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Anyone around diagnosed as having Stiff Person Syndrome, an autoimmune neurological disorder? Does anybody have experience with treatment other than valium as medication? I really only hear from a british web site.
Celiac disease Mobic Back pain Stroke Seizures Physical therapy Baclofen Ataxia Pain Epilepsy Valium Clonazepam Acupuncture Keppra Myasthenia gravis
hi i am sorry to be of no help i was just diagnosed today and valum is what i was given also.
Hi,
My name is Shirley. I was diagnosed with stiff person's in Feb. 2006. I had been dealing with symptoms for over 13 years and the Dr.s could not find what was wrong. I take valium and I have IVIG infusions to suppress my immune system. I only take .10 mg Vailum daily. 5 in the morning and 5 in the evening. I really don't know that it helps. I think the IVIG helps more, and I not sure of that. there is so little known about this disease. It is very rare. Feel free to write me anytime. I live in southern california. where do you live?
Later, shirley
Hi Stevebro, My name is Tina and I have had sps since last Nov. or that is when I was diagnosed with it. I take 40 mg of valium a day and 10mg baclofen a day plus a pain patch. I go to see a new neurologist next Wed. My family doc wants to do the ivig treatments but he wants to see what the new neuro says first. I just got out of the hospital on Mothers Day after going in the Tues before as my spasms were so bad they had dislocated one of my ribs. Im going to my orthopedic Dr. today to see him. I'll let you know more when I find out something. My email is tinam_328@hotmail.com you can email me anytime. I have a good friend in Australia who has had sps for 12 years and she goes through a lot she is going to Sydney next week for a lot of testing so I'm waiting to see what they are going to do for her. One of my other friends is getting a balcofen pump put in. I might try that, before I do the Ivig treatments. Write to me and I can give you several of my friends emails as we all talk and compare each others ailments. Hope to hear from you. Braveslover
Have you been tested for celiac disease (gluten intolerance) in addition to stiffperson? I can't help with anything other than Valium as far as medications (I did try Baclofen alone when I first started exhibiting symptons before my official stiffperson diagnosis but it didn't do much). I have taken 90 mg of Valium daily (three doses of 30) for the last four and a half years; so far it's still working, although every once in a while I do just fall over ("tinman"), still have balance problems and stiffness, am on a walker all the time, etc. My stiffperson symptons do improve some through the day as I take additional Valium. My neurologist talked about a couple of epilepsy drugs that they sometimes use for stiffperson the other day but didn't recommend them for me since the Valium still seems to be working. My symptons worsened about a year ago (balance worsened/fell more/was very fearful of falling and open spaces) and that's when my neurologist diagnosed me with celiac disease ("gluten ataxia"--additional balance and walking problems associated with eating glutens) in addition to stiffperson and I have been doing much better since I started eating gluten-free (no wheat, barley, rye, or oats or products with them in it--it's surprising how many food products have glutens hidden in their ingredients). I have resisted the Ivigs, since my neurologist seemed to think they might increase the chance of having a stroke (however, another neurologist just told me they'd never heard of that.) I've done a lot of research on stiffperson (and celiac disease) and have had two excellent neurologists. I'd be interested in continuing contact with others who have stiffperson. I know it's really changed my life but you do what you have to do (plus I know it's affecting some other people much worse so I try to maintain a positive attitude--easier said than done, right?)
Wow - what a quick response from all of you. Thanks.
I had never heard of the gluten intolerance issue. I will run this by the doc.
I live in Baltimore and have a Johns Hopkins specialist in sps who I've only visited twice. Her name is Beth Murinson - you can google her. She wrote the Yale web page description of sps and is a real expert. I just wish it didn't take so long to get appointments. I will ask her about the stroke risks of ivig.
Tina, I have an efriend in Australia who I met through the English sps web site. She told me of good experience with ivig, though their socialized medicine program makes it a financially reasonable way to go. She still takes about 10 mg valium daily, but was glad to not feel sleepy all the time. your message is a good reminder that I haven't written to her lately.
Shirley, what was your ivig experience like? Do you need to have it done on some kind of monthly or annual schedule? Your valium numbers seem amazingly low compared to mine. I'm impressed.
Docmaus, the valium improved my symptoms within 2 hours of the first dose I took in the hospital when they were trying to give me a diagnosis after I'd fallen about 5 times within a week, wondering, as I fell, why I wasn't putting my hands out to break my fall like normal reflexes usually make a person do.
Anyhow, lets stay in touch and keep each other from getting discouraged by this strange thing. If it didn't hurt to fall, I could almost laugh about it at times. The fear or self-consciousness seems to strike me most when I'm trying to walk rapidly down the street, especially with someone else. My knee starts to tighten up and suddenly I'm limping. That's especially true if it's been a few hours since my last tablet.
Everyone take care and watch out for those cracks in the sidewalk!
The IVIG treatment suppresses the immune system so it won't produce so much GABA,
I have them every 4 weeks for 2 days. It takes 8 hours to infuse each day. The only side effect for me is a headache, but I learned what to do to keep them to a minimum.
I used to fall. I found out that my B-12 was low. I started taking B-12 and got my energy back and stopped falling so much. I sometimes uses a cane, but a lot of the timeI can get around without it. I don't go outside without it. I do good inside. It seems that I stiffen up more when I get outside.
