I have sais this before, but if anyone outside the UK would like to start a support group, then I would be only too happy to give any help I can. But be warned, it's hard work. | |
| DATE | Monday, June 11th 2007 - 06:05:14 PM | |
| Name | Kimberly from US | |
| E-mail address | kimberly28_2001@yahoo.com | |
Comments |
I posted something regarding my father, i wanted to post something about myself, hoping someone out there might have an idea whats wrong with me. I have no medical or money to seek any doctors or tests, so i am at a loss, I dont think i have what my father has, SMS, But i have alot muscle problems. Any response or advice would be appreciated.
Need help to try to find out what is wrong with me I am 33 year-old Female, I need help so bad, I am doing anything to seek the right answers. I am going to try to briefly tell my problems along with my past medical hoping maybe someone; the right person will maybe have an idea how to help me. I have no money to go to the doctors anymore, I have spent so much over the years; I have no more to spend. I will start with when a lot of these problems started. Along with possible “traumas” or things that might have contributed to my symptoms: When I was 5, I started passing out a lot. Even would stop breathing. I had headaches really often. The headaches progressed quickly, to losing my vision at times, passing out, losing speech, feeling numbness in my face and hands. Was told when these things happen, I would get real pale. I felt I would die at times, I was confused and scared. I even thought as I got older that I would go blind, sometimes these things would last anywhere from 5 minutes to hours. But it would take days to completely get over the sickness it put on my body. Sometimes the headache would go down to a regular headache for weeks at a time. This would hit me all sudden most of the time, didn’t matter what time what day. At times would come on gradually. My parents took me to the doctor, if I passed out in the store, I would go by ambulance and have 1 week stay in hospital with every test being done and nothing, at all would show up. Only for the first couple years added with all this I would also stop breathing, and even had couple seizures. Those things happen when I was younger than 5 and don’t even remember them. The doctors in the 70’s didn’t believe in Migraines. I have always had a stomach problem with this; I would get very sick at my stomach and throw up a lot of the time. This went on pretty severely for several years of my life. Seem to get better when I was 13 and 14. It all still happen but not as often and not as bad. During the age of 6 thru 10 years old I had no physical trauma, I had some emotional as far as my parent divorcing and my 3 brothers raped me a lot from age 6-10 however, could never see a connection to this being why I was sick all the time. That I knew of, I had never fallen, hit my head or anything. A lot of my symptoms were in my face, pain in my eyes, losing the vision, severe headache etc…………………. As I got older, it got somewhat better. From 15 years-old to 18 I was doing ok, had pretty bad episode hit me at 15, but was also told at the time, my hormones were not in balance. I had 4 miscarriages up till I was 18. I was never told why I lost those children. Till about 24 years old, these episodes still came but again, not as often as when I was younger. I learn to deal with some of the symptoms. I ended up having 3 beautiful kids. I felt very lucky, for while not knowing what was wrong with me, I didn’t think I could have any kids. Right after having my last child, I was diagnosed with edrimtosis, I had it for 2 years, telling the doctors something was very wrong, but because I was so young they wouldn’t listen, until it got real bad. Another thing that might be key, is I had always had bad kidneys, all my life. When I was really young I started having kidney infections pretty often, up until I had my full hysterectomy at age 25. I still get them, but near what I use too. Also at 25, I was in a pretty bad car accident; I rolled a truck twice and was thrown 20 feet into a field out the window of the truck. Might I add, age 16-to 19 I was with a guy who beat me severely, he would ram my head into walls, etc……..I mention this because my migraines and other symptoms have came back and back worse than ever before. Since the wreck, I have injuries, that won’t show up on x-ray, MRI or any other tests. So the doctors I have been too, say if they can’t see anything, they can’t fix It., I was diagnosed few years ago with Fibromyalgia. I can’t get anything done, no help, no relief, nothing. Some days are better than others. I also broke my leg at 25, (25 was bad year for me) I got a plate and 8 screws in my ankle, this year, 2 of those screws have came out and are floating in my leg. I have no money, no way to get help,. So I am dealing with this as well. Here are my current symptoms. Most which I had when I was 5 and older just more often and severe now. From the accident I seem to injure all on my right side of my body, right side my back, neck, and scapula. Again, most the eye, head and numbness I have, I had from age 5. Constant headache every single day, some days bare able some not I get numb in my face and hands a lot I lose my speech at times (this doesn’t happen as often) I have an injury to my neck from accident; my neck burns a lot, aches, My scapula gets these knots, they burn, and ache More my neck hurts and scapula the more my headaches hurt. My vision is blurred at times; my eyes ache and hurt especially during bad headache I am passing out more and more, Just 2 months ago, I passed out in the store. Hadn’t done this since I was really young. Now, I get that “feeling” of passing out a lot. I feel