New here and diagnosed with SPS
 

I don't know anything about SPS and I am browsing the web looking for treatment options etc. Does anyone suffer from this? Thanks.

Sps
 

my wife has been dealing with SPS since October of 2013, is having IVIG treatments and diagnosed with HepataCellular Carcinoma (liver cancer).
Her other autoimmune issues are:

diabetes on a a pump.
cecliac disease
thyroid disease (removed)
ulcertative colitis (colon and large intestine removed)
With all the above except SPS and liver cancer she lived a full life and was a grandma , horse riding jockey in 50 mile endurance horse races. The SPS and liver cancer have been life changing at the moment.
I am throwing myself into learning everything I can for my wife of 33 years.
are you getting IVIG?
We are living for the moment and believing for a miracle.
RidesBlues

Hi! Good to hear from you. I am appealing my insurance company because they denied my IVIg treatment at the beginning of January. Right now, I am on baclofen, (was on zanaflex but I developed an allergy to it, made me hallucinate!), remeron, steriods, cymbalta, lexapro, subuxone (pain), and Iron. Keep in touch!

CLstewart I was diagnosed with this a few years ago but have suffered from the condition many years before I got diagnosed. I have had a difficult time finding effective treatment for it. Tried IVIG a couple years ago and got aseptic meningitis after 5 treatments so had to discontinue. Tried plasma but this made my neuropathy much worse, as I have also been diagnosed with autoimmune autonomic neuropathy and motor neuropathy.
I have tested positive for GAD65, N-Type Calcium Channel antibodies, GD1a ganglioside antibodies, and positive skin biopsy for small fiber neuropathy and have consistently elevated CPK levels.

It has been a frustrating road and I have unfortunately been deteriorating over the years due to difficulty in finding treatment. While I do find some temporary relief with benzos and alcohol it seems that the symptoms come back with vengeance when the drug wears off. Overall i end up much worse for having taking even small amount. Even with continued dosing i find there is an unavoidable backlash in symptoms when using Gaba enhancing drugs, particularly benzos so I've opted to not use benzos on a regular basis, however i do use it sparingly on a needed basis for temporary relief of bad spasms and contractures. Will most likely be retrying IVIG again sooon and hope to see some improvement with this. Prednisone has not been much help.

Wish I can offer you more insight or suggestions but as you probably are aware it is not an easy condition to deal with. In my case I feel there is a trigger to all the antibodies, the Stiff Person, and the other autoimmune symptoms and i believe it is either being caused by an infection, likely viral, but due to very limited diagnostic tooling in the area of viruses I don't feel too hopeful that it will ever be found.

Hoping to hear from more SPS'ers on here about what has or hasn't worked for them. Have you found anything helps your symptoms? Also curious what you think may have triggered this condition for you?

I am new here also, and was diagnosed a little over a week ago, so like you I am looking for information and answers pertaining to SPS. I also have demyelination disease and a cognitive disorder that the Dr says is like Alzheimer's but isn't Alzheimer's. I have only found this out recently and probably wouldn't have found out if it hadn't been for the atrophy of left leg. I also have anxiety which from what I understand is pretty common with SPS. I hope you find the answers you are looking for.
Good luck.