I believe I have ALS
Posted , 4 users are following.
For 5 months now I have been displaying symptoms and signs reflecting ALS.
Muscle weakness ,atrophy, spasms. Cramps fasciculations in both legs and arms. Difficulty swallowing and breathing, loss of voice. Serve weight loss of 50 lbs and chronic fatigue and constipation. All my blood work has come back excellent and gastrointestinal workup for constipation clear. I recently had a EMG, which the report said normal. I read that 40% of EMG give false negatives. With this rapid decline. I don't know what to do or will I ever find an answer! Help
0 likes, 13 replies
kira_22267 luther48782
Posted
I recognize you from the forum. I'd recommend getting a good GP and going from there. I have many ALS symptoms as well, fasciculations, weakness, scalloped twitching tongue, etc. Yet the doctors cant find anything wrong. I too have had a clean EMG and a hospital work up. But I'm getting set up with a neuromuscular specialist-thanks to my GP who wont rest until we have answers. Hang in there.
luther48782 kira_22267
Posted
Yes, I have appointment tomorrow with my GP. I'm so tired of being told I'm ok when I'm not and that it's all in my head. Like I just decided to lose function over my entire body on my own! Thanks kira
kira_22267 luther48782
Posted
Good-and if they wont listen get a new one, because I was told this was in my head at first too. I am almost 4 months in and feel like crap everyday and I am tired of it. 😕
luther48782 kira_22267
Posted
I hear you. Tired of clean EMG no ALS. Then I'm told no, Clean Emg no ALS when you have no clinical symptoms. I will keep you updated and you do the same.
luther48782 kira_22267
Posted
Just checking on you. Have you made any progress? None on this end. Don't see Neuromuscular specialists until February. Can't breathe nor eat solid food. Can't talk. Entire body trembles all the time and yet there's no urgency ! All appointments are two to three months away.
kira_22267 luther48782
Posted
Nope..I dont even have an appointment set up yet-they said theyll call when they know (its been 3 weeks). I do see an ENT sooner though-hopefully next week. I had a bad bout of tongue twitching a couple days ago but today its hardly there so Im just so confused
luther48782 kira_22267
Posted
I see a ENT Monday. I will let u know what happens
luther48782 kira_22267
Posted
Seen the ENT. He said everything is fine. Yet, I still have a hoarse voice? I don't know, but I'm gonna keep seeking answers
carol95962 luther48782
Posted
Are you being treated by a top notch neurologist?
luther48782 carol95962
Posted
I won't see a top notch Neuromuscular specialist until February. Don't think my body will make it that long.
carol95962 luther48782
Posted
Are you seeing a top notch neurologist?
luther48782 carol95962
Posted
They are not easy to get appointments with Neuromuscular specialists, it takes months and with a clean EMG, it takes even longer. At the rate of my deterioration. The coroner will give my diagnosis.
luther48782 carol95962
Posted
The neurologist I seen was a thief no he was a waste of time.
Now I am seeing a top neurologist.