I block myself out of pictures also. When people say “I don’t see anything wrong with your face” I want to clock em for lying to me. I have had some reletives tell me that they see a difference and I appreciate their sincerety.

Schel

[QUOTE=Mike]I’m just astonished, both through my own experience and the experiences related by so many other participants in this forum, at the ignorance and stubborness of ER docs and PCPs when it comes to this illness. Granted, Miller Fisher is an obscure variant of an obscure condition, but you would think they’d have enough training and exposure outside their own specialties to at least recognize it as a serious neuro condition and steer patients in the right direction for help. The constant litany of “it’s all in your head”, “it’s just anxiety” or “it’s your allergies acting up” that seems to run through all the posts on this site is infuriating. Are docs just too proud to admit they haven’t got a clue and punt the ball to someone who does? It makes me wonder about all the other things besides GBS/MF that I’ve ever seen a doctor for. When they’ve treated my various headaches and upset stomachs and chest pains and the like, have they just been making it up?[/QUOTE]

Mike,
It is a sad thing. I am a nurse in a clinic, and have worked long term care and hospital. Now that I have seen how the whole thing works, it is sad, the bottom line comes down to $$. Some docs are better and some are not so understanding and there to get you “in and out,” and collect their $$. I do not have much faith in our ER docs, they are what we call “RENT A DOCS” this means they are highered from a “POOL” like a nursing pool. So that means they get the bucu bucks and there is nothing for them to get attatched to because they are basically there to fill a spot. Work their 8 or 12 hour shift and move on.
Sad isn’t it?
I could go on and on, but I am tired and need to hit the hay.
Take care.
Schel

[QUOTE=csauls]During the last week or so of March 2003, I developed a dry cough. A few days later my tongue became cold sensitive. I then developed problems swallowing and my feet began to “tingle”. On the morning of April 2, my face was partially paralyzed. I could not smile so I knew I was in trouble and to the emergency room I went. I was given a battery of tests and admitted to ICU. Slowly and surely, I lost control of the muscles from just below my neck up. I lost the ability to swallow and had to be suctioned. Three despairing days later, I was placed on a ventilator. A few days after that a trach was placed. I felt safe for the first time and began my recovery. My eyes were set in the closed position, I could not speak or breathe. However, I could write and my mind was clear and unaffected. I was able to give instructions to my grandson to take care of my affairs. My grandson did research on GBS and the statistics were favorable and gave me hope. As all of you know, Hope is a very useful tool to have in this condition. I was in ICU for about 3 weeks before being transfered to the hospital’s rehabilitation unit for another 30 days. My diagnosis was Guillain-Barre, Miller-Fisher variant.

It has been 3.4 years now and for the most part I have recovered. I still lack complete control of my tongue and my speech is somewhat impaired. I do have some upper body weakness but I can eat, swallow and breathe on my own and for that I am grateful.[/QUOTE]

I am very glad that for you your ER took you serious. God bless you for all you went through and stiil have to go through.

My ER said I was drug seeking and said there was nothing they could do for me and sent me on my way. By the next day my whole face was paralized and they still said it was me. “Anxiety” I have little faith in the Minnesota Health care system.

Take care.
Schel

[QUOTE=Sally Sobieralski]Jim – since there are not that many Miller Fisher patients – how are you doing now – from my reading the info. they say 97% of the people recover 100% within 6 months – I am now going on 8 months and feel the same I did at the end of 4 months – mainly fatique and numb face, mouth, teeth and tongue with a burning sensation. I am 59 yrs and have no idea how I got it.
Sore upper arms and back at night when I get tired.
Thanks,
Sally[/QUOTE]

Sally,

I was initally diagnosed in July 2002. I would like to know who “THEY” are. I am in no means coming down on you, I just know that no one GBS patient is the same. My unknowledgable Neuro told me the same “6 months” and he also said that I would be better without treatment. Well was he wrong!!! (A real idiot!) I got worse without treatment and now am suffering with residuals/unsure if I am getting it again.

Every time I go on on this subject, I want to make him suffer as I do because he had the empathy of a rock.

I hate this ride I have been given, but if Doctors and Neuros would be a little more educated in this maybe it would be a little more tolerable for all of us.
I am just venting and not mad at anyone here, I only have prayers to offer all who suffer with this like I do.

Thanks,
Schel

[QUOTE=ktwomack]Hey Canukgirl,

We’ve talked before. I read the literature that you told me about and I had an “ah-ha” moment! I was never formally diagnosed with Miller Fischer but now realize that I most certainly have every single symptom, including residual facial paralysis (mostly on the right). I have regular spasms that are not controlled with meds. I also have dealt with the lower extremeties weakness, mostly in my knees and ankles. I have occasional falls and have resulted in wearning only low or no heeled shoes to prevent damage due to a fall. This is all after 5 years of “recovery”. I can’t stand to look at myself in pictures anymore…..there is only a lopsided smirk left. KT[/QUOTE]

I am with you there! I hate what I look like now!
Schel