drained, tired all the time, but I also don’t sleep much or get good sleep. I am not active anymore, since my leg and the screws and other problems I can’t. I can’t remember things; I forget a lot of things now, cant focus Light, light has ALWAYS hurt my eyes, I hate the sun and everywhere I go I have my sunglasses, I even put them on in my house at times. Any light hurts And now, of all things, and I know this is going to sound unbelievable, but I have teeth problems, all my teeth are losing the enamel, the dentist said only thing would do this is if I sucked on lemons a lot, I not only don’t do that, I don’t even eat lemons or use them in anything at all. The dentists are puzzled. My mother had something like this, where she lost her enamel on her teeth and quickly lost all her teeth later. She doesn’t remember what they said she had. Now, no money and no way to get this fixed, I have 3 teeth that are bad and I am thinking this contributes also to my headaches. I am 33 and just fallen apart, I am not sure if I mentioned everything, but this is the basics, and I am so miserable, I need someone’s advice or help. I have 3 beautiful kids who I love dearly and they are so bothered by having to see their mom like this. I not only want to get better for myself, but for them also. If I can’t get whatever this is fixed I need relief. Doctors keep also looking at my age, saying “oh you are young” this upsets me, it doesn’t matter what age someone is, age don’t relate to pain or problems. Another key thing, my father, he is very very sick with Stiff –Man Syndrome, this is a very long story. Stiff man is not well known to people, I don’t even know if it transfers to family members, my dad has suffered so much. I have also, watched my kids very closely to see if they appear to have any of my symptoms, my youngest has had kidney problems, she also has headaches pretty often, but so far none of the other things like myself. My oldest, has passing out, she also has headaches but not constant. She went to a heart specialist because they thought they heard something but she ended up with an irregular heart beat. My son, he gets headaches but not often but when he does, they are pretty bad, again, none of my kids get the numbness, vision, etc…..I pray to God often to please, don’t have what’s wrong with me transfer to my kids. Whatever is going on with me, has been with me nearly all my life, the truck accident, the few other things, I believe just added to my problem (whatever it is), I need relief, to hurt everyday starts to get to a person. I have been thru tests, but nothing shows. I have told the doctors, just because nothing shows doesn’t mean that something isn’t there or that I don’t feel this. I fight it a lot, like when I feel sick, or feel I am going to pass out I will fight it with all I have. I have two indentions on my head, from when that guy beat me, not sure if that means anything either. I have tried and tried to help myself, figure this all out. I don’t drink I don’t do drugs, never have. I will admit I don’t eat good. I can’t sometimes. Well this is my somewhat story and what I am going thru, if anyone, anyone at all has any advice, anything that could help me, you don’t know how much I would appreciate it. I think with the combination of the problems I already had from age 5 with the headaches etc…..then, being beaten like I was , along with the truck accident along with my teeth and ankle (screws and plate) its all just taken over my body to an extreme. And with no money to see a doctor, no money to try to keep my health in shape is why I am so bad now. I pray to God every day to help me. I know he’s watching over me and there’s a reason for this, I just don’t see the reason yet. What is really scary, is to watch my dad suffer and dying with an unknown thing that’s taken his body over. I just don’t know what else to do. One other thing to mention, from 14 I was on my own, actually lived on the streets for while at that time, meaning I didn’t eat much, couldn’t see a doctor when I needed too, etc…..not sure if that has anything to do with anything, because even before this I was having problems, but I am sure it don’t help to not be able to eat right, have any food, have the right check ups or medical care a person needs. Nearly all my life I took care of myself, as you can probably guess my mother didn’t watch me or take care of me. Even when I was little, if I did get sick, and needed to go to the doctor, she got real mad because it cost her money, sad thing was my father at the time made a lot of money at his job, and she just didn’t want it spent on me. I feel in my heart, if I had been able to find the right doctor, when I was younger I might have known now what is wrong with me. Thank you for reading my letter and I am sure if u are on this site too, that you are probably going thru something yourself, I pray and hope you get better also. Sincerely K | |
| DATE | Wednesday, April 18th 2007 - 02:21:22 AM | |
| Name | Kimberly | |
| E-mail address | kimberly28_2001@yahoo.com | |
Comments |
My father has SMS. He has been documented to have the worst case ever seen in the US, We live in Texas in the US. I am seeking further help for my father, he is going to die soon, I would like to chat with people who have SMS and/or people who know alot about this. I am at a loss. I need help, please, i cant lose my daddy. | |
| DATE | Monday, April 16th 2007 - 04:07:45 AM | |
| Name | De | |
| E-mail address | de_babb@yahoo.com | |
Comments |
I am wondering with so few ever being diagnosed, why is membership to this site limmited to the UK and Ireland? Are there more cases there than other parts of the world? How many would you say? What are the treatments there? What does membership to the site include?
