Tx during flare ups
 

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

Self treatment with Prednisone is more than a tad dangerous. From what I've head in here its not that fast acting...often weeks before any results even at high doses.

I don't think I'd try that outside of medical supervision.

Hi Eeyore,
I would recommend getting in touch with your neuro and say your symptoms are worsening/interfering with your everyday life. Be careful with Pred - I wouldn't recommend self medicating with it - I was hospitalised for 4 days when they first put me on it becuase it can cause major weakness before it improves MG. I was lucky and didn't experience the weakness side effect (although now I have Cushings as a result of my steriod use - I'm weaning off them now but the side effects aren't fading and man is my self-esteem taking a beating).

Anyways, be careful - and keep positive! I couldn't even get in and out of the bath a few months ago and now I'm walking long distances on my own. I've even started leaving my cane at home - Yippee!

All the best
~Kathy

Thanks for the input--I'd hold off on the self medicating.

I'm 40 years olds with 3 kids and I have a career at NIH/NCI in cancer research---up until ~1mo ago I was at least stable (I had to thicken liquids) and working full-time without a problem. For the last month I can't eat (I lost 25lbs---no that that is a bad thing), can sit up for ~1hour at a time and can barely keep up with the minimal work requirements from home---and my neurologist doesn't want to try to do something.

Here I sit, with a stupid tube feeding, problems breathing and no plans for improvement short of spontaneous recovery (well at least that happens with MG).

Speech therapy didn't want to work with my swallowing until it got a little better (I have another appoint scheduled on Mon).

Sorry for the rant...I'm just really frustrated and ******-off...and to think I work in the medical profession...my colleagues keep asking me what I'm doing to get better and basically I'm not doing anything:Sigh:

You need a new neuro. You are teetering on the edge of crisis and your doctor is clearly clueless or heartless. Go to ER if need be (at a hospital where your "neuro" has no affiliation) and hopefully you will get some decent care. What you are currently receiving is despicably inadequate.

Good luck.

No problems with that. Everyone needs to unload their frustrations, and from what I'm reading here this MG issue seems to be very frustrating. So many options for treatment, some not to neat, but better than the problem...just trying to find someone to DO SOMETHING seems to be an issue for many in here.

There's more than one Doctor in the book. Contact some or the various MG organizations and see if they can direct you to a MG savvy neuro in or close to your area.

Good luck..keep positive

My swallowing gets worse when my BP is low... I am not sure if that is due to all my other health issues but have you noted any correllation with your swallowing and other issues? I have to take steps to raise my BP in order to get out of the choking fits.

I third (or fourth?) the pred caution... long acting steroids can cause weakness on their own so while the docs think they help the immune system, take it from someone who had Cushing's and is destroyed by steroids, they are nothing to mess around with... after all, those with Cushing's have a repressed immune system and get sick all the time with everything and anything.

Hi,
I am sorry you are feeling lousy. I worked in health care too. I feel the same way as you. Please don't start steroids yourself. I thought I was going to meet my maker from them. Also had pheresis. The Mestinon keet me above the earth.
I noted that you work at NIH. There was a doc from Columbia who went there. If you want to check about her, she was very big in M.G. Her name is Dr. Audrey Penn, maybe you can check into her also. You need help, since it seems your present neuro seems useless. I hope you get help. The breathing issues and swallowing are a b***** and be careful.

Back in the hospital
 

...I am in the one my neuro is at--he is in the only group in town, and only 2 hospitals in town have neuro coverage

The current reasoning behind not doing anything yet is that he doesn't believe that a mildly abnormal SFEMG proves it is MG...I'm trying to get him and the Hopkins docs to talk. He just doesn't feel comfortable treating someone who aspirates with immunosuppressant without "proof", and in his experience the SFEMG is grossly positive (not just a few fibers) in someone with MG..he agrees that the Hopkins docs may be comfortable treating me (Richmond is a very conservative town)

So needless to say I'm still totally frustrated...I want desperately to be doing something that will get me better

Neuro and Pulm are pointing fingers again because my peak flow is low (asthma) and my VC is low--it is becoming a chicken and egg story

I will look up Dr. Audrey Penn--I was already evaluated by the neuroimmunology branch there--all they said is it is not MS, maybe MG, or something else

I;m trying to keep a positive attitude--my husband brought me my computer and a verizon wireless adapter:), so I'm a little better now

Sorry you are back in the hospital but it may be better for you with the breathing problems etc. VC and PF are not the indicators for resp. muscle weakness. PE, PI MAX, and MVV should be tested, also I cannot remember if you are on Mestinon but also pre and post Mestinon breathing test, MVV, PI, PE MAX can be tested.
Are you on any meds because that can alter the results of SFEMG and clinically weak muscles have to be tested.
I can send you the articles about this if you like.
I hope you get help, if not maybe they can transfer you to Hopkin's or get in touch with Dr. Penn.
Stay strong and I hope you get help soon.

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?



:)

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.