About seeing the new Neurologist

[kathylee]

Hi all,
I am still fried by all that has happened in the last day and a half. I am very proud of myself for where things are at this point but it was hard won at the expense of WAY too much stress. Thank HEAVEN I happened to have an appointment with my oh so gentle and caring therapist yesterday after the appointment. I got to CRY the cry I'd held back at he doctors office. The urge to cry started when they asked me to do a squat and I said I'll fall they (Dr Swenson-female and 2 residents=male) said they'd catch me. I fell to the floor no getting caught. Then had to do the crawling to a chair for support to get up thing, gowned as they said, " is that what you have to do? I'd pt a frowny face here if I knew how to.
I was stunned when she said she wanted to cut my meds way back to the initial dose of 60mg x 3 daily (mestinon). My response was string enough she backed down. Then she said because all my test so far have been negative she wants to do a single fiber emg with her present and to prepare want me to skip not one but three doses of my meds..and do this at home. The other doctors put me in the hospital for med changes. I pointed out twice how far away I am in event of a problem.
I cant go into all the details here but after phone call to MG support person and a phone call to my pulmologist to get involved and a call back to Dr Swenson to tell her I had no way to get there adn why not admit me we talked once and then again this morning where she finally said she had checked and yes I could be admitted for this and then my breathing could be monitored for problem and if I have trouble they will try plasmapheresis first but if needed will restart mestinon.
Gonna leave it at this for now. She obviously doesnt get how sick I am. I felt I was very clear. Not sure how much faith I have in her....

Kathylee

[kathylee]

Ok abit more...
Not sure what to do. I AM CLEAR THAT I AM FEELING BEAT UP ALREADY. At a certain point, maybe because of my abuse background I just cant take to be poked, prodded,  and hurt for any reason. If I postpone the test it is certain nothing could get me well enough to return to my job. At the same time I realize that going back to my job now may be the worst thing for me. That I could chose to have faith that a job will be there when I am better and will find a way not to lose may apartment because of this choice.

It pisses me off that I have to put myself at risk by stopping my meds, jump thru these hoops so she has a defining test result. I told here about the antistriated muscle test irish and another one called RyR antibody that has shown up in seronegative people. When I said on the last phone call that I was hoping for that (plasmapheresis) or IVIG now. Her response was that this was only for situations where step up was needed. I responded that I feel this is that situation...my job at risk as severely sick as I am now. No response from her. I guess I need time to digest all this. This woman is disregarding alot...as chemically sensitive as I am and I told her this in our last conversation do I trust her. See I feel if she doesnt at least try to discuss options...I am setting myself up for a very bad situation.

Kathylee
Thanks for being patient with my out loud processing here.

[irish]

Kathylee, I really feel bad that you have to go through so much to get treated. I have had similar issues with docs etc and I call it baptism by fire as everything that I had to do to get diagnosed took so much out of me. I was determined to have a diagnosis if and when I died.

I am very surprised at how little your doc seems to understand about Myasthenia. She almost acts like she hasn't dealt with many patients. Have you asked her what her experience is. My neurologist is so good about taking care of me and believes what I say when I tell her things. She is also very adamant about me taking Mestinon every day a couple doses even when I am not feeling so weak. She said I must have some on board at all times to have a jump start in case my weakness returned rapidly. She also wants me on the Prednisone 10 mgm every other day---indefinately as she says that MG patients need to have very proactive care to keep them from going down hill fast.

It took me a long time to get to this point. My wish is that you can find yourself a neuro who is more in tune with your condition. This whole thing you are going through sounds too stressful and makes me wonder if she truly knows what she is doing. I would bet that other docs would not even require an EMG as you have already proven that you have so many of the symptoms. I see no reason at this time for you to be pushed into all this stress. Talk with your therapist and see if she knows someone who will treat autoimmune disease more aggressively.

The standard treatment for MG is the Imuran but it takes several months to kick in but does seem to do well. The prednisone is given along with the Imuran to improve your condition while waiting for the Imuran to kick in. Your doc is right about using the IVIG in cases that are hard to treat. Many times the plasmaphoresis is done and this helps to cleanse the blood of the antibodies. The person is then put on the Imuran and prednisone to help halt the immune attack on the body.

There is always a shortage of the IVIG products and generally emergency or hard to treat diseases are treated first. The problem is that no one has even attempted to try to treat you. There are treatments out there for you and the docs should be getting you on them so that you don't deteriorate again.

Also, it would be good for you to contact your local county social services to see about getting help with rent etc while you are trying to get this medical thing under control. There is lots of help available and options for many issues if you pursue them. I would call and ask if there is any way that someone could come to your home and assess you and see what help you need that is available. Don't be embarrassed. That is what these services are there for.

If you talk to your neuro again and she wants you to decrease the mestinon it would be interesting to see what she would say if you told her that you would hold her responsible if you went into crisis. Seems sort of stupid to take away a drug that you know is helping you and then hospitalize you so that you are near a doc if you quit breathing. Sort of like jumping from the frying pan into the fire doncha think??

I would get proactive about finding another doc etc. Maybe your kids or someone from church etc could help you with this. I know that you are tired and then you have the stress of finances etc. I will keep you in my prayers. Irish

P.S. By the way, can you tell that I have an opinion regarding this situation? Hopefully I am not confusing the issues any. My biggest concern is that if you quit the mestinon, have no breathing issues and have a negative EMG----what have you gained??? Not a darn thing and you will still not have an MG diagnosis.

[salsen]

I'm with Irish  - let this doctor know she will be held accountable if her treatment makes you worse.  I can't believe all these people let you fall to the floor and watched you crawl to a chair to get up!!  They seriously need to be called on the carpet.  My neuro checks my balance on a regular basis and is quick to jump if I begin to tilt.  I sure would be looking for another doctor if one let me fall to the floor to see how I handled things.  I truly hope you get better treatment very soon.

[kathylee]

thanks I needed to hear all this...I agree. It was as if the crisis  wasnt on record.  Right now I also have a heck of a headache and pain in my neck and the base of my skull from the pushing the resident did on my forehead to check muscle strength. I am getting encourage ment to go elesewhere from the kansas city MG folks.

Kathylee

[kathylee]

Ok clarity is coming,
Cant fall asleep. Think I had too much of the new spaghetti sauce I tried...it sure was a treat tho. And yes I have aot on my mind.
First I need a day of enjoyment..time with my grandkids. they sure do put things in perspective. Then I am going to tell this new neuro that doing this proceedure as planned is too risky with my oldest daughter out of state. I realize as I think back she was talking down to me like at the end she said "now dont take the medicine like I told you." This along with other things that were said including specific need to hear about my trauma history including when I had panic tells me we ended up on the side of the doctors that Ive had there that treat me like mentally broken and incapable of an adult conversation.  They think they have to make decision for me so they dont discuss options. Obviously I can confront her with this and ask if she read my history and what she feel she sees there and honestly why she doesnt seem to see how sick I am.  I also have the right to ask her what her paln of treatment is is the test is positve or negative. If I go thru all that to still have her think I am dramatizing my symtoms so she doesnt help me then I could break.
I still have my Internist there and my pulmonologist who always want me to have the best doctor. There is an MG specialist here in my own town my family doctor said but he is semiretired...dont know if this is a lead. And of course there is Mayo Clinic three hours away with only one preganant daughter to help me get there I HATE to go that route.
Kathylee