I had Miller Fisher
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March 26, 2007 at 5:48 pm
I have a problem and see if anyone has experienced this. 20 years ago I was working at a band camp and one of the girls got sick and was sent home. Two days later I had a mouth full of ulcers. I went to my family doctor and he treated me for that and it cleared up. About three days later, I noticed what I was drinking was spilling out of my mouth. It had felt a little numb but didn’t think anything about it. I was in Hattiesburg, MS and had to travel back to my doctor in Meridian, MS, and my whole face was numb. I could not smile, wrinkle my forehead.My doctor sent me to a neurosurgeon since Meridian did not have a neurologist. He decided to admitt me to the hospital and said I had Bell’s Palsy, but as my mother and I was waiting for me to be admitted, I passed out and she said that my arms and legs started drawing up like in a fetal position. I could not talk, and could only swallow liquids through a straw placed at the very back of my throat. Also I was having severe leg cramps and the sides of my face was hurting so bad. He kept me for about three days and dismissed me telling me that it was only Bell’s Palsy and would clear up. I kept having severe leg cramps, felt like my arms and legs weighted a ton. The neurosurgeon said it was all in my head and I was making the cramps up. I decided to go to Jackson to see an neurologist, and it said I agree with your other doctor it is Bell’s Palsy. I had not released my medical records to him. That was just disappointing so I went home to just live with it, because I had two young sons. As the years went by I was so tired I could hardly move around, still having severe leg cramps, can’t wrinkle my forehead and couldn’t hardly walk around, several people told me it sounded like MS. I went to Hattiesburg, MS to Dr. Hartwig and he told me that I had Miller Fisher Syndrome and that I had 25 percent paralysis on my left side and 20 percent on my right side, plus I was having severe Migraines with muscle spasms. I went home to live with this and proud that I wasn’t going crazy and it was all in my mind. That was about 10 years ago. I am now 55 and when I move or get a little bit tired my legs just won’t move. I went to a Neurologist here in Laurel and all his test came out normal but he said I had major nerve damage to my legs and arms and it would only get worse. I now have fatigue, my whole body feels like it is coated in cement, my eyes stay blurred (much more when tired),and can’t really do my duties around the house. At least I have a great husband who has stood beside me through this and is now doing my housework and I can only lay around. I am still trying to walk as much as possible but when I do I feel like I have run 10 mile race with the fatigue and the muscles in my legs feel like they are extremely tight and hurt. If anyone has had some of them same problems I would love to hear from you. Oh, my last neurologist said he had never heard of the Miller Fisher causing problems this long after, but he had no other explanation and that was probably what was wrong, but get prepared for everything to get a lot worse.
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March 26, 2007 at 7:53 pm
Hi Joyce,
Boy, all this sounds tough. The thing I’ve found is that every one of us reacts to GBS and Miller Fisher. I had MF 2.5 years ago, and have some residuals. The problems is that we just don’t know what goes on. Get a neurologist you are comfortable with, and listen to your body. Do what you can and let the rest go. -
March 26, 2007 at 8:44 pm
joyce,
it seems that a # of gbsers, [MFsers also], experience things that are similar to yours. it has been likened to post polio syndrome, not that it is so. so far i have not heard anything to hinder this post gbs problem, although like victoria said, rest more. keep in mind that it may also have nothing to do w your gbs & its aftermath. wish i could offer more. take care. be well.
gene gbs 8-99
in numbers there is strength -
March 27, 2007 at 12:24 am
Thanks for your encouraging words. I just feel so down and depressed most of the time. What really bothers me, is when I feel like I can’t put one foot in front of the other, people will tell me that I look like I feel so good. I don’t want any pity, just respect. As stated, I haven’t used my electric chair at times , because I know someone is going to have a smart aleck remark about walking one time and then riding around. The only reason that I think it is the MF is that ever since I had it, my arms and legs feel real heavy and I have been so tired all the times along with problems with eyes. I am starting to feel some of the tinging around my mouth again. It doesn’t help that we have my mother in law living with us in a single wide three bedroom trailer but we can’t do anything else, until she can not walk at all or be able to feed herself. We don’t have the money to pay for it ourself. With Mississippi cutting off a lot of seniors (my mother-in-law) included it is really making it hard to afford to do anything including buying all the medicine and no she doesn’t like me. Sorry, I didn’t mean to rattle on.