Thank you | |
| DATE | Monday, January 1st 2007 - 07:10:59 PM | |
| Name | Liz | |
| E-mail address | liz@blows.fslife.co.uk | |
Comments |
Hi Fellow sufferers
1) Why do so few neurologists know about SMS? 2) Why is there so little research being carried out? !) Because of the rarity of the condition. 2) Because funding is usually turned down. Don't get me wrong, I don't object to the big charities getting funding. It just seems as if SMS is not a condition the powers that be deem to be of much impotance. A plea to anyone reading this is a request to raise awareness, anywhere and everywhere - that includes the medical profession too. Please feel free to give this web site address to anyone who may benefit from reading it. Here in the UK we get our stories into magazines and newspapers as often as possible. Having said that, in the UK and Ireland we have charitable status. As I write there are 93 members in the support group. No doubt there are more who don't have access to the internet or are not well enough to enable them to find the information.There is a support group in Germany too, but as yet I have not contacted them. There is also a support group in the USA, but despite many e-mails, I have not had a reply. You could be the one to start a support group in your country. If you feel inclined to do so, but do not know where to begin, then e-mail me. Each time I look on this message board, I intend trying to answer questions people ask. If there we more hours in a day I would. Perhaps 2007 will not be as hectic (although I doubt it) but I will try. I look around my office at all the things that still need to be done, and wish I had a secretary who could put things in order for me. Oh well, moans and groans over with. I will leave you all with my sincere wishes for a healthier Christmas and even healthier 2007. Luv Liz | |
| DATE | Saturday, December 16th 2006 - 06:53:36 PM | |
| Name | Ildikó Magyar | |
| E-mail address | magyarildi24@yahoo.com | |
Comments |
Hi Everyone!
I'm writing from Hungary (Europe). My mother was diagnosed with SMS yesterday. Having read your comments, it seems that three years have to pass in all continents for the doctors to be able to diagnose SMS. The symptoms are classic (stiffness in the back and severe spasms and of course really really serious pain) and I'm going to share with you all the medications my mum is going to get. All the best for you! ildi | |
| DATE | Wednesday, November 15th 2006 - 10:10:52 PM | |
| Name | Joe | |
| E-mail address | fyrmedic1498@sbcglobal.net | |
Comments |
My stepdaughter,15 years old, was diagnosed with SMS 3 weeks ago. Started out thinking that she was just having charlie horses and possibly only needed Potassium through an IV. She was released from a local hospital and we called her nerologist said if they came back to come in right away. 2 days later we were making the 2 1/2 hour trip to the ER in Childrens Hospital in Milwaukee. He did several test and came back with the SMS diagnosis and put her on Dialantin and Valium twice a day. We did research the best we could since only 1 in a million have this to all find the same result. Things seem to be going fine, she got back and somewhat stronger to make it to the homecoming activities and dance. Three weeks later she started to complain that her back was starting to stiffen up and ache and that she only needed a chiropractor. We ended up going to the local ER in which she was admitted to try and relax the spasms, but to no avail. By the next day they were all through her back and into her next. They got her stable and airlifted her to Milwaukee Childrens Hospital. Now she has had tightness from the spasms throughout her back, neck and chest to where she stops breathing for 30 seconds at a time. She started IVIG on Friday, 10/13. The next day she rested off and on but Sunday morning we came in and she had an excruciating migraine and the start of a fever. Cat scan was negative and doctors say that they were probably spasms in the brain. We have calls out and looking for anyone that can help come up with answers or medications that work. Most of the proression we have seen have been decades not weeks or months. | |
| DATE | Monday, October 16th 2006 - 04:15:24 AM | |
| Name | Tracy | |
| E-mail address | Tweidlich@satx.rr.com | |
Comments |
GAD is elevated and the EMG shows some issues. I will get the details at my followup on 9/29, but at least the diagnosis is confirmed. Does anyone know if SLS turns into SMS? Has anyone learned what sort of progression timeframe is to be expected for us?
