NeuroTalk Support Groups - Tx during flare ups

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- - Tx during flare ups (https://www.neurotalk.org/myasthenia-gravis/48870-tx-flare-ups.html)

Go to another town. My neuro is 110 miles away and we coordinate things with the help of my local internal medicine doctor.

Your current neuro is a nutjob. You really need a change.

I'm still trying to get in touch with Hopkins
They are also testing my NIF and PIF--both of which were low (12 and 12..at least they match) mt VC is 1.6l

I'll keep you posted

Have someone call this doc at Hopkin's or the Mda center there. Explain your situation, feeding tube, your muscle pressure reading, # of hosp., your appointment date and your present neuro's opinion of your SFEMG. Tell them or have someone in your family explain this mess, what they are not doing for you. I know you have not seen this doc yet but there has to be someone, who will take over your care.I am pretty sure as long as there is a doctor who is willing to accept you at the ER there, it will be a way for you to get transferred there. Keep hanging it there.

My neurologist here is going to call Hopkins and try to get me an earlier appoint. My pulmonologist says my lungs are clear, the muscles are weak and he is deferring to neuro. Neuro does not feel comfortable treating me. Later today they will have me walk and check my pulse ox to see if I need home O2

I send an email to the Hopkins neuro who did the SFEMG explaining my situation and asking if he could get my appoint moved up.

Now I wait...they will likely discharge me tomorrow

Hope things are ok with you. Hope you will be getting to JH soon.

I'm back at home

Hopkins doesn't have any appoint earlier..I know the inpatient service is resident run and it is July (when the new residents start)...I'm just going to wait for the 23rd in hopes of seeing someone who knows what they are doing

Get help now! Find a new doctor!

You sound like you are very sick and in need of medical attention NOW - TODAY! When I had a crisis, my doctor had me admitted to the ICU (couldn't breathe) and I was there for 9 days! While in the hospital I was given IV IG, blood and steroids - the difference was AMAZING! You really need to find a doctor who knows (and cares) about what's going on so you don't have to continue to suffer like this. I had surgery on April 22 to remove my thymus ans hope to be in remission soon, but am still on steroids and have been told that I probably will be for at least 1 year. Please,please take care of yourself and get treatment! Are you on Mestinon as well?

:)

Quote:

Originally Posted by eeyore2 (Post 311217)

What treatments do your docs recommend for "flare up's" that interfere with everyday life?

I now get short of breath walking very short distances and talking and my swallowing has gotten to the point where I had a feeding tube put in 3 wks ago and theoretically shouldn't taking anything by mouth.

I have been told to rest and take it easy, and after 1-2 weeks of that, am not much improved (although I can breath OK if I'm sitting propped up against something and not talking)

I have an appoint with a doc at Hopkins the end of July, but i really think that something should be done now. I called my neurologist office yesterday and told them the SFEMG at Hopkins was positive, but I've not heard back yet.

I'm getting tempted to do a trial of prednisone myself as I have a bunch around from various asthma issues.:Bang-Head: Even if I screw up, at least I'm trying something

I was in the step down unit this time (2 weeks ago it was the ICU). My pulmonologist wnts me to be sure to go to the ED if my breathing gets worse again, but for now it is sucky, but stable. Since neuro isn't going to treat and I'm not getting worse there is no reason to be in the hospital.

I have my appoint at Hopkins in a week, but I don't know what they are going to say to do...I'm on IVIG every 3 weeks and on 60-90mg Mestinon every 4 hours. If they want to put me on immuunosuppressants, I'll have to get the J-tube placed again---I currently have a G-tube and am eating some mushy stuff, but I'm refluxing and aspirating still a little

My case is not as clear cut b/c I had a cervical disc slip and have some neurological residual from the resultant cord compression...before they figure out I had the disk compressing the cord, they told me I had MS. I also have asthma which kicks in b/c I'm chronically (but intermittantly) aspirating. My SFEMG was mildly abnormal as was the modulating Abs (binding Abs were negative). I've just send off the antiMUSK Ab test.

The current arguemtn against MG is that I had a period a couple yearrs ago when my heart rate was irregular and my blood pressure was bouncing around...which suggests an autonomic nervous system problem (which can be seen in people with cervical cord injury, so I don't really understand why they find that odd). My breathing problems "could" be from my cervical cord issues, but then there would be no reason for it getting better and worse at times. My swallowing problems cannot be from the cervical cord stuff

So now I "probably" have MG, but the neuro doesn't feel comfortable treating me with immunosuppressants. This all has been going on in some form for 15 years (the breathing and swallowing part for 5 years), so you think I'd be used to it...or someone would figure it out.