My Story...please Give Advice

[lnc]

Four years ago, I had a positive tilt table test while hospitalized for a week for fainting/tachycardia. During the test, I fainted and my heart beat stopped for about 20 seconds. I was placed on a beta blocker at the time. I have switched around bc I don't like being tired and tend to gain weight on the beta blocker. I also continue to have a lot of extra beats and flutters which showed up a lot on a holter monitor done by an electrophysiologist. I'm ready to get back to the cardiologist (who did the tilt table in the hospital - was really nice) or the electrophysiologist (who was extremely alarmed at my family history, somewhat condescending that I must be a stress case, and recommended I go to a teaching hospital which I can't do right now).

I was diagnosed with myasthenia gravis at 20 -I am 37 now. I took mestinon for 10 years. I had a thymectomy at 23. I also was diagnosed with anti cardiolin antibody miscarriages and took prednisone for 1 baby and ivig for my other two. My oldest son has a mitochondrial disorder that has been severely progressive. He is 11, profoundly mentally and physically disabled and very medically fragile. So, I have a history of mitochondrial disorders and autoimmune disorders - both of which I have read implicated in pots. My youngest also was recently diagnosed with type 1 diabetes (autoimmune). So, to complicate matters, 4 years ago I had an emg for myasthenia at a teaching hospital - I wanted to clarify if my muscle weakness truly was myasthenia since my son's geneticists were concerned I had a mito disorder. I had a borderline emg. I went of the mestinon. That is when my fainting started up and I got the tachycardia -- resting heart rate continually in the 100's.

Now, I'm reading people actually taking mestinon for dysautonomia! I want to go back on it. My medical history now is so convoluted I don't know where to turn. Should I go to the cardiologist who is helpful, or to the electrophysiologist who was not so great? I can't really afford to go to a teaching hospital for a big work up - my oldest son's medical expenses are astronomical and we're saving for an insulin pump asap. Thanks for reading and any advice!!

[Dizzy Dame]

It sounds like you've had quite a journey! I'm glad you've found this forum, although I'm sorry you have to be here.

I'd try to see a cardiologist who's willing to work with your neurologist. I've had the best luck with electrophysiologists rather than regular cardiologists. What doctors are you seeing now?

You might also want to try to get to Mayo, Cleveland or Vanderbilt to have a thorough workup. Vanderbilt will try you on different meds while you're in the hospital if you want to participate in their med trials. I've been to vandy, and I had a great experience. Also, the med trials at vanderbilt are free if you can get there.

I'm sorry that your children are sick. It must be very difficult dealing with your own health issues while having to worry about your little ones.

I hope you find lots of support and comfort here!

Hugs,

Lauren

[dianaD]

Boy, that's a tough call. I would go to whomever I felt would give me the mestinon (probably the nicest one), or to whomever you think is most comfortable treating you.

I'm so sorry about your troubles and the problems you face with your kids. You must be a strong woman -- taking care of 2 healthy kids has me at the end of my rope sometimes.

Keep us posted how you're doing!!

[Be Still]

Inc, my heart goes out to you. I'm so sorry to hear of the load on your plate, that's unrelenting and unchosen. If it's any help, I hear how difficult every hour of every day must be and validate that it's overwhelming. Having a chronically ill mom is stressful in any family, combining that with sick children is a great challenge, especially financially. Getting through one day of this is enough to be commended, months and years are awesome.

No matter how you feel about your mothering, you are doing great and no one else in the whole world could be doing as well as you with this burden. If your marriage is surviving, you two are heroes. Love each other and cherish each other. No one else knows the difficulty like you do. (This part is for free! )

There are two opinions about big work-ups, and for you, with your circumstances, you may want to content yourself with getting by with whatever reasonably works. A thorough work-up (learning details) often does not change treatment strategies. You do have many systems involved in your sx, it would be ideal to find a place where all could be addressed in harmony, but that may be idealistic.

I would rather work with a less-than-ideal-specialty doctor who was sympathetic than work with a dead-on-specialty doctor who was less amiable. A doctor needs to be there for you with Dysautonomia, to be able to be reached and to make decisions quickly. It may be that Mestinon will quiet things down for you again, and give you a little break.

Remember, you're doing a good job. Life is asking a lot out of you, you must be a very special person.

[Ernie]

Hi,

I would go to the doc that gives me Mestinon, whether it is a PCP, neurologist or cardiologist.

[bttrflyamby1981]

Just wanted to welcome you and wish you luck.

I would personally go with someone who has a good bedside manner, then again I still don't have a set dx so maybe that might not be the best choice.

Good luck and I hope you find the strength you need.

Amber