A lucky story GBS/MF mixed
January 9, 2017 at 7:03 am
I self diagnosed via Google on the Monday 28th Nov and confirmed with GP that I had GBS. Entered West Mid Hospital via A/E on Wed30th and was tested for a week. However a Neurologist on the Thursday1st Dec diagnosed GBS with M/Fisher mixed as I had no tingling toes at that time. I had crashed to a crumbling twitching heap by the weekend ( when of course no Medical assistance is available). Monday 12th Dec started IVG for five days to 17th Dec and remained in hospital with general progress from bed bound and a twitching mass with frame to toilet to being discharged on 21Dec.
I am 73 years old but fit, used to swimming twice a week sometimes three. Today Monday 9th Jan I have double vision with Prism glasses and one eyelid open on its own and the other a bit on the lazy side at 30% but taped open for a while. I have a slight tingling in my tongue and I think my saliva glands are over active.I can walk and catch a bus but am a little wary of balance when turning quickly. I don’t sleep well just toss and turn all night and get bouts of “I have to lay down and rest for an hour NOW “.My hips are painful when sitting down for longer periods when watching Tv for instance
I have documented dates because having read some of the horrific situations some people find themselves in I count my self really lucky so far. This is not meant to say anything other than I definitely crashed with this horrible thing and it reduced me to nothing but my `I believe my faster recovery may be due to being fit and diagnosing my condition very early then seeking help with it quickly and pushing for fast IVG treatment as I was sure this was the best way out of this.I have a very positive attitude and I will get better as fast as anyone can but of course my age may be a factor in this. I am currently taking only Gabapentin three times a day and Naproxen twice a day
I really hope that you all get better from this terrible syndrome a.s.a.p. and return to normal life with your friends and families. Good luck and thank you for forums like this so we can share experiences.
January 10, 2017 at 7:34 pm
following on from my post above Jan 11th left eyelid worked on its owm followed today the right one startedto open when asked.This on is a bit less thn the first. Ihave read a lot about IVG on here and risks involved. My own view from my limited experince here is get it as quick aspossibe because waiting seems to allow untold damage on an exponential curve and surely must be worth the risk. I waslucky so far.
When doesoe start light excercise asi dont wat to do damage a opposed to good ?
January 10, 2017 at 9:47 pm
Yes David, you hit on the key. Early treatment prevents deep nerve fiber damage. Meylin can usually regenerate, axonal damage is another story.
Don’t exercise beyond fatigue, this can place too much stress on already damaged fibers, causing a little more damage or hamper nerve fiber regeneration. Take it slow, let the body do its repair work. Get some baseline strength tests and ROM tests. Then you will be able to measure improvement over time.
My diagnosis was similar to yours GBS/CIDP/MFS. I’m still wheelchair bound due to too much axonal damage. If I had only started PE right away, I believe I would still be walking today.
Best of luck with your recovery!
January 11, 2017 at 7:16 am
I am so sorry to hear that you are still chair bound. My reason for documenting my situation was to give my own opinion from my own experience and it just seems logical to me that given IVG stops the T cells doing more damage the longer you leave it the more damage is done. In fact here in UK there are no clinical staff on weekends which in most peoples opinion is crazy. In my case I lost these two days before the IVG was administered otherwise it would have been 5 days from contracting the syndrome to IVG. Those two days were exponentially bad and the difference from Friday to Monday morning when I saw Consultant was frightening. This is what I base my opinion and advice upon.
I really wish you all the luck in the world Jim with your recovery as this is a terrible thing to happen to anyone and it seems hardly anyone in the general public has even heard of it, I had not.
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