Gait problems & Stiff Person Syndrome (SPS)... Any hope?

I have found quite a few other postings regarding SPS, so I would like to share this and am hopeful that some of you can offer your input.... I am posting this in all of the Groups to which I belong in hopes that someone, somewhere might recognize something within the bigger picture, in case there is still more here to learn beyond the SPS diagnosis…

My husband's story, written with his guidance....

Around 1995 or 1996, my husband's legs started giving way (buckling) beneath him as he stood or walked. The buckling itself did not cause pain, but there was certainly a pain present throughout his legs, constantly. Sometimes he'd describe it as a charlie-horse feeling, and sometimes as stabbing knives. He also began to feel very, very tired. During this time, his legs began to spasm -- shaking very rapidly & uncontrollably, with some sudden kicks.

These symptoms continued and new ones added themselves. Stomach upsets turned into stabbing and crushing pains in the chest & rib area; Headaches turned into Migraines; Sinusitis turned into Bronchitis; drowsiness turned into an overwhelming all-consuming tiredness; his whole body felt like one big tug-of-war game was being played in his muscles and bones -- without his permission....

In the early years, when we 1st got health insurance & began the never-ending doctor visits, forms, referrals and tests, they suspected MS. However, he was never considered definitively diagnosed with MS due to only miniscule changes on the multiple Brain MRI's and 2 inconclusive Spinal Taps. The Evoked Potential tests did make them still strongly suspect MS, so we have seen a string of Neurologists over the years in Philadelphia at MCP, Hannemann, Temple, Univ of Penn and Jefferson.

Also over the years, other diagnoses were definitively found which explained parts of the symptom line-up, so at least those areas of concern were able to be addressed and slightly improved. It turns out that he has:

Graves' Disease (explains some of the tiredness)
Costochondritis (explains the crushing chest & rib pain)
IBS as well as Barrett's Esophagus (explains the stomach upset)
Deviated Septum as well as Sinusitis (he had sinus surgery to try to help this, but it really didn't do much)
Fibromyalgia (explains most of the tiredness as well as the tug-of-war feeling in his body)

FINALLY - in Nov 2007, we went to see Dr. Tatarian in Philadelphia at Jefferson. He listened to our story, looked at the volumes of test results history, notes & MRI's and performed a full physical evaluation. We let him know that after 12 to 13 years, all that we knew was that it most likely was NOT MS -- but we still didn't know what it was or how to help my husband feel better, walk better and function better.

Dr. Tatarian said that he wanted an anti-GAD autobody test to be performed, and he gave us a couple of possibilities of what could be going on -- one of them being Stiff Person Syndrome.

The test came back an 8 (high), so by January 2008 he started my husband on IVIG treatments -- 2 consecutive days a week, approx 6 hrs a day, every 2 weeks. Some of the spasms have subsided in his legs. However, about a year ago, well before the diagnosis, he had also developed tremors in his arms and hands, and they have not subsided much yet.

He is still overwhelmingly tired all the time, he is still in constant pain, and he still stumbles when he walks – though not as often, thank God.

Is there any hope in site?
Has IVIG helped anyone’s gait?
Will he ever be able to make plans again, without wondering if he’ll be able to make it on that day?
Will he ever be able to work again?

Thanks so much for taking the time to read through all of this – we appreciate it.
It was very hard for us to write it all out & to “put it out there”.
All responses are welcome – thanks again….

By SJGRAY
Posted June 8, 2008 at 12:22 pm
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Hi,
How strange, I had some of the same symptoms that your husband had about 14 years ago mine started too. It started with a pain in my right hip in the siciata nerve area. I went to the Dr. and she said "you look fine". I went 3 times, nothing. I had that stabbing pain in the back of my left leg that felt like someone stabbed me with a knife and ripped my leg. I just learned to live with it. I also had lower back pain. I eventually went to a neurologist and he said I had MS, but he would not treat me. I went to see an MS specialist and she did all of the MS test, and they all came back negative.
She said she knew something was wrong, but she did not know what. Test after test. I was tired all the time, but I just kept going and going. I would stumble sometimes and then I started to fall. my legs would feel weak, but they didn't tremble. I had no pain and I still don't have any pain. I take IVIG treatments and twice a month for 8 hours. Sometimes I think it helps and sometimes I think it don't. I have some days when I walk perfect as if nothing is wrong and sometimes I have to use a cane or something to hold on to. Sometimes I will just fall for no reason. I have a thyroid problem and I take medicine for it. I think when I look back on it all this started long ago with little suttle things. I was off from work for 5 months. I just went back in April, but the stress of working is too hard. stress is bad for this illness. I am going to file for disability retirement. I just take it one day at a time.
Shirley

