to talk about it with someone else who has the disease/.
Hi docmaus,
There is treatment. i take valium and i have IVIG infusions every month. This helps me a lot. have you seen a neurologist? you are not alone. I have net quite a few people that have this illness including me. If I can answer any of your questions e-mail me.
Shirley
Do you scream out from the pain of the spasms? Are they all over? I am diagnosed with fibromyalgia and then something else tht causes horrific spasms. Every doc who has seen me have one sayys I never have seen anything like that before. One said SPS.
so here i am.
Help! Do you have screamer spasms? I will just be ok and bam i scream so loud it scares everyone and it hurts soooo bad. Mostly across the diaphram but all over my body legs arms trunk, horrible migraines.
have them test your gaba to see if it is sps.
I second docmaus's suggestion. Any good doc can order the blood test - gaba or agad (I know that mine was called agad). It's worth a google search. get past the regular docs and get a neurologist involved. Keep us in the loop!
Steve
I have SPS, I was dignosed with a blood test for GAD and a nerve test. I'm on Bacolfen and it seems to help a little for me. I started on valium and that did nothing but I know that valium works better for some people than the bacolfen. There are treatments but no cure. Although the treatments aren't great they do make life a little more bearable.
tricia
I had the gad test and it was 1. Which is ok. I have had Ivig shots every two weeks for 12 shots last year at a fibro clinic in pittsburgh. 6 hours away! They also gave me a lot of suppplements and meds and IV's for antiviral and back and muscle. I felt good then a lot of the time. The IVs helped the pain but the shots put color in my face and I was doing more. The only bad thing was I got very nautiaus and the worst migraine pain ever during the treatment time. Thank god they are back to horrible down from please just shoot me. It was after that the spasms increased. I have had them for 7 years and they progressed from occasionally I got a "catch" in my ribcage and I let out a tiny ahhh. to at times 30 minutes of full out screaming you would think somebody was torturing me. I have even wondered about paranormal. It is so bizarre. I have seen 3 neurologists the last of which mentioned sps after seeing a spasm but basically said "good luck with those spasms it looks really painful" I looked it up and got the test. They put me on baclofen and now valium is half way working.
is the falling thing a balance problem or a weakness problem or a spasm in the legs? Mine seems to be balance and that can be caused by the valium. I wondered what it is about. please reply I love you guys so much. It helps more than you can imagine to know maybe I am not dying.
Jeni-screamer
I am having the test again and another muscle test as well. I'll keep you informed on any new info about sps. B12 will help with sweating. Use the sublingual dots.
jeni
you should have an EMG as well. that may be what you mean by the muscle/nerve test. SPS can be misdiagnosed as fibromyalgia. you can be positive for SPS with either a positive GAD test or a positive EMG. Some of us are "lucky" enough to have gotten positives on both. And there is treatment Docmaus, just no cure they've found. and there is the chance that they could find a happy medium as far as meds for you and you may not get worse, according to my neuro.
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