It actually did help a little with the pain, but not a great deal. The reason I stayed on it was that I have myoclonic jerks (I'm not sure if they're related to the other issues or separate), and it seemed to help with that. By itself, though, it never seemed to do anything for the stiff person syndrome. Once I added the muscle relaxants, it seems that the combination of Neurontin and muscle relaxants are helping, but either by themselves don't (I hope that makes sense). Let me know if I have to rephrase it again, as I'm not sure that was any more clear.

Jeff

Thanks for sharing your experiences.

I have learned a lot from it.

It also made me wonder if possibly your SPS is less severe (than it would otherwise be) because of the MG?

As both diseases have a somewhat opposing mechanism.

I think in the areas that affect both, they may have had that affect. The MG seems to be more bulbar, in affecting my eyes and breathing, while the SPS has attacked my back and legs, though. In the last couple years, strenuous activity brings the MG out, but I think the SPS has been with me since childhood and the MG is more recent, maybe because the SPS was never caught and treated.

I thought the SPS went back to about sixth grade, but my parent tell me that I had a gymnastics teacher who wouldn't take me on as a three year old until I was cleared by a specialist because he thought I was tight.

Interestingly, I do remember as a child that when my parents asked what I wanted for my birthday, I'd tell them a more comfortable mattress. To their credit, they tried a couple times, but never found one that was to my liking and then just thought I was overly sensitive.

Just thought I'd mention. Rainy days apparently still make me stiff. I can walk (as opposed to not being able move on rainy days), but rain definitely affects my SPS.

I find that many times patients have had some relatively mild symptoms (which were not seen as an illness) for many years prior to their diagnosis.

Its not always clear if those were indeed symptoms of the same illness, or if looking back it appears like that. Possibly there is some genetic propensity which leads to a mild abnormality but it only becomes clinically evident many years later.

We're finding that autoimmune/neuro diseases clearly run in the family. About half the extended family is asthmatic, I have an uncle with petite mal, and now I'm really worried that my cousin may have the also have stiff persons.

I really hope I'm wrong, but if she does, I'm not sure how to get my uncle to understand that benzos are a necessary part of the treatment. He tried to talk me out of taking them because his brother had such a hard time stopping them. I couldn't explain it in a way that he understood they're making up for a chemical deficiency in my body and I'll probably never have to get off them. I'm getting her an appointment with my doctor; hopefully she'll be better at explaining this stuff than I am.

As a kid, I have been extremely bad in sports, could never run like other kids, but there was nothing to suggest any medical problem. I was nicknamed "the professor" by my friends, because I always preferred quite activities.
My father and one of my brothers are "less fit" and it takes them a longer time to recover from viral infections. But both run, play football etc. with no significant problems.

20 years ago, following Hep. B vaccination I had "MG like symptoms" but those resolved on their own within a year.

15 years later (after leading a very active normal life) I ended up in the ICU with what appeared like a myasthenic crisis. As I had completely normal tests, this diagnosis was disputed by the neurologists.
My illness was eventually found to be a rare form of MuSK MG, possibly combined with congenital myasthenia, mostly involving my respiratory muscles.
Some of my studies also suggest mitochondrial dysfunction (which can be part of the MuSK MG or not).
The complexity of my illness led quite a few physicians doubt its existence.

Like you, I had to figure out quite a lot on my own.

Funny, I could never play baseball with other kids as my arm wouldn't go back far enough to throw a ball. My orthopedic at the time wanted to break and reset my shoulders. My parents said no. I'm really glad they did as my current ortho said there's nothing structurally wrong with my shoulders. Its all in the muscles.

I have both SPS and Myathenia Gravis and have had a lot of success with treatment through a doctor trained at the Mayo Clinic. USC and UCLA did not diagnose me nor know the latest treatment for success.

My Mayo trained doctor is Sharon Yegiaian in Pasadena CA and she has many SPS clients and is up to date with the latest treatment options. She diagnosed me with Myasthenia Gravis as well after a blood test at the Mayo Clinic which USC never did. USC told me to prepare for the worst with SPS diagnosis and we could try paraclisys, which is used as a last resort treatment.

Dr Yegiaian was able to stabilize me with weekly ivig, Cellcept, and Baclofen. After several months of being stabilized she thought I could reduce the Baclofen from 45mg to 40mg, but I had a relapse on the third week so she concluded that I probably have permanent nerve damage because of the delayed diagnosis and intervention. I have returned back to normal dosage and hoping to get results soon and coping with the aftereffects of high BP, heart rate, and severe pain.

I highly recommend finding a doctor from the Mayo Clinic in your area or meet with my doctor in Pasadena.

MG and SPS
 

i was diagnosed with MG 26 years ago. Ive been suffering from stiffness, and spasms in my therasic spine area, neck, shouldr and upper arms ever since my Thymectomy in June 2011. Now my knees dont want to bend without severe pain too. My GP is useless, i think he sees me as just trying to get out of work. This is the first ive heard of SPS and have just read enough to feel i have it. Im going to ask my GP for the blood test tomorrow. Im keen to talk more if you're interested .....