Questions... and no answers...

[nightwolf_mk]

Hi everyone. I haven't been writing for a while. My symptoms got worse last weeks. My fasciculations are very noticeable now. I can see them in almost all the muscles of my body. Even gabapentin isn't working as before. I'm trying not to worry too much about the twitches, but opther things are happening. I feel pain in my joints and muscles. I feel like if there is "something strange" in my throath. I had had this symptom before but it wasn't every time. Nowadays this feeling is almost all the day. Only when I wake up my throath seems to be ok. I went to an ENT doctor and he saw my throath with a camera but according to him it's normal. He ordered a test to see deeper because it could be GERD, but I'm really confused. Apart from feeling this, I still can eat and drink and my voice is not different than before so I really don't know what to think. I'm so sad lately because all of this. Almost three years and no answers... Whetever it is, I can feel it is becoming worse, specially this year. I really don't know what to do anymore. The pain I feel is very strange. Even in the muscles of my head I can feel this pain from time to time. Some days ago I could feel the fasciculations inside my ear. I know it sounds crazy but it is true. This is affecting my life as never before and I don't know what to do. If I have als I think my case is uncommon because how could I have it for almost three years and the main symptoms didn't appear yet? And with my current bulbar symptoms I think that could it be the bulbar form. However, all I read about this form of the disease is not what is hapening with me, according to the articles I've read it would be faster than the other types... but I don't know.
Besides this strange feeling, I "hear" a sound coming from my throath when I move it. It sounds like if there is sand inside my throath that moves when I move my head. Even when I am walking I can hear this sound.
Again this had hapened before but not every time as it is hapening now. What makes me really sad is the fact that probably my parents will have to take care of me, and it is not right. They are becoming older and the natural order is sons taking cre of his parents, and not the opposite. I'm really sad and confused. Sorry for the message, but it is difficult to talk about this with someone else, sometimes I feel like they are thinking I'm crazy...
God stay with you.

 

[asantiago]

I'm sorry to hear you are going through all of this. Do you feel your doctor is taking your symptoms seriously? 3 years is a long time to have them. Maybe it's time you find a different doctor?

 

[Phil M]

Been treated for Lyme disease? Testing is not accurate.

 

[nightwolf_mk]

No, I haven't been treated for Lyme. I had a test to see if it is what I have but it returned negative. I went to many doctors here, but no one showed respect for me and my symptoms. They look at me like if I am some kind of crazy people. I think they don't listen to me because I'm very young and it's not in the normal age for these kind of disease. But I know that I have some os this because of my symptoms and the progression I'm having during past years.

 

[nightwolf_mk]

I did a test today to evaluate my swallowing, chewing, etc. The doctor didn't talk to me after the exam and by his face I think he saw something wrong during the test. At least some exam could begin to show a path to what is happening to me. I will get the results in two days and see what happens.

God stay with you.

 

[BethU]

Good luck with the test results. I hope it shows some answers.

Don't go too much by the doctor's expression ... some docs have "game faces" that they wear when they're doing tests, interacting with patients, etc. I think they're trying to concentrate while their minds are running through the possibilities.

 

[nightwolf_mk]

Thanks for your message. I'm not too worried about the result of the test. I know that something is happening to me, I just don't know what it is. I hope some of these exams can show what is my problem, but according to my symptoms I'm almost sure that I have some kind of neuromuscular disease.

Gos stay with you.