So many questions, so few answers..... Tracy | |
| DATE | Saturday, September 23rd 2006 - 04:57:44 AM | |
| Name | Tracy Weidlich | |
| E-mail address | TWeidlich@satx.rr.com | |
Comments |
I am anxiously awaiting the GAD antibody results. EMG is scheduled for 9/22. I am hopeful that if the GAD comes back positive I can be spared the EMG. I had one when I was diagnosed with Myasthenia Gravis in 2001 and I did NOT enjoy it. (MG is in remission now)
I noticed weird things happening over a year ago and thought it was the MG again. My then neuro blew me off since I could not produce symptoms in her 10 minute visit. In Jan 2006 I began falling over and my legs would freeze in place making it impossible to move. A marching action with something/someone to hold onto would often help me get started again. Parkinson's (along with a few others) was mentioned although my symptoms are more of late stage Parkinson's symptoms. About a month ago, I finally saw a psychiatrist to rule out an anxiety disorder because I had a brand new phobia of staircases. I would freeze anywhere near one. I started taking the .5 mg Xanax he prescribed and instantly noticed an improvement in my gait. My toes did not curl as badly and I could walk MUCH better. My dizziness was decreased also. (etc etc) This prompted some research, which lead to SLS/SMS. Now the testing. I have other autoimmune issues including Type 2 diabetes which is now weight and diet controlled, Hypothyroidism, and Myasthenia Gravis. It just sounds tooooo coincidental. I am very curious to compare some of the symptoms with folks, as I am trying to weed out what may be SMS/SLS and what is a result of damage from a B12 deficiency also discovered this past year. I would love to hear from others. Thank you in advance. Tracy in San Antonio, Texas, USA | |
| DATE | Tuesday, September 19th 2006 - 07:56:37 PM | |
| Name | Del | |
| E-mail address | jessygaff_pugs@yahoo.co.uk | |
Comments |
Hi just a quick note to say I have a new email address
Cher Del | |
| DATE | Wednesday, September 13th 2006 - 09:46:12 PM | |
| Name | De | |
| E-mail address | de_babb@yahoo.com | |
Comments |
Hello, Im 36 year old female. I live in Ohio and have recently been diagnosed with sms I was positive for the GAD antibody and I am currently being treated with baclofen.
I feel pretty good on most days...the stiffness is only overwhelming after sitting for a long period, or when I have not taken the medication on time. I have had a few spasms...only one very severe, but no more since medication. Looking back I Know I have had this comming on for at least 3 years...I can recall the onset of stiffness with stress.....only when it was getting bad did I seek out doctors attention...I had a diagnosis within 3 mos. Unlike the years I have read that many of you waited for diagnosis. I would like to know how does this disease progress, and do people live a regular, pretty normal life. Is this like MS? Will diet and exercise help? Also does anyone think that stress or anxiety was a footstep in bringing this disorder on? | |
| DATE | Thursday, August 31st 2006 - 04:19:11 AM | |
| Name | Mike | |
| E-mail address | mjkhus@aol.com | |
Comments |
I have felt very lonely since learning that I have SPS. My story seems to be typical. Many different doctors, tests, neurologists, etc. over a 3 year long period until 12/01/2003 when I was diagnosed. It is comforting to know that a group like this exists. Dr. Kevin Biglan of Johns Hopkins made the diagnosis, but also suggested that it might in fact be Stiff Limb Syndrome. My anti gad anti body results are over 165000. My symptoms seem to be localized mainly in my right foot and leg, and the left foot only. If anyone has this diagnosis would you care to correspond with me?
