Robert B
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February 25, 2017 at 1:30 pmFebruary 25, 2017 at 1:13 pm
My suggestion is to stop asking him about it and just give him a normal diet. With MFS the fatigue is normal. Also once in a while I still feel a bit wobbly. Teach him to be well, not sick. Make sure he has sunglasses for out doors. His normal just means he needs to take rest breaks during the day. But he is normal. Life with MFS should just be a continuation of rehab. Excercises, rest, school, play.
February 8, 2017 at 6:38 pmI also live in Florida. Mine is different than yours, but what I have learned is that you really, really need to somehow go to a place where they have experience with autoimmune, neurological disorders. University of Miami, cleveland Clinic Hospital ( where I went) and University of Florida in Gainesville, are where you have to go.
MF, CIDP, GBS are all pretty rare, so even good doctors, who are not used to treating these things, will be more hit and miss. You may well end up having to go to one of those places where they deal with it regularly.
I had seen several doctors and was discharged from one hospital with no diagnosis, before I was lucky enough to get in with the experts. Literally when I hobbled in the door of the exam room, the docs first words to me were, Just by seeing the way you walk, and your eyes , you have classic Miller Fischer, but we will need to run some tests to confirm. And he was absolutely right! That after doctors and MRIs and other doctors were mystified.
You will find, when you get the right doctor, and know what it is, it is a HUGE relief.
February 5, 2017 at 4:17 pmI am glad it came all the way back for you!
February 5, 2017 at 2:10 pmI had MFS twice. Once in 1980 ( wasnt diagnosed, I was in school and didnt have insurance) and once recently (diagnosed).
If you are having the double vision and other symptoms, after being symptom free, tgis is a recurrence! You should see a neurologist who has experience with MFS
February 5, 2017 at 1:52 pmMFS and GBS are similar in that they are autoimmune disorders where various antibodies attack the nervious system. The diagnostic criteria for MFS is the presence of elevated IgG anti‐GQ1b antibodies. The only bad part is that the test for this antibody takes about 2 weeks to come back, so they typically begin treatment without knowing for sure.
Your Dr is correct in that the mechanisms and how theymay be related are not known
February 5, 2017 at 1:34 pmThat is very Interesting. I have also had bp issues since getting out of the hospital and rehab. Nobody has associated it with MFS. It is under control now, but I am on Two different bp meds.
February 5, 2017 at 1:24 pmYes! Fatigue is the last symptom to go away. It takes quite a while. Hang in there!
February 5, 2017 at 1:21 pmThe cause of the double vision for us is paralysis of the muscles that control eye movement. My double vision eventually got better. Doing eye excercises taught to me by my rehab therapist helped a lot.
I was also lucky to be seen by an optho neurologist. There are very few in the country. They specialize in double vision. I suggest you try and find one, as well as get rehab. Rehab is really important
