stiff person syndrome

[golfingsue]

is there other people out there & how are they coping,mine is in the legs

[DeniseLB]

My physiotherapist described me as having stiff limb syndrome in both legs from the knees down, although I have recently noticed that it is starting to creep up above both my knee joints, it is much worse on my left side as is all my disability and I can no longer completely straighten my left leg, although a lot of effort was put into it. But, with descent shoes I can walk almost normally with the aid of a crutch for balance. Both legs feel like blocks of wood, exercise does help, although only for that day as I have to start all over again the next. I am more than aware that if my right side does get as bad as my left I will no longer be able to walk at all. I just hope that doesn’t happen. I had never heard of it before.

How are you coping?

Denise xx

[swtb in reply to DeniseLB]

Sometimes my legs feel like wood also, but it seems to happen when i don't walk every day. I also suffered from leg cramps, esp. in the morning, but lots of magnesium has helped that. Stay away from ma oxide, aspartate, glutamate. Take to tolerance, meaning until loose stools. I've read that everyone on the planet is now deficient in this mineral.

[coat2003 in reply to DeniseLB]

Hi DeniseLB,

are we still on ataxia?Prolong sitting in one position(like now at the pc)(sitting in cinema)find harder to move, colder weather, no sunshine...can bring the stiffness out. I do exercise every day, one has to, to stay supple, annoying, but have enough free time.Try your best...and see. Most certainly keep exercising...Good luck! Keep warm!

[DeniseLB in reply to coat2003]

The answer is maybe or maybe not, I had the main ataxia symptoms but she did find other issues that she thought were not related or could not explain. I have tried to address these but it is like hitting my head against a brick wall. What happened to me in the first year was that my muscles started to shrink and it was much worse on my left, my left leg is now shorter than my right. Most of my physio was trying to address this problem, with the normal balance issues that we all seem to have it is almost worse for me as I am now lopsided. I brought this up as a real issue when I broke my right ankle and it made it impossible for me to even try and walk as my left side could not support me on its own so I was stuck in a wheelchair for 2 months. I find the NHS rubbish even more so since my mum sadly passed away. To me the only matter the addressed was, was I going to die anytime soon and as it seemed not then just get on with it then!

[coat2003 in reply to DeniseLB]

You need to look after your psyche...In a bizzare way I am full proof ataxic. It is hereditary-my paternal line, my bro has it milder...than me.It can become stressful, as there is a level of fear, not knowing what's going on...They found out ONLY not enough blood getting through and put him on a high dose of aspirin, to prevent clotting...He is facing shady/grey area, sthg is wrong with his cerebellum, but the scan isn't showing much, some changes in lesions...

I must admit mine is good 70% and his 30%, and I sort of take it easier, than him....Mainly, I am a straightforward case with walking difficulty, balance issues, wider gait, swallowing difficulties and worsening speech...His gait fairly normal, imbalanced on one side...dizzy spells, rapid movements...speech much more pronounced. I am awaiting to see a speech therapist, not only for speech, but mainly for swallowing, if there is an exercise, as the muscle needs tightening up....

Mri scan and genetic test just confirmed it, the type...

[DeniseLB in reply to coat2003]

I have not had the result from my genetic test yet, only 12 months! But my symptoms started kicking in a long time before I went to the Doc, they became obvious in 2015 but I can trace them back to 2011, I do have all the classics symptoms and my speech started to go so I will entertain the odd wall and voice what I think in my head, once upon a time I would have been locked up for that. I had the electrode test so it was proof that my amazing brain had stopped spreading signals I know the text book case. But, once I was not going to die my care ended and I have been on my own every since, I voice something I end up feeling stupid for mentioning it!

[Wedny1]

I get terrible cramping in my legs as well as stiffness the ache can be horrendous i totally understand how you feel. My right leg is worse and like dead weight as Denise describes my neurologist was going to send me back to physio but waiting list is huge is my area so i exercise at home when I can! Too add to problems have sciatica in hips but hey ho just getting on with it!

Be positive

[Hidden]

Hi, I just joined and am looking for a support group for Stiff Person. I just replied to someone, but that was in the epilepsy group, so I am not sure if this is where to be...

My SPS started in the left leg in 2009, with a horrific spiral cramp I was sure would snap my thigh in half. It was sudden onset, after waking up from a nap. I was screaming in agony in seconds, and luckily my late husband got me to stand and that helped put pressure on the muscles to stop progressing. But it went for half an hour, and that was my first epidsode.

No doctors believed me, and for the next 4 years I tried massage, every homeopathic suggestion out there, carried Apple Cider Vinegar everywhere, and prayed on the subway when a spasm would start to not be crippled over and locked in pain. It was hell.

In 2014, my sister who was a neuro nurse said it sounded like the spasms MS or CP patients had, and they gave them diazepam and baclofen. So I asked my GP and he gave me a sample trial, which stopped the spasms. A miracle. Then told me to see an orthopedist. They did a check up, thought something was terribly wrong, but the MRI revealed only mild spinal stenosis, degenerative spine and herniated discs.