Mike | |
| DATE | Monday, April 10th 2006 - 03:38:35 AM | |
| Name | Liz | |
Comments |
OK I know it's February, but it's the first opportunity I have had to say Happy New Year. Please let it be a healthier one too. Talk to you later.
ps. This is my second attempt to put this message on. If it works, then I have pressed all the right buttons! | |
| DATE | Wednesday, February 1st 2006 - 05:01:37 PM | |
| Name | toni | |
| E-mail address | spcloudy718@aol.com | |
| DATE | Sunday, January 15th 2006 - 03:01:41 AM | |
| Name | Jody | |
| E-mail address | bodicea2004@yahoo.co.uk | |
Comments |
Hello to all.
I just wanted to offer some proverbial "light" at the end of the tunnel. I am now in my late twenties and was diagnosed very promptly with SMS in June 2002. I was put on IVIG and since May 2004 - I have been living a fit and healthy life with no further hospitalization. I "just" take 10 mg of diazepam a day. I know I am lucky to have responded so well to the medication but I wanted to let others know that it can work ! Best wishes to anyone who reads this. Jody. | |
| DATE | Wednesday, November 30th 2005 - 04:25:21 PM | |
| Name | Charles Legg | |
| E-mail address | charlesrlegg@onetel.net | |
Comments |
Liz:
Thanks for your feedback. No, I haven't had an EMG, just lots of reflex testing. All: My current diagnosis is Psychogenic Movement Disorder and I'm scheduled for 4-6 weeks of in-patient Cognitive Behavioural Therapy at the National Hospital for Neurology and Neurosurgery to correct this. Has anyone else out there been through this? Charles Legg | |
| DATE | Monday, September 12th 2005 - 10:52:14 AM | |
| Name | Steve | |
| E-mail address | stevebroache@mac.com | |
Comments |
Liz
thanks for trying to reply to me. The address I gave was legitimate, but maybe this one will work better. I did get some encouraging feedback about driving from Tanya down in Australia. And,,,the Specialiist at Johns Hopkins Hospital Neurology gave a call yesterday to say that someone had cancelled an appointment tomorrow, so I don't have to wait until October 11 for a first meeting! Thanks to all Steve | |
| DATE | Friday, September 2nd 2005 - 02:08:31 AM | |
| Name | Liz | |
Comments |
Hi All
Firstly, a message to Ed Buffington. If you are in Germany, there is a support group. I am not sure of the address, but if you get in touch with Prof H M Meink at the Heiidleberg Institute, he will be able to give it to you. Charles Legg, you are not alone in having SMS symptoms but no raised anti GAD. Have you had an EMG? I have spoken to or had e-mails from a number of people in your situation. Steve. I tried to reply to your e-mail, but it won't go through. Do you have another address? Best wishes to one and all. Liz | |
| DATE | Monday, August 29th 2005 - 03:15:15 PM | |
| Name | Steve | |
| E-mail address | stevebroache@comcast.net | |
Comments |
Hello anyone -
I recently diagnosed as having SPS, confirmed by GAD level over 100 (normal is < 1.5) and EMG. I am enjoying everyone's feedback. Mine is the first case any of my doctors has seen. I have scheduled a session with a Johns Hopkins Hospital SPS specialist, but she can't see me 'til October. In the meantime, my neurologist has me taking 30 mg valium per day, which has given me a radical improvement. Does anyone have any insights on how SMS would affect driving abilities? Thanks, Steve | |
| DATE | Sunday, August 14th 2005 - 08:56:33 PM | |
| Name | Tanja | |
| E-mail address | Tanja258@aol.com | |
Comments |
Hi,
a couple of months ago I was diagnosed with SPS. Up until then I had only spasms. Now, I am stiff almost every other day pretty much all over my body. Since this is a progressing disease I was wondering if anyone would like share his or her story with me. So far, I have never spoken to anyone who actually had the disease. I would be really happy to hear from anyone. Thanks, Tanja | |
| DATE | Wednesday, July 13th 2005 - 10:28:33 PM | |
| Name | elaine | |
| E-mail address | elainewood50@cox.net | |
Comments |
I do not know what I have but my symptoms are stiffness after sitting for awhile. It takes me a few steps before I can actually walk normally. I have also suffered through the most excruciating pains in my legs. Feels like hot cutting blades running up and down my thighs and legs. It is so painful that I have cold sweat and fast heartbeat during the pain which lasts from ten minutes to an hour. no movement or massaging or being still lessens the pain. I just cry and try to endure it until it is over. I am taking klonopin for restless leg syndrome. I am on a lot of medications for other problems. I just wonder if anyone can relate to this kind of pain. | |