By stevebro
Posted June 8, 2008 at 12:25 pm
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Hello serendepity
three summers ago, I too chased around through a series of unsuccessful doctors' visits before a neurologist listed stiff person syndrome (along with MS and things like tick infection) as a possible cause. We set up an MRI, but in the week before that MRI visit I had fallen 3 times doing stupid things (like stepping up to the sidewalk from the street). I had had enough and just went to the e.r. at the hospital I was going to later visit for the MRI. My symptoms were not as serious as your husband's - they were limited mainly to a stiifness in my right knee after I had been sitting for more than an hour or so. I could sort-of walk off the stiffness after a while, but a long walk would really tighten it up. I have other issues - Type 1 diabetes that's well controlled, seizures well controlled by meds, and a cardiac bypass.

Anyway, at the hospital, I mentioned sps to the resident who I saw most often. She had me go through a lumbar puncture and MRI, but the best and easiest thing was to run AGAD tests on a blood sample. The results came back with an agad level of 100 (the furthest they normally test for). She immediately started me on 10 mg diazepam (valium) 3x per day. Within 2 hours, the tightness had really subsided. I now know that diaz is the typical first treatment for sps. From everything I've seen on this site, ivig is a much more expensive way to go, but a lot of people who are treated with it still need to take diaz or similar meds. I have a great doctor who specializes in sps here at Johns Hopkins Hospital in Baltimore, and she hasn't pushed for ivig yet.

Anyhow, it might be worth talking to your husband's docs about this medication. My main side effect is the sleepiness it can bring on if I am not actively doing something (even posting on the internet is enough to keep me awake),

Best of luck to your husband (and you). This site is a good one to hear from people with all kinds of variations on the symptoms he has and treatment for them.
Steve

By serendipity
Posted June 8, 2008 at 3:53 pm
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Hi Shirley,

If only we had a dollar for each time over the years that someone said “You look fine”, huh? (We’d have a million, right??)

Thanks so much for writing – it means a lot. You live with these weird symptoms for so, so long, and you start to feel a little crazy….

You mention lower back pain… Yes – there had been yet another specialist for that – that one thought “Ankylosing Spondylitis” (AS) when he tested & found my husband to be HLA-B27 positive (“HLA-B27 is strongly associated with a certain set of autoimmune diseases” - http://en.wikipedia.org/wiki/HLA-B27). However, the bone scan that he ordered came back pretty much normal, and even though there are slight spine issues, AS did not truly seem to fit the picture.

My husband has so far refused a cane, but he does utilize leg braces or sometimes an immobilizer on his left leg on the really bad days.

It was finally around April of 2007 that he absolutely could not work anymore. Stumbling, aching, pain, Migraines, “brain fog” and the overwhelming exhaustion got to him. We are truly, truly fortunate in that his job (well, former job) had a Long-term Disability plan, so that has helped. He is finally scheduled to fill out the Social Security Disability paperwork in about 2 weeks, and I am praying that all goes well. I know that it can take a very, very long time and can very possibly not have a good outcome, even with all of these difficulties.

Yes – stress is definitely bad for SPS. I remember, years ago, my husband would break out in hives for no apparent reason (just another weird symptom). Could have been the stress, and the then-undiagnosed SPS…..? Who knows…

Please let me know if there is any advice or encouragement I can offer to you as you go to file. It has been very overwhelming, but I have learned a lot along the way, and I am always happy to share….

Take care, and thanks again for responding. :)

By serendipity
Posted June 8, 2008 at 3:58 pm
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Hi Steve,

Thanks so much for writing – it means a lot. It’s in a strange way comforting knowing that you’re just down in Baltimore – not that far away.

I recall reading an older post of yours and seeing the 100 for the AGAD test – wow!! I remember showing my husband, too….

I am so glad that you are doing well. You are so fortunate to live in Baltimore and have a Johns Hopkins’ doctor! I also feel compelled to share that when the possibility of SPS was mentioned last year, I went right home and starting digging online & found that a Dr. Dalakas @ NINDS had done a LOT of research on SPS…. & NINDS is just in Bethesda! I just felt very fortunate to live where we do, & hence the “serendipity”….

Anyway – Here’s most of Hubby’s daily, current meds:

Spasms: Baclofen 120 mg, Diazepam 15 mg, Lamictal 100 mg (recently started this one)

Fibromyalgia: Celebrex 200 mg

Stomach: Imipramine 20 mg, Nexium 80 mg

Thyroid: Levoxyl 88 mcg

Migraines: Topamax 200 mg

Mood: Lexapro 20 mg, Wellbutrin XL 300 mg

Dr. Tatarian had previously tried upping (slowly) the Baclofen to 180 mg & the Valium (Diaz) to 45 mg, but my poor hubby was an absolute zombie and could not function & definitely could not drive to any appointments. So, he brought them back down (slowly), & things are much better in that respect….

