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 Domenick
Posted September 26, 2009 at 4:09 pm
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I have noticed your husband is on Lexapro 20 mg, Wellbutrin XL 300 mg. I have seen that Lexapro for SPS patients is very bad. Wellbutrin is very bad for everyone. I would look at getting him off both of these meds. Your husband is on Celebrex should be enough but I am not a doctor.

Good Luck and God Bless
Domenick

By Noemi
Posted September 26, 2009 at 4:39 am
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I was diagnosed with SPS last year , believe me there so many doctors unaware of this disease they will treat you for depression or other DX . I am a RN and never heard of this disease during my 34 years of practice either, I was taking gabapentin, baclofen xanax without much results until one day I had to accept my neurologyst DX who recommended me IVIG , diazepan I am only taking 13 mg a day but I still having the stiffness specially when I am under a lot of stress, I just started my first dose of IVIG yesterday I am sincerely hope I can go into remission as one of the Drs told me last year , when I did not accepted my treatment, I had to finally accept the DX so I could start the treatment, I am praying that the IVIG will help me to walk again w/o a walker and start to work again, in the meantime I keep looking for solutions, believe me even the Drs. don't know with certainty about this disease so we better keep our hopes high and keep looking for solutions, I know it has to do with the Inmune system. I used to have severe pain when I got the spasms , but thanks GOD they subside with hypnosis, meditation,deep breathing, relaxation and the most important diazepan, lets see what is going to happen with the IVIG I have 4 more doses to go I will keep you posted, God Bless You all out there that have this strange disease, dont give up continue exercising if you can and looking for solutions .

By confused13
Posted August 19, 2009 at 12:10 am
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I seem to have a lot of symptoms that all of you do. I started to take cymbalta for pain and it has helped, is that typical for sps or no? i really think I have sps but idk and im not sure why the cymbalta is helping some...any idea why? because i don't think this is fibro, but idk? any ideas

By OlluckyMe
Posted January 6, 2009 at 6:45 pm
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I guess I did need to add, that I also am subject to loud noises, and sudden touch if someone sneeks up behind me and also I get very stiff in intense situations also I cannot handle the cold, tears me up.

Has anyone experimented with erbal type medicine and if so, what was it, and what were the results?

By JenD
Posted January 6, 2009 at 8:46 am
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There are so many replies that I don't know if this has been suggested yet but have your doctors considered adult onset mitochondrial disease? This should definitely be ruled out. You will have to find a metabolic specialist. I would suggest Cleveland Clinic. I am in the process of getting evaluated for mito. I have the following symptoms:

Severe spasms diagnosed as generalized dystonia
I take Baclofen 100mg, Diazepam 10mg, Zanaflex 8mg and Lortab for pain.

Gastrointestinal dysmotility...severe gastroparesis and small bowel dysmotility.
I'm on IV nutrition (TPN) and don't eat much of anything by mouth.
I take Nexium, Domperidone and Zofran

Migraines...I take Maxalt as needed.

Fibromyalgia and progressing peripheral neuropathy, I take Neurontin

I also have some symptoms consistent with dysautonomia including dizziness when standing, tachycardia and of course the GI issues and such.

Specialists say that mitochondrial disease should be considered in any individual who has three or more organ systems involved. Instead of all these diagnoses for one person it explains them all and gives one name for all the problems. It can be diagnosed via bloodwork and skin/muscle biopsies. You can read more at.

http://www.umdf.org
http://www.mitoaction.org

Good luck. I think a consultation at Cleveland Clinic would be your best bet. Please feel free to e-mail me if you have questions.