| DATE | Saturday, June 25th 2005 - 07:35:49 PM | |
| Name | toni | |
| E-mail address | spcloudy718@aol.com | |
Comments |
hi everyone! i have been trying to reach out to some to try and give some helpful feedback on sms. i would like to keep in touch and chat some time with anyone who wants it and has time. i dont mind talking with anyone who just want to vent. i have had sms before i was diagnosed. diagnosis was not until 1989. i only want to help to ease the problems we are facing dealing with this rare muscle disorder in this modern day and age. it is surprising though how only a mere handful of doctors, much less individuals that know about sms. | |
| DATE | Thursday, June 16th 2005 - 04:45:14 PM | |
| Name | jennifer | |
| E-mail address | bejeweljen@yahoo.com | |
Comments |
hi. just found this website. my mom has sms and it is very devestating. i would like for her to talk to someone about this. she feels as if she is going mad. i we live in florida, usa. please let me know if there is any support group around. i want to help her, but i dont know how. thank you | |
| DATE | Friday, June 3rd 2005 - 04:46:29 AM | |
| Name | joan fine | |
| E-mail address | joan.fine@calumetphoto.com | |
Comments |
It's very difficult to see this happen to anyone, and yet it appears that we have no cure. Our dear friend suffers from SMS, he is only 54, and his life is in a wheel chair, his speaking ability has become difficult to understand. He is bent over in his wheel chair, but this sweet person, never complains. I do believe his wife coul use a vacation, but she never complains either. God bless the ill, God bless the caretakers.
Respectfully, jf | |
| DATE | Tuesday, May 31st 2005 - 06:48:36 PM | |
| Name | Tony the Web Guy | |
Comments |
Hi all
glad to see Liz made it to the chatroom (eventually LOL),I'm not supposed to tell you but I was on the other end of the phone while she posted it for moral support! Unfortunately as this site is virtually run for free and in the interest of not draining the Charities funds will continue to be so, it is impossible for me to set up a chatroom as this would entail my system being used as a server a duty it is not nearly powerful enough to handle, but there are chatrooms already set upp for neurological disorders try this one http://neuro-mancer.mgh.harvard.edu/brainchat/classic.shtml try the general chatroom or the chit chat room, alternatively you could download one of the free instant messengers from Yahoo or MSN and contact each other using those. Hope this helps see you all soon Tony | |
| DATE | Sunday, May 29th 2005 - 02:54:31 PM | |
| Name | Charles Legg | |
| E-mail address | charlesrlegg@onetel.net | |
Comments |
There seems to be some debate in the research literature about the diagnostic significance of anti-GAD antibodies. According to Dr. Brown, on your website, evidence of abnormal antibodies seems to be required for someone to be diagnosed with SPS in the UK but the research literature suggests that antibody tests are not particularly discriminating. That is to say, people with SPS do not always have elevated antibodies. Does anyone know what the position is among UK neurologists.
I ask because I seem to have all of the symptoms of SPS but my anti-GAD antibody levels are normal. However, although my anti-GAD levels are normal, my symptoms are exquisitely sensitive to drugs that enhance the activity of GABA, the neurotransmitter affected by anti-GAD antibodies. | |
| DATE | Friday, May 27th 2005 - 07:11:59 PM | |
| Name | Liz Blows | |
Comments |
Hi one and all. Firstly thanks to Chris for sugesting we have a message board and to Tony for implementing it. Hello to Del, Claire and Richard. I am still waiting to hear from Peter's parents in Ireland, and also Kara. Iain, try and get your Dad to give me a call on 01482 868881. I will ring him straight back. If he can't/won't, then perhaps you could. Sometimes just talking to another sufferer helps. Ed, has your wife had a blood test for anti GAD? If the problems are confined to her limbs, she would also need an EMG, as it may be Stiff Limb Syndrome which does not always show a raised anti GAD. Don't forget, if you are in the UK or Ireland the support group is waiting to hear from you. We currently have almost 90 members, and the numbers are growing. Perhaps SMS is not quite as rare as the medical profession would have us believe. On that note I will sign off. (If this actually gets onto the message board I will have proved Tony wrong, and I am no the complete technophobe he thinks I am!).
