10 years and counting

[sostressed]

So my problem all started when I was pregnant with my son at 20 years old. First I noticed a twitch that made my toe move and then the next day my other toe started to move in the same spot on the other foot. The twitching started to move upwards on my body and felt like a buzz under my skin. I was ready for the twitching to start in my upper body and face by a week and sure enough it happened. After 3 years I started to get tests done because I felt uncoordinated and getting feelings of falling..still nothing from the doctors.. they couldn't find a thing. 10 years later it's been getting worse, my breathing is affected and it's getting hard to breath and sometimes I wake up gasping for air.. my throat has atrophied although no doctor will believe me and it's very tired. I get twitching in my throat and tongue as well, I get feelings of my brain rumbling, it honestly feels like there's something up there moving and thumping around, it's discusting. I'm so frustrated with this. I just recently went to another doctor to check it out and he told me to go see a psychiatrist basically saying i'm crazy, he also said he could do an MRI but there would be no point.. NO POINT??? What kind of a doctor is this???? I have 2 kids i'm raising on my own and I get the feeling one of these days i'm going to be gone with no explanation, it's pretty scary for me.

[ohtobehealthy]

Hello and Welcome to the forum! this is a great place to find people who are going to understand what you are going through!

I too have a lot of muscalur twitching and weakness, I have a TON of problems and my chief complaint is with my throat. I choke all the time in my sleep and was recently diagnosed with sleep apnea. I have trouble swallowing and trouble with food and beverages so I definately understand there...

It sounds like its time to fire that doctor and get a new one! I know that is easier said than done, I have dealt with many doctors that have wasted my time and money. Was this a family doc? have you seen any specialists???

take care of you! 

[sostressed]

Hi Kristin, I have the same problem.. my throat too and neck.. it's very hard to hold my head up and my throat just seems like its disappearing and yes I choke too, yes i've seen neuros but they just end up saying i'm crazy.

[Samantha]

  to the Forum Sostressed

Sorry for lack of imput on my part, having a terrible time lately, so just a quick hello for now 

 
Sammy

[Samantha]

Sostressed
"Just after you had your son" and my thoughts were during labour perhaps there has been a pinched nerve (or something to do with the nervous system) so while you first felt it in your foot it could very well be a nerve dysfunction that's traveled upwards and causing all these symptoms.
Has any Doctor suggested seeing a nerve specialist ?  and have nerve function testing performed ?
It must be so hard going through this and raising kids, I cannot imagine how you cope   Do you have family near by that help you out?

Sammy
 

[kattsqueen]

HI honey,
may i suggest you make contact with the muscular dystrophy association,, They may require a referral from your doctor ask for one.. If the doctor refers you to muscular dystrophy association they will be able to refer you to a nuerologist with nueromuscular conditions which sound very much like what you are experiencing..

katts

[trancy221]

Hello sostressed

Your condition sounds really bad and I wish you a better health...

Have you ever thought of rheumatoid illness or lupus or something else in that direction?

In very rare cases there is also the possibility of having a latent Wilson`s disease, that`s a liver disease in which your body stores amounts of copper.Normally the progress shows up in child- or adulthood with neurological and liver problems, but I have read of a few cases with slowly progredient neurological issues and liver problems.

Good luck,
trancy