Take care and keep in touch.
Shirlet -
I'm much better inside, too...and not wearing shoes.
I'll give the B-12 a try.
Thanks,
Steve
Debbi
thanks for the resources.I haven't fooled with geocities in a very long time, but I'm looking forward to exploring your page.
Steve
Dear friends,
My wife has Isaacs syndrome. It is autoimmune. She is on a gluten free diet. He PT uses a cold laser to relax the muscles. It helps a lot & is very cheap. She goes to Baylor College of Medicine in Houston. She takes a muscle relaxer, anti-seizure, & anti-depressant. Her doc has suggested the IVIG infusion which is very expensive due to so much of it going to the war. She develops a claw hand & her leg will draw up. My email is vlewallen@ msn.com johnlewallen Feel free to write anytime. Peace. john
Hi Stevebro - I don't have a diagnosis yet, but my internist feels strongly that I have SPS. I'm in Canada, and nobody has suggested valium as a viable option. My original symptoms started last Jan. (07) with fatigue, then short-term double vision, then spasming in my upper torso that would swing me backward from the waist, then uncontrolled kicking out of my legs, then I developed a tin-soldier like walk, uncontrolled vomitting of white foam, .... Luckily, on one trip to the ER, I was put on Baclofen (muscle relaxant and anti-spasmodic), and then because I couldn't remain lying flat for an MRI (I would spasm upward from my waist), I was put on Clonazepam which I believe is an anti-siezure medication. The two medications together greatly reduced the spasming. When I started taking the allergy medication Reactine, the vomitting reduced greatly. Unfortunately, all the medications did add to my fatigue, but over time, many symptoms have let up greatly, and my movements are only slow and clumsy first thing in the morning, if I miss a dose of medication, or if I haven't had enough sleep (I need an afternoon nap daily). I haven't fallen in a couple of months, and just recently found out that my thyroid is underactive, so I have started on thyroid meds, and my fatigue is lessening. Also, because of whip-lash I started receiving acupuncture, and my over-all pain has decreased. So in short, ask your doc about Baclofen, Clonazepam, and Reactine. I did try prescription pain meds, but other than making me more tired, I didn't notice any difference. My heating pads help a lot too!
Brenda
Brenda
i seems so easy for them to do the agad blood test to help diagnose your symptoms. I know the level is about 1.5 and my first round came back with a result of 100, which got the docs to immediately start the valium, which really made a difference in only 2 hours.
maybe you have to ask them to do it - I didn't know to ask, but my neurologist who first mentioned sps gave me the excuse to bring up the subject of testing.
good luck,
Steve
John
what is a cold laser - sorry for my ignorance.
Steve
Hey Stevebro, I've been diagnosed with SPS since about March of 2003 and having some symptoms for about 12 years previous. according to what my neurologist has told me, they keep you in the Valium family of medications (can't remember the name right now) until your symptoms are strong enough for them to either add steriods or start doing the IVIG therapy. And some things that seem to help on the side for me are heating pads, chamomile or peppermint tea (antispasmodics, just make sure you get the herbal teas), cutting most of the caffeine out of my diet seems to have helped, and make sure you get plenty of sleep.
My sps specialist and I just recently got together (she has 70 sps patients) and she's still keeping me on 3 doses of 10 mg of valium. She did give me a new Rx for 5 mg tabs to take if my previous dose was losing effect. I'm best at home, not sitting in an office chair or standing around. So no drama.
Steve
I was on valium and that didn't help. I'm now on bacolflen and that seems to be helping a little.
tricia
Hi Steve,
I take the Keppra for the seizures. and bacfolen, and the
clonapin. i walk around pretty good in the house and am pain free. i do take mobic for my back. can you tell what
british website you use ? I would liek to hear feedback from them.....thanks DEE
Here's their new site:
http://www.smssupportgroup.co.uk/
Hi Stevebro
I was wondering how your specialist could have 70 SPS patients, that seems impossible to me, did you mean 7.
I know the States is big, but SPS is very rare, it would mean that all these patient would be travelling from all over America and maybe even the world.
I'm just confused, over the whole thing, because if she had that many patients, she would have you on other meds and a higher dose of Dia.
Hope you are now feeling better
strange as it may seem, she does have 70 sps patients. She is conservative in her recommendations for treatment. The only recent change is that she has prescribed some 5 mg diaz tablets to take at times between normal doses when I know I'll be on my feet a lot or in some stressful situation. They are handy but I've only used them a few times. My next step is to visit the physical therapist that she recommended.
Dr. Murinson does get patients from all over the world. She is based at Johns Hopkins, and seems to be well-known in the sps field, both in research and patient care. I am lucky to have this expert close to my home. People are referred to Hopkins for diagnosis of all sorts of unknown maladies - not knowing whether their symptoms are neurological, muscular, psychological or what. Again, while I happened to be diagnosed based on a guess by my own neurologist before ever meeting Dr. Murinson, I've never had such a relationship with a doctor, where the clock isn't ticking to squeeze-in six patients per hour.
i have had stiff person and myasthenia gravis, they were diagnosed in feb 2008 but probably started in nov 2007
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