Bulbar?

[Wmjsmith]

I've read the primer thread and am not sure what to do with my symptoms:

Symptoms began with swallowing problems last July. I'm 43 y.o. and have been an active athlete my whole life. Initially diagnosed esophageal motility disorder of unknown origin. Barium swallow was normal, manometry showed motility problem. I am on a mostly liquids/soft foods diet. Initially lost 60 pounds, has leveled off since January.

I have been seen at Mayo for swallowing - no solution, not achalasia.

In January very suddenly I developed pain throughout my body and muscle fatigue/weakness. This never goes away. I hurt all the time. I can lift a gallon of milk, but it makes my muscles "burn". I can shovel snow for 5 minutes, but my muscles tremble/shake afterwards. I have muscle atrophy in that my muscles are smaller than they used to be, but smaller symmetrically left/right. I get myoclonic jerking like crazy when I lay down. My feet and lower legs get a burning sensation at times. My coordination is "off". Everything is harder to do, nothing is impossible to do (getting dressed, walking up stairs etc).

I've seen 2 neurologists. Clinical strength is fine. Reflexes normal. Did not do EMG testing because I felt strong to them (I feel weak to me). They did not offer a diagnosis. One said, "sometimes we never know what's causing our issues". Recently saw a rheumatologist who diagnosed fibromyalgia. I've been reading about this and it doesn't feel right because of my swallowing issues.

Swallowing has gotten worse. Constant jaw pain/feels like my face is frozen or numb. Lips tingle often. My neck muscles front and back are weak and can spasm, feel cramped or feel "pulled". Feels like someone is squeezing my throat constantly. My throat "hurts" all the time.

My tongue functions normally - up/down, side to side. Looks normal, no weird twitching. I can whistle, speech is fine. I stumble over words when my jaw feels frozen/heavy.

My throat hurts. My jaw hurts. My muscles hurt. The fact that I have pain associated with these issues re-assures me my problems are not ALS related - ? Is this a valid assumption? Can you have bulbar onset with only swallowing problems but normal tongue functioning?

 

[lgelb]

This doesn't seem neurogenic as MND is, but rather a systemic disorder or one of muscles. I would get a 2nd opinion at an MDA clinic.

I agree with you that FM does not seem like the answer.

Best,
Laurie

 

[Wmjsmith]

I guess today I'm freaking out because my right thumb has been feeling weird, strained, weak and now shows atrophy compared to the left. I don't know what the heck to think. My hospital system doesn't have a neuro and the other one in town can't see me until May. I'm going to see my primary in a few days and see if he will refer me for an EMG even if its overkill to ease my mind. I'm not prone to anxiety or fear, but my body has been so "off" - weird cramping and tingling and myoclonic jerks and the weight loss. And mostly the trouble swallowing. Ahh....

 

[Wmjsmith]

Saw my GI. She said the motility cannot be solved and I will end up with a feeding tube. She said not to come back she can't help me. Swallowing basically is non functional today. I had some sort of episode over the weekend. My spine and left leg developed an electric buzzing feeling. Lasted for hours. Then spasms developed in my right leg where my leg actually jerked on its own. At the same time I got the electric feeling in my face. Then my bottom lip twitched like crazy and wrong limp. Like it lost its bulk instantaneously. My jaw is sort of frozen. My throats muscles are spasming. Driving my car has become difficult. Walking is difficult. Arms and legs are fatigued instantly. I'm atrophied In the neck arms shoulders and hands. But everything still works. Except my throat. I'm pretty lost and losing hope.