more symptoms after MF 8 years ago
AnonymousNovember 11, 2008 at 10:39 am
hi my name is anna i am in my 50s and had mf 8 yrs ago hospital , lumbar punc. and all mf symptoms but all cleared up without any special treatment within 6 months although have always had lack of previous stamina and all sorts of vague mf symptoms over the years ,bad foot and leg pain,numbness one foot,tingling hands feet,worse when tired , doctor said amitripiline and of course an anti depressant as i was in anxiety state which he thought was my problem as both he and nearo consultant said gbs/mf does not come back nor do symptoms…..seemed to start with virus last year again after bad cough just like original illness did. then felt better but this year suddenly sick ie vomited 3 times one week apart.doctor could not understsnd also bad permanent nausea feeling , had endoscopy but clear wonder could it be a nerve problem again as have burning feeling throughout body and in my throat also sometimes break out in a sweat without reason , feel something stuck in throat and indigestion but its not nerves..also consstant trembling inside . can anyone help many thanks anna
AnonymousNovember 11, 2008 at 6:37 pm
You know your body better than anyone else. Stay on top of things and make sure your doctor takes you seriously. I can’t answer your questions directly but I am sure others will respond and be able to give some insight.
Goodluck and we’ll look forward to updates.
AnonymousNovember 11, 2008 at 10:18 pm
That is how my MF originally presented. I was lated diagnosed with CIDP. And I am not sure that they are definatly positive on my DX. But wow Your symptoms Brought back Flashbacks and gave me a chill. Don’t give up and Don’t let the doctors double talk you. You know your body ask another nuero if you need too. hopefully you get answers soon. keep us updated please and take care of yourself.
AnonymousNovember 12, 2008 at 4:27 am
Gosh! Some of your symptoms almost sound like me back in June. That is how I got and boy does it make you feel bad. I had two things going on with me and one was Lupus and the other one was the Thyroid. Both made me sick as a dog. Stay on top of this with your doctors. Even if it means you have to start over getting testing. Could be MF starting over but then again other diseases can creep up on us as we get older making us think it is the disease causing our problem when it might be something else. But I wish you my best here and hope to see you well again! Hugs
AnonymousNovember 14, 2008 at 11:34 am
hi again with what are residuals or mf returning i feel worried about my situation not depressed my doctor tells me i am such a worrier and has had me on a seritonin stimulator anti depressant CITOPRAM 40mg and…… also 30mg of amaitrypiline as originally prescribed by my case neuro and it seems that the 2nd one does help with pain in my feet in particular but i am concerned about antidepressants as this one is designed to stimulate seratonin and my nervous system is prob already overactive??? can i ask you what are taken for trembling ,sweating ,numbness and in particular if you want to feel better what else . as i am concerned my doctor thinks , antidepressant is the answer .. would love to hear what you think
take care all of you
AnonymousNovember 16, 2008 at 4:31 am
I’ve had Miller Fisher just 6 months ago and still recovering.
Sorry, I don’t have any advice on the medication for the pain. I just wanted to show my support and say that other people in this forum have said that they got residual symptoms years after GBS. The symptos also get worse when you overdo it, so make sure you have plenty of rest. I also agree with all the others who have posted here. Make sure the doctors take you seriously and do more tests to see what’s happening in your body. If you’re not sure about taking antidepressants what about counselling, it may help, you could give it a try to see if it works. Also, you may want to consider complementary medicine and see if you can find a therapy that suits you and could help you with the pain.
AnonymousNovember 20, 2008 at 10:43 pm
Okay I found this which I think answers my question.
Although ascending paralysis is the most common form of spread in GBS, other variants also exist.
Miller-Fisher Syndrome (MFS) is a rare variant of GBS and manifests as a descending paralysis, proceeding in the reverse order of the more common form of GBS. It usually affects the ocular muscles first and presents as ophthalmoplegia, ataxia, and areflexia. Anti-GQ1b antibodies are present in 90% of cases.
Acute motor axonal neuropathy (AMAN) attacks motor nodes of Ranvier and is prevalent in China and Mexico. The disease may be seasonal and recovery can be rapid. Anti-GD1a antibodies are present. Anti-GD3 antibodies are found more frequently in AMAN
Acute motor sensory axonal neuropathy (AMSAN) is similar to AMAN but also affects sensory nerves with severe axonal damage. Recovery is slow and often incomplete
AnonymousNovember 21, 2008 at 6:31 am
Hiya,ive had MFS since march and it is almost impossible to find infomation about it because it all points to GBS,and a lot of my symptoms are very different.One of the main things that tell them apart is that MFS affects the eyes and eye movement…not much help but a little bit of info ………Take care x
AnonymousDecember 8, 2009 at 7:29 pm
Hi everyone! this is Scott [survivor 48] from years ago! miller fisher variant recoverer since august 2001! all of you can read my story @ [url]www.aboutgbs.com[/url] page #2 known as survivor 48. educational and funny at times but most of all actual reports from my brother and my doctor’s!:D
hope to talk to all of you soon!
AnonymousJanuary 5, 2010 at 11:58 pm
I have MFS version, could you explain in layman terms what you posted?
I started with my eyes blurring? and thought I had a stroke 4 days later, drove off the mountain 9 miles with the door open and 1 eye so I didn’t drive off the cliff. My legs were never affected, just eyes and balance.
Woke up with holes in me, couldn’t eat, drink,trach….
Read something the other night and “triggered” the dreams. Still not sure they’re not real. but why would they lie? I have the “earthquakes, shakes” and sometimes they are uncontrollable and downright embarrasing.
I was working out at the gymn, I had a “fit” a couple days before, but this one topped it, I left embarrased and just signed up again today. (Thank god for small communities).I was told I overdone it, am pretty active and was pushing it.
I will get better, one way or the other.
Keep the faith!
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