Thanks again, so much, for responding.

Take care. :)

By serendipity
Posted June 8, 2008 at 4:26 pm
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Hi dontfallinastore,

Thanks so much for writing – it means a lot.

Yep – Hubby has many stomach troubles. He has been tested for Celiac Disease as well as general Gluten intolerance and also for Whipple’s. All of those tests came back negative. He does have Barrett’s Esophagus, though, but we haven’t done as much diet modification as we probably could/should.

I’m curious of how were your B-12 levels? (I ask that because I’m thinking along the lines of absorption problems…) I know that his were a little low at times, and so we’d go to the family doctor & he’d get a B-12 shot once a week for a few months, but it seems to have been fine for awhile… I think that I’ll ask them to check it again, though….

Also, a weird stomach thing that I believe our Neuro attributed to SPS was that his belly was extremely swollen and very, very tight…. Did that ever happen to you? (I’m wondering if he should be re-tested for Celiac, or something….)

Take care, and thanks again for responding. :)

By stiffy
Posted June 9, 2008 at 1:26 pm
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Hi,

like dontfallinastore I'm suffering from Celiac disease and SPS. But I've never realized that not keeping the diet properly might cause problems walking. Anyway it's good to hear that I'm not alone with celiac disease and SPS.

But SPS mostly has another autoimmun disease in addition. It's just a question of which one it might be. Keep on searching!

stiffy

By dee3
Posted June 10, 2008 at 3:21 am
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Hello Serendipity,
I have had SPS since 05 of jan. My doc did alot of mri's on me and then the neurologist did a EMG on me thats when she found out what it was. they also thought i had ms but ruled that out. my toes would curl down and my legs were so stiff that i couldnt even walk and was in severe pain in my lower back. i would have muscle spasms at the top of my theighs.
so she started me on keppra for seizures, and after about 3 days the pain and the stiffness left. i was still weak , and walked with a hugo for months. then after therapy i got my strength back in my legs and everything is going good. i still use a cane, cause i have fallen so many times, but i can walk normal in
small areas. i also take Klonapin , 1 m in the morning and the 500 m of keppra. and then in the afternoon
i take one clonapazebam and a bacfolen and i do take a 7.5 in the morning and i think i have my meds down pretty good and seem normal again. i have been living in egypt cause of my hus job and when i get home to get tested , i will have my b-12 checked out , as SJGREY had suggested it may have to do with my
balance. together, which each others support, i think we will make it ...PTL... sincerely, Dee

By serendipity
Posted June 22, 2008 at 1:02 am
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Hi Stiffy,

Sorry it took awhile for me to respond…. Thanks very much for replying!

Yes – there do seem to often be other underlying Autoimmune causes with SPS…. With my husband so far we have found that he also has Graves’ Disease and is HLA-B27 positive. I have found other references to Autoimmune Thyroid problems & SPS. It’s amazing how everything is connected, isn’t it…?

Anyway – Thanks, again! :)

By serendipity
Posted June 22, 2008 at 1:03 am
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Hi Dee,

Sorry it took awhile for me to respond…. Thanks very much for replying!

I am so happy for you that things seem to be going well. I will have to ask our Neurologist what he thinks about the possibility of trying Keppra for my husband.

That must be hard to be away from home and have all of that happening to you. I am glad that you have found support, here.

Take care, and thanks, again! :)

By dee3
Posted June 23, 2008 at 12:39 pm
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Have you thought of taking Cymbalta 120 mil.for your mood and your painful symtoms like fibro, it has less
sexual side affects and weight gain then lexapro , and there would be no need to take welbutrin. just thought it might help you too. thanks , Dee

By screamer
Posted June 28, 2008 at 5:21 pm
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I have not been diagnosed but no one knows why I scream out in pain a lot. My muscles spasm so hard I scare everyone to death. It hurts and staarted for me in my side and is mostly in my trunk sola plexis. my ribs and back. But I get them everywhere. My balance is off especiallly when i look up. I am diagnosed with fibromyalgia and I am taking valium, baclofen, cymbalta, many more bentyl, a slew of pain things. I too have IBS. I really think i have sps how do I get a diagnosis I had the gaba test in the ER supposedly. I don't know for sure. Do you have spasms that make you scream and do you have lots of pain especially in turbulent weather situations? I cant take it anymore. I am so depressed and in pain. I do not feel relief until the third dose of valium. And I will still spasm on top of it. I need to know if I am on the right track. I know at first I could not walk much if at all. I was stiff n it felt like glass under my feet.
screamer

By screamer
Posted June 28, 2008 at 5:28 pm
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B12 comes in patches now and sublingual dots are the two best ways to get it besides eating meat. It only comes from meat but lots of us are not gettiing enough it helps calm things down and magnesium too are both great for relaxing the muscles.