Take care,
Jen
http://www.caringbridge.org/visit/jenelle

By OlluckyMe
Posted January 6, 2009 at 12:26 am
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Hello Everyone,
I'm from Tn. and I have been diagnosed with SPS. I fit all the major symptoms, but don't seem to be going through all that you all are.
Here's my story:
8 years ago, one day I was perfectly fine and the next day I started having problems. I am a male, 6'4" tall, 260 lbs. and was healthy as could be. I went to work one morning and needed to toss a tape measure up about 10 feet in the air and was unable to do it. No pain or anything, just not the strength to trow it. This had me concerned, considering a month before I could throw a baseball the length of a football field. Not thinking much of it, I let it pass a few days, but it didn't get better or worse. But I decided to go to a Chiropractor, thinking I might have a pinched nerve or something. This was in Mid February of 2001. Well things didn't change for several months until around Sept. of 2001. I got up from my chair and started to walk and I noticed I was dragging my left foot. I had to make a concience effort to make my left leg move normal. Around that same time I noticed that I was losing movement strength. When I say that, I mean I was still as strong as I ever was, but I couldn't do things like shoot a basketball up to the hoop, or throw a horse shoe, those type movements. But I could still pick up 150 pounds with no problem. So, around the 1st of October, 2001 I decided to go to my regular doctor. He had no idea, so he sent me to a neurologist. He put me through a series of strength tests, and then decided that he wanted to do an MRI. So a few days later I did the MRI and met him at his office. He said according to the person that read the MRI that I had severe Stenosis between c3 and c4. But the doctor said I don't believe this is what you have. He asked if I was familiar with Lou Garriggs desease. I told him yes, and he said that is what I think you have. Well, I left his office with a death sentence, he said I had 18 months to 5 years. Well about a month later, I got my regular doctor to refer me to another specialist in Nashville Tn, at Vanderbuilt Hospital. He did. All this time, from the very beginning I had kept a diary of my symtoms from day one. I was sent to a "S" doctor, MS, ALS etc... Well, again all this doctor did was a strength test, but when he got done, he told me I did not have ALS, but I did have something wrong so he referred me to another neurologist. I went to see him, and again we did the strength test, he confirmed no ALS. But he read may diary and one of the things that stood out at him was that I fell, and I fell alot, but I fell like a tin soldier. He wanted to do a blood test to confirm what he thought I had. So we did. Two days later I receive a phone call telling me that I was diagnosed with SPS.
He gave me a choice of two medicines to take, Buspar or Valium. I was scared of Valium so I chose Buspar. I took it for about 1 1/2 years and had increased my dosage up to 22 pills a day, and felt no different than the day I started. He made me switch to Valium. Upon taking the first one, I felt a tremendous difffernence in about 15 minutes. I stayed at one 10mg Valium for several years, but as time has passed I have had to increas the dosage. At the present time I take three 10mg Valiums at one time when I get up, and I am good for the day, unless I meet with some great stress during the day. Then I take a couple more. The most I have taken is 7 in one day. I also have Hypothyroidism which I take Synthroid for.

I have written all of this to let others know the progression of my bout with SPS. I have no pain. I have small muscle twitches and when my medicine isn't working I get extremely stiff legged and my upper body shoulders and arms get very, very stiff. But no pain. The stiffness seems to have decided to settle in my shoulders and arms more than my legs. My legs just seem heavy most of the time, but there are time that they both get so stiff, that it is all I can do to move. But as a general rule, if I take my medicine, don't try to do any work just get out and socialize, I don't have any bad problems. Just a little stiff, when I try to drink coffee or something like that I get the nervous shakes trying to get the cup to my mouth. To sum this LONGGGGGGGGG story up, my SPS has worsened over the last 8 years, in that I can't do what I use to do, but I can still walk almost normal and if you haven't been told I have a problem, you would never know it. Exteme stiffness is my only problem. I curious if there is something out there besides the Valium that might lessen the stiffness. I haven't tried anything else. And I don't have insurance, so the IVIG is not an option at this time.

Thanks for listening to me ramble.