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March 27, 2007 at 6:53 am
joyce,
consider an antidepressant? take care. be well.
gene gbs 8-99
in numbers there is strength -
March 27, 2007 at 10:49 am
Gene thanks for your uplifting words. I am on three antidepression medication.That is part of this problem too. I don’t mean for my post to sound “pity me” that is not what I meant. I am just looking for answers and wondered if anyone else and had anything similiar. I have had one person who worked with my husband to say his father-in-law has been left with problems, several years after GBS. I have just receive the information from the GBS Foundation and just know really getting some information on it. In the past no one could give me much information except that it left you with paralysis and unable to breath. I have had problems all these years with falling for no reason, like my legs just went out from under me, having trouble walking very far and the heaviness of my arms and legs. Now it is getting hard to walk much at all. I believe in God and know that he has a purpose somewhere. I won’t keep posting and bugging everyone, I just thought maybe I could get some answers to help me and some support from people who know what I am talking about.
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March 28, 2007 at 12:48 am
joyce,
i don’t know all that much abt antidepressants, but are 3 kinds at the same time ok? you might want to look into it. take care. be well.
gene gbs 8-99
in numbers there is strength -
March 28, 2007 at 4:47 am
this is just a thought, me thinking aloud and hopefully coming up with something that may be helpful …. they say if left untreated, most people will eventually recover from GBS. IVIG and plasma. are given to halt the damage to the nerves so if someone was not diagnosed,it would make sense that even though they may recover to some degree, thjat there would be a good chance that significant damage would have been done to the nerves. perhaps this is what happened in your case, and that your ongoing problems are as a result of the damage done all those years ago.
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March 28, 2007 at 7:35 am
Gene
One of the medicines for depression is Cymbalta, which is suppose to help with fatigue and one is take only 1/4 when the world coming apart some days. That happens when you have a mother-in-law living with you that don’t really like you very much. All of the information that I have been getting from everyone and the site has really helped me understand it.
In the past some of the doctors acted like it was all in my head and I was just wanting pity. That is not the case at all. It is just scary to fall with your grandchildren in your arms (happen twice), they were not hurt because as I went down I tried to turn and take the blunt of the fall. Also, if I hold a glass,ect. in my left hand I will drop it, or when I was driving my vision would go between blurred to double vision. I soon decided to stop since that was like someone driving drunk and that was not safe. Thanks everyone for allowing me to pour my feelings out on this board. This has helped me more than you can ever know.
Joyce -
March 29, 2007 at 11:54 pm
joyce, i know what you mean about venting. if you do it at home to the ones that dont understand then they think you are wanting them to fix it for you. when really all you want to do is get it out and talk about it. but you figure they are as tired of hearing about it as you are of living with it. i go to the doctor about once every 3-4 months. in that time i think we experience so many different things in our bodies that we would like to discuss with some one but some of the things seem so trivial after a day or so– by the time you get to the doctor you have forgotten about it or think against bringing it up with them. then i come to this forum and low and behold some one else is going thru the same thing or something very similar. my very best friend has ms and sometimes i think here in our world we are the only ones that realize the impact a long term disease has on a person. i hope you dont give up on finding out what is going on with you. i have just reaffirmed that the squeeky wheel gets the grease in my life in the last few days. i dont get upset very often but i have this week and you know sometimes people decide to do what is right just to shut you up. lol:D anyway good luck and dont give up. barbara 🙂
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