Better health and happiness to you all | |
| DATE | Tuesday, May 24th 2005 - 10:02:27 PM | |
| Name | Ed Buffington | |
| E-mail address | StridenKay@aol.com | |
Comments |
I am seeking information regarding symptoms of SMS or SLS. My wife, age 58, had knee surgery 3 months ago after her knee just collapsed. It should have been a simple arthroscopy, but following that surgery, her knee locked and she began experiencing severe pain and spasms from the calf muscle to the thigh. The spasms became so severe after about 3-4 weeks, that the doctors performed a petella realignment, as her petella was malaligned. She still experiencing severe pain and spasms and her knee continues to be stiff. Weeks in physical therapy has provided no positive results. She had an episode this past week that caused her to be taken to the emgerency room by ambulance when she had a spasm, fell and could not get up. The doctors at this German neuologie hospital have suggest SMS as a possible diagonsis because of a number of the symptoms. Leading up her first knee surgery, my wife had been a very active, athletic competitive racewalker. She would racewalk 3-5 miles a day during the week, and 6-12 miles on both Saturday and Sunday. Do any of these symptons relate to any of your experiences? This whole ideal of SMS or SLS has total baffled us. Thanks. Ed | |
| DATE | Monday, May 23rd 2005 - 09:42:02 PM | |
| Name | RichardKing | |
| E-mail address | clarisa@tesco.net | |
Comments |
Hello Kara & Iain,
Sorry to hear your news. I suspect that my wife Claire is your nearest contact, as the crow flies acoss the Thames Estuary. Both Claire & I would be more than happy to chat with you. I'll send a PM with our details (sorry if that's a bit techi). Thanks to all who have put the site and the message board together. I'm sure it will grow and grow. Would members like a chat room type set up, perhaps once a week or more if found to be a benefit so that sufferers, especially those who have limited mobility, can get to know each other. Sorry I don't know enough about the subject to suggest how it works but thought it might be a benefit. Best regards to all. Richard - husband of Claire. | |
| DATE | Tuesday, May 17th 2005 - 09:57:50 PM | |
| Name | Tanya | |
| E-mail address | jarvo4@bigpond.net.au | |
Comments |
Hi, this is Tanya from Australia. Does anyone know of people living in Australia with SPS, or a support group. Since being diagnosed this year, I have been unable to find anyone in Australia. There should be at least 20 of us as we have 20 million people living in this beautiful country. Hope everyone is coping and keeping positive.
Tanya | |
| DATE | Friday, May 13th 2005 - 02:00:34 AM | |
| Name | Iain | |
| E-mail address | da_beansta@hotmail.co.uk | |
Comments |
Today i found out ma dad got SMS wen i eard dat i fort he managed to work his text but den i got told but i dont understand all this medical language im 15 from essex i just want to know the worst that could happen id really appreciate it thank you :) | |
| DATE | Thursday, May 12th 2005 - 09:58:26 PM | |
| Name | Louis | |
| E-mail address | louiskara@tiscali.co.uk | |
Comments |
Hi there - my husband has today been diagnosed with SMS after 18 months. we live in Essex (UK) and if there is anyone else near by that has this please contact us. Does changing diet or life style help to ease the pain? I dont know where to start to help him please advise
Kara | |
| DATE | Thursday, May 12th 2005 - 05:45:02 PM | |
| Name | Tony the web guy | |
Comments |
Hi all
great to see the chatroom is starting to take off, this is just a quick post to let Del know I'll be getting in touch in a couple of days Re the ebay thing ( haven't had a lot of time lately thats why its taken so long ). bye for now Tony | |
| DATE | Wednesday, May 4th 2005 - 10:38:14 PM | |
| Name | Toni | |
| E-mail address | spcloudy@aol.com | |
Comments |
Hi everyone! I live in the United States. I am a SMS patient with 2 boys 19 +24. I am a 49 year old female who was diagnosed in 1989 but showed signs at an earlier age. I did not have the signs until my first son was born, I was 25 at the time. Since then forget it! I also have been diagnosed with Type 2 diabetes January 2005. Hope to hear from you soon. | |
| DATE | Sunday, May 1st 2005 - 12:14:46 AM | |
| Name | Tanya | |
| E-mail address | rokwitch@aol.com | |
Comments |
First of all how strange that the first message I read was from another Tanya in another country! I am from Sacramento, trying my best to deal with SMS. I was Diagnosed 12/5/04. Lost my job, lost my partner, and with all the drugs and testing, I feel like I am losing my mind.