By kraemer40
Posted December 30, 2008 at 10:08 pm
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hey can you please tell me what the emg shows for sps. and did they do bloodwork on you for anti-gad. I really appreciate your help and thanks so much for writing until i came on here i didn't realize how many people suffer with this type of pain. Its helps to compare symptoms and speak with people who truly understand . GOD bless you and thanks again.

By larkatdawn
Posted December 27, 2008 at 1:47 pm
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I signed on in the hope of finding causational links between high levels of stress and acute B12 deficiency - aka megaloblastic anemia/addisonian syndrome, etc.

So far, no luck. However, I did find this page on SPS which describes the effects of extreme B12 deficiency.

I kept mine in remission for forty years using Homeopathic therapies - most of the other blokes gave me the usual "you don't look ill..." " why do you want to be ill..." "I hear you say you don't want to do housework," etc. (PS - I dxd myself correctly at hte age of 12 but no one would listen)

After an attempt on my life followed by stalking, harassment, etc., my B12 levels and I started my "Frankenstein" walk - yes, incredible lower back pain, etc. Other symptoms are too painful to recall.

Thank God for Dr.D - gentle, kind, real doc; he listened to me, confirmed my 12 year diagnoses with tests and prescribed appropriately, thereby saving my life.

I don't like admitting weakness, but in the hope that at least one of you may be helped by this. Also, worse from stress can suggest B12 deficiency. One unexpected bonus has been the complete disappearance of migraines. Again, under homeopathic treatment these went from a "three day event"to a thrice yearly, two hour prodrome ten minute visual discomfort.

B12 shots are not inconsistent with homeopathic treatment - tho I'm hopeful of a complete cure eventually - because Hahnemann said that the "blood is the soil on which disease grows: healthy blood, healthy patient." He is the father of hematology, though will never receive credit for this and his other amazing contributions to medicine.

By larkatdawn
Posted December 27, 2008 at 1:18 pm
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Has anyone considered Megaloblastic/Addisonian anemia?
Too frequently overlooked.

Consider discussing this with your provider, and a regimen of B12 IM daily or monthly if labs so indicate.

I've heard good things about the patch - feedback appreciated.

By dragonfly44
Posted December 27, 2008 at 11:26 am
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Hi Serendipity
I sorry by your housband, i know similar symtomps that him, also have trembling like parkinsons decease.....my neuro told that it is not parkinsons, and the past epileptic attack was only a think that all persons have one time in yours lifes..... only give more diazepan 30,cymbalta 60 mg,propanol 30 (inderal),metformin 850 ,terazepan (diazepanpiridoxina,sulfirida) dolotensodox(ciclobenzaprina/meloxicam) 15 mg at nigth and Zatriz(clonazepan) SL o,25 sublingual for an emergency.......all make like me almost a zombie....before asleep at nigth...now sleep at day ..... great part of that.......but have continus myoclonus, stiff in hands and wrist, also foots, pain, have involuntary movements including whwn i am sleep (i filmed that....i past the part that all persons unbelieve in me, and thing that i am crazy....quickly treatment sychiactric)....sleep apnea .....overcharge sistolic cardiac condition, over prodution insuline problems, higth bood pressure, i had pancreatitis also and problems with my tyroides, haschimoto syndrome....but now are equal before the all many docs that saw me and told: you are O.K.....give me one dollar to me also.. now sleep like a little angel!.....an applause please to all docs more lost than Michel Strogoff....the secret courrier of Russian Zar .....only when i awake note the symtoms....more less cure.....or not?
Add to pain,tremors,twisches,hiperhidrosis ....that i am living in the hell of world...Peru...far away for find one doc qualify in reare decease any here have not idea what tell me or what can will explain what it happening to me......
One time upon I was faith.... but you must be think possitive.....because you have more possibilities that people like me, ill and dont have possibilites to find good docs.....something else that not given drugs all day for taking sleeping and dont complaints or disturb of owers jobs.....I Know that you and your housband can do it , in your country will can find the best help......the specialist are there.....figth....there are a reare deceases.....and more of us past more that 15 years to find the effective treatment or rigth diagnosis..
Good Luck...and happy holidays.
Andrea

By Brown1964
Posted December 26, 2008 at 5:13 pm
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E.Brown 26/12/2008
UK.

