Bulbar ALS?

[Lianac89]

Hi I am a 28 year old RN in Las Vegas. Unfortunately medicine here is not very advanced and we do not have very many specialist. I have been seeing a neurologist for over a month for only 3 blood test for myasthenia gravis and an RNS to be done. My symptoms are seeming to worsen.

I’m guessing this all started August 2015 immediately after giving birth I noticed difficulty swallowing. It almost felt like my throat was going numb. This wasn’t an everyday occurrence so I brushed it off as stupid things. For a while I thought I was having allergic reactions because t would happen when I would eat.

Well September this year I started getting muscle weakness, was sent down to ER one shift and a stroke was ruled out. Imaging was all negative. Then late October again after my work shift weakness. I decided to go see a dr this time and got a referral to a neurologist.

Currently my neck and chest muscles are weak. My swallow is difficult, some days it’s hard to swallow saliva. I have lost about 15lbs this month from this. Seems like my swallow gets worse as I continue to eat. About 2 weeks ago I started getting right arm weakness. Sometimes it feels like my arm is so heavy like right under my underarm. And sometimes my right hand just feels weak. My muscles throughout that arm hurt. Also I have started gettin muscle twitches. I get them pretty much everywhere but a lot in the right arm. They don’t last very long.

My neurologist is finally gonna do an EMG this week and is referring me to USC for a neuromuscular specialist. Mayo wasn’t covered by insurance. Also I developed pots so thy want me to see an autonomic dysfunction specialist. My biggest complaint is my chest and neck weakness. I lay down majority of the day to help the symptoms. My head gets hard to keep up after sitting up too long. I wake up in the middle of the night gasping for air, feeling like my muscle isn’t moving. My oxygen saturation is always high 90s. I could not complete a pulmonary function test due to weakness. My neurologist seems so not understand my concerns and there’s not sense of urgency.

I’m on medical leave from work, now unpaid. My husband, son, and I are staying at my parents house so I am never alone and that my son is taken care of. We are about to sell out house anticipating that medical bills will be high. I pray this isn’t ALS but what else could this be? It seems to be getting worse. The appts at USC are booked until March. I honestly feel like I won’t make it that long.

I’m scared. I have a 2 year old who still needs me. My MG tests so far have come back negative, I have one more panel to be drawn on Monday and the kit took 3 weeks to get. I am currently takin fludrocortisone for the POTS and they were trialing me on mestinon 60mg BID. Not sure if the mestinon is helping because these seem like bulbar symptoms. Any one have similar stories? Experienced? Advice? Anything is appreciated. I’m scared out of my minD

 

[codyclan]

These do not sound like ALS symptoms at all—not bulbar or anything else. You say you feel weak but has your doc noted clinical There is a difference. Certainly sounds like you have something going on but it doesn’t sound like ALS. Wait and wee what the doc and your EMG show but I see no reason to be panicked about ALS.
Tracy

 

[Lianac89]

My last appt I got switched neurologist after complaining about the first one. The first one just mainly did eye tracking tests but I didn’t have any ocular symptoms. This new one noticed right arm is weaker than left, slightly. Then he noticed when I shut my eyes, the muscle twitches all around. These were tests that weren’t really performed by the last neurologist so I don’t know if it’s new. I have been taking mestinon as a trial, not sure if it makes a difference and MD said with the symptoms I have it would be hard to tell. But I now have muscle twitches. I don’t know if this could be from the mestinon.

 

[lgelb]

POTS could underlie your weakness and breathlessness (as could the POTS etiology, if any). There are different subtypes and the heavy-duty drugs you are on are not necessarily the answer (and can reduce your potassium, etc., which in turn can cause/worsen twitching).

I don't know what subtype you have, but I would see the specialist they are referring you to, and ask about a possible empiric trial of a beta blocker depending on what your labs show.

The good news: you're in the wrong place here, and probably have something very treatable.

Best,
Laurie

 

[Lianac89]

Thank you Laurie for your response. I am currently waiting to go to USC to see a specialist for POTS. I had an EMG this past Wednesday and it was completely clean. I’m hoping they can figure this out soon. I stopped taking the mestinon but am continuining fludrocortisone for POTS. They still want me to see a neuromuscular specialist as well. I’m hoping for the best and hoping I can return to work soon. Thank you for responding