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….