Hi really sorry to here your story about your Husband, I have been going through guite a lot of the symtoms that is discribed and i have been going from one doctor to the next and not being getting no where with an answer sometimes i have spsams for about 13 to 16 hours in a day and since then i have been put on Diazepam, 40mg baclofen 90mg tramadol for the pain sometimes 300mg in a day and diclofenic 50mg twice a day and still the pain can be so overwellming it sometimes too much to bear, but one that keeps me going is my faith in my God Jehovah, because without him life would have no meaning. So i hope that you and your Husband can take comfort from this scripture in Isaiah 33:24 that very soon know the Bible assure us that sickness of all sorts will be done away with please keep this hope in mind. By e.Brown from the UK.

By JenD
Posted December 23, 2008 at 10:16 am
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After reading your husbands symptoms, his condition sounds very similar to my own. I have dystonia, fibromyalgia, gastroparesis and small bowel dysmotility, neuropathy, weakness and migraines. I have also gone through the run around with diagnoses. This has all culminated in the possibility of metabolic disease, specifically adult mitochondrial disease. I would highly suggest that your husband be evaluated by a mitochondrial disease specialist if he has not been already. Mitochondrial disease includes all of your symtoms and certainly needs to be ruled out. I would also suggest a movement disorder specialist to rule out dystonia and SPS. They both tend to get misdiagnosed as each other. Please let me know if you have questions. I will be evaluated for mito in January so I will be able to let you know more about it then.

I wish you all the best and hope you enjoy the holidays. I will keep you and your husband in my thoughts and prayers.

Peace, Jen

By Hotsparks
Posted December 22, 2008 at 10:43 am
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Hello Serendipity,

I just wanted to throw out another possibility - CTX (Cerebrotendinous Xanthomatosis). My husband has experienced many of the same symptoms - stiffness, gait problems, etc. He was initially diagnosed with MS. My husband did have lesions in the white matter of his brain, but the extreme stiffness and tremors just did not quite fit MS. There is a blood test for CTX looks for high cholestanol levels, but usually cholesterol levels are low. However, my husband's cholesterol levels were considered high for someone with CTX. There is some good information on CTX at www.ulf.org and at www.ctxinfo.org.

I hope this helps!

By serendipity
Posted December 19, 2008 at 11:04 pm
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Okay.... more catching up on replies......

Loie -
Yes, Hubby has twitching at times.
No need to apologize for venting - done here, in a supportive environment, it's good for the soul.... :)
Thanks for sharing.....

Pepper -
He has had the Elavil before & is currently on the Valium. I don't think that he's ever been on Trazadone - I will definitely have to ask about that one.
Yep - I've read that article....
Thanks! :)

Brown1964 -
Thank you for your kind words and comfort. :)

Patsee -
How are you? Did your friend check out this site?

Jacksonskf -
Hi - I'd be happy to give that to you. The Neurologist that we currently see & who diagnosed Hubby with SPS is:
Dr Gabriel Tatarian
1015 Chestnut Street, Ste 821
Philadelphia, PA 19107
215-922-1801
(I sent the info to your AOL address, too.)

-----------------------------------

I will try to write more, later. Hubby has had some weird new developments, & I need to find the words to describe....

Thanks for listening.....

-Serendipity

By serendipity
Posted December 19, 2008 at 10:46 pm
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Wow - I haven't replied in so long.... I have a lot of catching up to do!

