Glad you got a better neurologist! Maybe you can get some good PT and continue on the road to recovery!
Is it weird to be happy to have a very rare, painful neuroligical disorder? I'm just happy it is something that will go away. The doctor did not recommend physical therapy since I haven't had any significant period of time where I haven't remained active. Also, I work out a lot on my own, so maybe he figured it would be a waste of my copay. He prescribed gabapentin for me to try for the pain at night. He said he sees more cases of mild GBS than you'd think and that mild cases peak a lot more slowly, usually four weeks. He also said if you catch it early enough, there is a pretty consistent sign in the contrasted spine MRI.
Couple of questions for others who had GBS:
Did you have any spots that seemed more effected than others? The outside of my left leg has been consistently more noticably tight for several days.
Did you get sore spots that felt more like pulled muscles or bruises than nerve pain?
I too was diagnosed with mild GBS. Doesn’t feel so mild when you are pretty active then can’t do much. For me my legs were not effected until a month after my first symptoms. Just got harder to walk. Then I was just wore out. My right calf muscle hurt. Foot hurt to. That lasted for a few days. My foot feels better but my right calf still gets pain toward the end on the day. I also twitch in both calves and random other places around my body. Mainly in my calf muscles.
My gbs was diagnosed as Miller Fisher and I think was accurate. It came about 3 weeks after a serious sinus inflammation revealed by catscan during first visit to hospital, a 4 day stay which revealed nothing after cs and MRI. Bailed from that place before things got worse! Checked in to Seton Austin hospital 3 days later unable to walk. The neuro team at Seton in Austin jumped to the conclusion after finding high protein levels from spinal tap. I was on IVIg within 2 days, for a five day drip.
Double vision persists, but the pain has gone for teo days. I’m drinking green vegetable juice with scoops of probiotic and glutamine twice daily. Im no where near cured of course but attribute my resilience to good health and extreme luck. Its been a week since hospital release and I’m looking for a pt and knowledgeable nurlogist in my lame HMOx, in Austin. TX. Anyone in Austin with experiece to share please do.
Good luck rockthecasbah!
For the record, I do not believe I had mild GBS. I keep getting email updates that people are posting on here. A new neurologist told me even the slightest change in nerves would have appeared on the nerve conduction test. After seven months with the same symptoms and some different blood test abnormalities, I am now in the autoimmune disorder diagnosis.
No need to close. I just wanted to make sure that people who read this thread were not mislead, as I did not end up having GBS or CIDP. I was diagnosed with undifferentiated mixed connective tissue disease based on the presence of speckled antibodies in my blood, a positive rheumatoid arthritis blood test, and eventually the development of raynauld's syndrome. Goes to show you should always get second, third, or fourth opinions if you believe something is wrong.
mdolich said:
It sounds like you don't want to have members responding to this discussion. If you would like to have this discussion closed, then message me and I will close it. This is and open forum and so new members who see your discussion can post their experience's to your discussion. Like I said if you want your discussion closed let me know.
You say your now in the Autoimmune disorder diagnosis, GBS is and autoimmune disorder/disease, along with CIDP and it's variants. There are also other autoimmune disorders/diseases too.
rockthecasbah121 said:For the record, I do not believe I had mild GBS. I keep getting email updates that people are posting on here. A new neurologist told me even the slightest change in nerves would have appeared on the nerve conduction test. After seven months with the same symptoms and some different blood test abnormalities, I am now in the autoimmune disorder diagnosis.