They said I wasn't a candidate for surgery, and basically wasn't in need of treatment. I went ballistic as I was pretty sure the spasms would kill me. The ortho finally gave me a 30 diazepam pills when I threatened to report him if I ended up in the ER for not treating me. I am usually a very calm person, but SPS will terrify even the strongest...

I told my GP what happened, and that I knew something was terrible wrong. He finally agreed to keep be prescribed small amounts of diazepam for years, which I took only for major events, and baclofen which I was supposed to take three times a day, but they made me so sleepy, I just took this at night. It held me as sleep was my usual time to have an episode, when you transition from REM sleep to wakefulness. But the spasms still continued to hit, without warning, and I lived in fear, and pain.

In 2017, my cardiologist sent me to a neurologist, because I refused to take statins in fear of more leg cramps. He didn't believe my leg cramps could be that severe. So, I told my saga to the neurologist, thinking she will never believe this. But, miracles do happen - she had just attended a seminar on SPS the week before, and suddenly, all the weird things happening to me were ticked off a checklist, and after almost 9 years - I had a diagnosis.

Just not one anyone would want...When she told me the name, I thought it was a joke, as no one would take this seriously. We are all 'stiff' - until I saw the videos on youtube. Then I cried for three days. I do not test positive for GAD, and my meds prevented the EMG from a clear diagnosis, as I was on medication that prevent firing of the muscles. The catch is, you can't stop the meds - so that was inconclusive.

When that came back negative, I thought they were wrong - I prayed they were. But 20-40% don't test sero positive to the antibodies, and as I responded to the meds, and my symptoms were classic, I fit the SPS criteria. I went to a second neurologist, who specialized in neuro motor disorders, and he confirmed my SPS. I became very depressed after that.They immediately increased my meds, and I thankfully the spasms improved.

I am pretty much in pretty stable taking the following meds: Baclofen 10 mg 3 x a day, diazepam 5 mg 2 x a day, 5 more for a crisis, and dantrolene 1 x at night. I also find salonpas helps for the pain caused by spasms in the thighs and buttocks that are permanently locked. I am having an weird gait and the hips are immobile, so the legs feel very hard.

Things are changing, and now I have moved from just left leg spiral spasms to both legs, the low back and trunk locking, and the latest: diaphragm constriction - it's called the anaconda on the MS forums. Like your torso is being compressed and can't inhale. I also have swallowing issues, and now one eye closes all the time. Kind of a pirate effect without the patch. I am in whatever mode...At 69, I am invisible anyway.

So, all in all, life is very limited. I cannot walk far, I use a cane. I don't spasm with sirens, luckily when you live in the city, but I was told not to go out alone. I don't drive, but I also can't afford a companion. So I force myself to trust the Universe will protect me, or some kind stranger will help in an emergency. I carry my meds or wear my diazepam in a bracelet or a pill ring, and carry my phone everywhere, just in case.

I had a severe reaction to IVIG infusions twice, which I tried in January, and cannot tolerate it. Next option is worse, and I am not thinking plasmapharesis is a good idea, as I react to everything now it seems. I am seeing the neurologist in the middle of November, and I am sure he will want to try another procedure...or rituximab which is used with chemo, but with SPS has mixed reviews. And may not be covered by my insurance...

I am allergic to many things, and this infusion comes with a host of side effects. On a plus side, some people spontaneously go into remission with SPS, which would be nice. So I am praying for that, as the options for progression feel grim right now...There is a very informative group at Johns Hopkins that is specializing in SPS. I am sure everyone has seen it already, but just in case:

hopkinsmedicine.org/neurolo...

My journey in find a doctor to just believe me was hell. That is the biggest hurdle...so you have to take notes on all your episodes, keep a journal, and be the squeaky wheel... Demand the care you deserve. It is hard when you have to be the advocate and the patient. But it seems there are many more people with this 'one in a million disease' who are simply mis- or undiagnosed.

We are the ones who are teaching the doctors and therapists about this disease...sadly. So carry on, SPS warriors. I will update you all after my next neuro visit.

Maggie

[golfingsue in reply to Hidden]

sorry left my reply in golfingsue, not sure how to use this site

[golfingsue in reply to Hidden]

know just how you feel,i was diagnosed this year but like you the gad test was neg,the EMG was ok too,so i am on baclafen mainly at night as in day makes me so sleepy & does,ent help much & diazipan &also been taking Mycopheolate for 3 months but no better even worse but my prof in sheffield wants me to be on it at least 6 months so just hoping.What happened with IVIG infusion as i have been reading about it & spoke to my prof about it last week & said it maybe an optlon. sue

[golfingsue]

know just how you feel,i was diagnosed this year but like you the gad test was neg,the EMG was ok too.so i am on baclafen mainly at night as in the day makes me so sleepy & does`ent help much.& diazepan,& also been taking Mycophenolate for 3 months but no better even worse but my prof in sheffield wants me to be on it for at least 6 months so just hoping,What happened with IVIG infusion as i have been reading about it & spoke to my prof about it last week & said it maybe an option, Sue