RT -
I am sorry to hear about your wife. I hope that she is doing okay.
Thank you for asking about my husband. I'll try to post an update once I'm done replying....
Our Neurologist has been able to drastically cut down his meds. He is now only on:
Adderall, Lexapro, Levoxyl, Nexium, Oxycontin, Oxycodone, Valium & Wellbutrin
His legs and body don't feel heavy so much as they do stiff & sore & stabbing at times.
He does still have his reflexes. To me, when the Neuro was examining, it looked as though his worse side (left) had the more exaggerated reflexes....

DiamondInTheSon -
Thanks so much for sharing....
I hope that you and your husband are doing okay.

Jeni -
How are you doing? Haven't heard from you in a while....

Tricia -
I agree - learning to keep your positivity is the best medicine....

Sport -
Thanks for the suggestion re: naltrexone.
I will definitely look into that.....

Jewel -
Hubby was on Tizanidine awhile back. The jury is out on whether or not it actually helped. The Valium seems to help a little....
Thanks for the info. :)

spswolf -
Yep - I hear you....

Jeni -
Whoops - there you are! :) Glad to hear from you.... No, we haven't been to Pittsburgh.... we do live in PA, tho.... :)
Hey - I hope that the stopping of the fentanyl helps you - let me know....

Tiny -
Sweetie - I am so sorry to hear about the board care. How are you? How is your husband?

to be continued..........

By jacksonskf
Posted December 2, 2008 at 12:29 am
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If you could give me the full name and phone number for the doctor in Philadelphia, I would really appreciate it. Thanks............still looking for a diagnosis................K. Jackson
Jacksonskf@aol.com

By patsee
Posted November 25, 2008 at 1:37 am
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i know someone who i met in hospital on the neuro ward just recently with stiff persons syndrome he has a terrible time. we both live in australia. and i know its a rare condtion.
it was at first thought i had it but after a spinal tap it was ruled out and i suffer from propriospinal myoclonus my friend is having treatment intravensously on a regular basis at the moment. and also suffers from migraines which i think are called sunked. i am not sure.
i have stiff muscles from my condtion and it is very similar but i didnt have the gad anti bodies on the spinal tap. I also have a teriible movemnt disorder, and cant walk without aid anymore. though before hand i had relapses and remissions. even at one stage MS was consdidered. my proprispinal myclonus is usually bought on by spinal injury but that wasnt to be in my case, the only cause i can think is that because my condtion effects the spinal cord and all the signals get mixed up coming from my brain down to my feet. hence why i cant walk unaided was caused by a virul infection of the brain in 2004.
i was told 3 and half years ago i had myclonic epilepsy which has been a big shock to the system after having to spend months in hosptial over the past year being treated in correctly. thinking it was epilspesy and now doing a 2 month stint. and having to have rehab and then going through numerous tests to find out what was arong with me and my disability. ,
i am postive things will get better though my prognosis is unknown. and i am on an abudance of tablets. to keep me going. and soon to be doing more rehab at a closer hospital but my life has changed . all as i can say to you all out there is keep positive no matter what thats whats got me through ,the different diagnosisis and finaly the right one has been found after three professors opinions. take care and i wil keep in touch and hope my friend who suffers from sps will find us at team inspire.

By stevebro
Posted November 24, 2008 at 10:08 pm
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sure
she's Dr Beth Murinson. I don't know if your insurance makes you get a referral, but she's a great doctor. Doesn't want to overmedicate, just take the simplest course for the symptom at hand. I believe that her phone number is still 410-502-0702. It usually takes a while to get an appointment because she does research, too.

Have you gotten your aGAD measured - your doc could get that done, but only certain labs do it.

Best of luck. I find myself laughing at the strange ways I move, even with meds. I keep meaning to meet the PT who she recommended.

Stay in touch,
Steve

By prry44
Posted November 23, 2008 at 10:09 pm
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Hi Stevebro
you mentioned you had Doctor at Hopkins who specializes in SPS and from reading everyones descriptions that sounds an awful lot like what I suffer with too. Would you mind sharing the name of this Doctor on this site? I think I would like to make an appt to see her. thank you.
Wendy

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