I think its over...

[anna1980]

For the 3 hours Im going to my neuro.Im scared.What to do if she will Sai, its not a ASL.Search, for another neuro?What to do I dont know exectly what to do after?And if she says it is ALS how to live further, how?Do medicine knows familiar illness with that kind of symptoms?

 

[patricia1]

anna when is your appointment with your neurologist? pat

 

[anna1980]

for an hour, but i think she is not a specialist in als.

 

[janf]

pray

please don't panic just pray, we all understand our hearts go out to you i will pray for God to give you peace. janf:-D

 

[cartman]

anna

you have to get yourself to a university that specializes in als, it is difficult to diagnosed and therefore there has to be all of the technology available to diagnosed. i went to university in st louis who had the expertise and technology.

cartman

 

[CindyM]

Anna- do you have an appointment with a neurologist? What day is this appointment? Let us know how the meeting with the neurologist goes. Cindy

 

[Al]

Hi Guys. Anna says she is from Poland. I'm not sure if she is still there because it's not in her profile but if she is it opens a whole new realm of where and how she gets treatment. I have no knowledge of the Polish health care system. Does anybody here? AL.

 

[anna1980]

Hi everyone.Ive been to my neuro and she said that she didnt see any bulbar symptoms (but I feel it I know there are).She said to me not to think about ALS because there she couldnt see any Motor Neuron demages.Im really confused.We've been talking for almoust hour and probably it is some kind of neuro infection, bacause everything started (except my headaches) with eyeball pain and 3-weeks infection in my throat- I didnt take any drugs).By the way, my muscles pain and fasciculation are gone.But still hard to swollow and and feel smth. is wrong with my tongue. She is a good doc. and has some patients with ALS.But Im not sure what to do now, wait and see what will happen and than see another neuro? In Poland we dont have much ALS specialist, because its very rare disease ,1000 ppl are ill.Moreover there is a one clinic, which is diagnosed that kind of disease.please, Im waiting for your opinion.

 

[liz]

Anna -

Can you get to the clinic that specializes in ALS? The first couple times I saw a neurologist (also a good neurologist, well regarded in the community), he proposed the possibility that my nerve damage was from a very localized infection or inflammation. It wasn't until a year later when more symptoms appeared that he began to suspect a motor neuron diseaseand referred me to an ALS specialist. After that it only took three weeks to nail down a diagnosis. If you don't have ALS that would be great to know and if you do have it hen you can start getting the proper care as soon as possible.

Liz

 

[anna1980]

Yes I will try to fina a one in Poland and make an apppoitmant.But Lis did u have some strange sympotms like me?I did have throat inflammation and at the same time i was trating my 3 teeth than appears terrible eye pain and all the rest.Mybe I just tryin to cheer up myself.Well i have to see a specialist. The strangest thing is that it starts with the left side and now its the right side.And the main thing that I felt smth. strange in my tongue before it "was unable to move".It means I felt cold and pain and than suddenly I was unable to move it.

 

[anna1980]

i have another question to ppl with bulbar ALS.Is it happen syddenly?DO you had pains or other symptoms?Please Im waiting for reply.

 

[liz]

Anna,

My symptoms are limb onset beginning in one hand and now spreading to the other hand and my legs. No bulbar symptoms yet.

Liz

 

[patricia1]

my bulbar symptoms started with slurred speech very mild and progressed and has been the same for about three years never had pain .now arm weakness pat

 

[anna1980]

Pat but did Yoe feel in the begining there is something wrong with your tongue, thst it doesnt move like it should.I feel it a nd I feel like Im having to big hole in my throat (funny).

 

[patricia1]

yes it didnt move quickly side to side and I felt a lump in my throat And I used cough drops thinking it was a cold and post nasal drip That is gone now the tongue is very short ,scalloped and thick looking. pat