I is great to see that there is a support circle out there and people can share and learn, heck, I am still trying to figure out how to use a cane! Goog luck to you all, Tanya | |
| DATE | Friday, April 29th 2005 - 12:02:09 AM | |
| Name | Tanya | |
Comments |
Hi there,
I have been diagnosed with SPS at the age of 35. It has taken Doctors about 5 years to diagnose and it was only that I tried one more specialist, that thought outside the box. He tested for GAD antibodies because of the stiffness was only in my lower back and my upper legs, and you can guess that it came back possitive. Some days I would be OK and then out of nowhere, I would stiffen up and even have falls. (Boy they can be embarrissing and not to mention painful). It was with some relief to have a name for what I was suffering. On the other hand, it is also confronting, and scary.I try to be positive and accept that this is a new course my life is taking. It is wonderful to be able to share with people who, I feel, are the only ones who can truly understand what it is like to be diagnosed with SPS and to live with it. I am from Australia, and do not know of any support groups here as yet (Still looking around siberspace). As you all know, once diagnosed, the internet can become a wonderful source of knowledge. I look forward to reading your message board again. (Thanks Tony for the tip on how to post a message, I needed that..) Regards Tanya.. | |
| DATE | Thursday, April 28th 2005 - 03:28:30 AM | |
| Name | del | |
| E-mail address | naldeldalepugs@btinternet.com | |
Comments |
Hello Everyone.
I have S.M.S, this is a lovely idea, to chat,hope to here soon. Regards Del How's the wonderful lady Liz | |
| DATE | Thursday, April 21st 2005 - 05:13:25 PM | |
| Name | Peter Jones | |
| E-mail address | peteandd23@aol.com | |
| Homepage URL | http://hpwis.com/ | |
Comments |
I live in Wichita, Kansas, U.S.A. and will shortly be moving to San Antonio, Texas. My parents live in Donaghadee, County Down, Northern Ireland. My father, Jim, has recently been diagnosed with SMS. He had a small stroke (sometime in the last 4 or 5 years - they can't be sure when as he wasn't even really aware of it?). After probably 2 years of him "going downhill" with many sysmtoms he was finally diagnosed with SMS in March 2005. I keep in constant touch with my Mom who is coping extremely well in the circumstances (she went through over 2 years of breast cancer and got remission) but she is painting a really distressing picture of my Dad. In short (as this is my first e-mail) he can't do anthing for himself anymore, has all the spasms associated with SMS. My Mom does have people helping now to give her a break but it's very hard on her. My Sister and her Husband help too. It's just very hard for me being so far away (I will be trying to get home later this year).
Mom suggested that I get in touch with your site to start talking with other sufferers and people with knowledge of the condition so I can understand it better - and maybe even find out about treatments that my Dad may not yet have undergone. I recognize some of the medications but certainly not all of them. I hope someone out there understands and has the time to talk. I read Liz Blows story on your site and couldn't believe the similarities to my Dad. I was rivetted to the whole story. Dad is now 72 and has no previous history of diabetes. We have no idea on a prognosis for Dan on how much longer he can go on with this. What's the chances for someone his age? Thank-you for being out there with your site. Hope to talk with someone soon. Maybe even Liz! Peter. | |
| DATE | Thursday, April 14th 2005 - 02:55:44 AM | |
| Name | chris | |
| E-mail address | c.th@btopenworld.com | |
Comments |
Thanks for setting up this message board. It's a good way for members to make contact. | |
| DATE | Wednesday, April 6th 2005 - 06:49:03 PM | |
| Name | Tony The Web Guy | |
Comments |
Hi its me again
speaking to Liz (the techno-phobe), made me realise that not everyone would know what to do when it comes to posting a message on this board, well its as easy as pie all you need do is click on the SIGN link located directly under the last posting, this will take you to a new screen where you type your message (you don't need to add a web address only your name and message), then click the SIGN THE BOOK button directly under the box you've just typed your message into....THATS IT!!! Tony | |
| DATE | Tuesday, March 8th 2005 - 04:08:22 PM | |
| Name | Tony The Web Guy | |
Comments |
Hi Everyone
and welcome to the new SMS Message Board, you can use this feature to post comments, suggestions or just to chat Hope to see many posts in the coming months Take Care Tony | |
| DATE | Tuesday, March 8th 2005 - 03:09:56 PM | |