By screamer
Posted June 28, 2008 at 5:32 pm
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allergy testing by blood test hellped my stomach stop hurting constantly. look at the leap program. the only real test for celiac is a biopsy of the intestine or stop eating gluten for three months and see if you feel better. That is the cheapest way to find out. I am allergic to lemons and chicken and tomato lots of normal things I would never have figured out. When i eat these things I hurt more and my stomach bloats out like I am pregnant. Do you ever have valve problems inside they are too tight?

By taunna
Posted June 29, 2008 at 7:03 pm
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Hello,

I would ask if your husbands doctor has considered or has already tested him for Neuromyatonia (aka Isaac's Syndrome)? The first test is generally done with a simple procedure that can be a slightly uncomfortable called an EMG that would test the muscular and nerve activity and from there his doctor may choose to do a blood test but should have a better idea if it were Neuromyatonia based on the EMG readings.

If that is part of your husbands medical issues there are two groups on Inpire with individuals diagnosed with this disorder. It is similiar to Stiff Persons in how the muscles tighten....etc.

By screamer
Posted July 7, 2008 at 2:42 pm
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This is my list of meds at one time. Lot are the same now. Loved topamax it worked and made me lose weight. Turned out to be allergic to it and had to stop. I noticed no pain drugs does your husband not have pain since he got muscle relaxers. i think my pain level dropped significantly with valium. I take cymbalta for depression and bentyl for my IBS and miralax really helps less pain moving through all the tight spaces. I have severe bowel contractions but very slow digestion. It literally takes a week for something to go through me. So parastalsis is also a muscle function. I had some success with phenagren but it makes me soooo sleepy. And hungry.
good luck to you. I am getting an EMG soon. The blood test was negative or 1.
jeni

By screamer
Posted July 7, 2008 at 2:50 pm
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they make b12 sublingual dots and now patches. I think the dots are the best. I have better energy and less sweating episodes. I cannot take the shot ithurts too much. The dots are cheap and easy. And they work for me. Also neurofeedback is very helpful for me. It calms everything down and can predict and deal with a migraine.
jeni

By screamer
Posted July 7, 2008 at 3:22 pm
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I had a test called the LEAP test for allergies and it is a blood test that is expensive but tests for 200 things that you eat and preservatives. Very specific and you get a list of red foods you should never eat. Mine were tomato, lemon, chicken, lima beans, the yellow list are things that you are supposed to eliminate from your diet for the maximum improvement. I
am lucky to not be allergic to a lot of preservatives only one. It is very hard to eat out but once you learn what is in things and I always get the simplest thing on the menu and leave offf t least one thing. wheat I should avoid but have not been successful it is literally the hardest thing to do. One day maybe they will come up with stuff I like to eat. The point being...I had a constant stomach ache that kept me bent over in pain for years nd now I know right away if I have eaten something and what it does to me. some things seem to be more benign. Garlic gives me migraines-even a strong smell of it. I wondered why every time we went to red lobster I got a migraine. I am also alergic to shrimp and lemon lots of stuff they have there. Other things give me a stomach ache for three days. I have been good to not eat things but sometimes they sneak things in.
jeni

By Tinybird
Posted July 8, 2008 at 12:13 pm
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The best advice I can give you is to take one day at a time. Live life as best you can each moment of every day. Living with this kind of pain and the unknowns is very difficult. As a care giver of a person with Stiffperson's you just have to be very patient. I look back on the last 12 years of my life and I have no idea how my husband has put up with me. One minute, or afternoon I am doing well and the next I cannot walk. Sometimes it seems like an excuse to get out of things I don't want to do...even I can see that, but that's just not the case. Remind your husband of all the reasons he needs to keep going. I think about my kids, my husband, my friends I want to spend time with, the scrapbook that I want to finish. The trips I want to take. There is still a life out there, it's just going to be different than what you planned. As far as the pain, I depend on meditation, deep breathing, soaking in warm water, and as a last resort medication. I take so many muscle relaxers I try to stay away from the pain medication. I try to keep in the mind frame as less is more. I also worry that I will over do it if I take medication that will hide my pain when I am up and around.

Acceptance is the toughest part! For both you and your husband. Don't give up on him, you just may be his only life line at times. He needs you to be positive. Some days this may be even tougher on you than him. I can also see that for my husband. If there were anything I could do to find a cure and be the person I was 12 years ago I would. Trust me, all of us Stiffperson sufferers would.

God bless you both!!

If there is anything I can do to help support you guys emotionally, let me know!

Tinybird

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