Unexpected medical adventure

[ksinger]

Alas, testing for EBV would only be for research purposes at this point. But I think testing for suspected infectious catalysts could become part of a database of information that could help at some point.

That EKG sounds awful. I've never had one that hurt, but then I've never had one that went for hours either. I wore leads once, but that was a feel your heart flutter and hit a button to record while it was happening type thing. Yours sounds different. Was this the Holter monitor?

Hey, just to let you know TP, if you'd like to take any of this offline we can do that. Perhaps the board is overloaded and has had a large enough lesson in MS now (it's just another service we offer! ha!).
Missy should still have my email. She seems to be something of a go-between for many. If you need any pointers to good sources, blogs, etc, I can steer you pretty well. I know people.

 

[TooPatient]

Alas, testing for EBV would only be for research purposes at this point. But I think testing for suspected infectious catalysts could become part of a database of information that could help at some point.

That EKG sounds awful. I've never had one that hurt, but then I've never had one that went for hours either. I wore leads once, but that was a feel your heart flutter and hit a button to record while it was happening type thing. Yours sounds different. Was this the Holter monitor?

Hey, just to let you know TP, if you'd like to take any of this offline we can do that. Perhaps the board is overloaded and has had a large enough lesson in MS now (it's just another service we offer! ha!).
Missy should still have my email. She seems to be something of a go-between for many. If you need any pointers to good sources, blogs, etc, I can steer you pretty well. I know people.

This was just the basic Holter monitor. It shouldn't have hurt. Even the EKG in office hurt. The nurse had to move one of the pads as the nerve it was on caused pain when the pad touched it. Then needle poke feelings under several as she ran the test. I'm assuming this is part of the crazy MS thing.

Any testing (within reason) I can let them do to learn more about the disease and maybe one day prevent or cure is good with me. I checked the box on the form as interested to hear about the research they are doing in the clinic.

I'll try to temremem to message Missy tomorrow. Any pointers and advise is most welcome!


Mammogram (3D) on Monday. Tuesday is cardiologist. Then two MRIs Friday.
The rest of the blood work came back normal. No mimic. Just MS.

 

[Arcadian]

I flat out told one person that going for a run would literally kill me. Seeing a cardiologist next week. Hooked up on a heart monitor now. Yeah, great. Running "cured" you but it is NOT the right thing for me.

One guy actually said that I should get a massage because you know women can't handle stress or working so imagine they are sick.... (To my credit, I did not hit him!)

I'm enough of a nasty bitch I would have busted him in the mouth.

My sister is also going through a lot of unsolicited advice with her disease.... the shit people will say:roll

 

[TooPatient]

I saw the cardiologist this week. I will never be going to that one again. He suggested that my only problem is that I am overweight (he hadn't looked at any of the tests I had done or listened to symptoms). He didn't seem to hear me at all as I was telling him what was going on. The appointment ended with him half laughing saying again that I just need to lose weight. Cut my salt intake and we'll check to see if I'm diabetic... Because overweight people eat too much salt and are often diabetic. (I had all of this blood work done (again) three weeks ago and he didn't bother to look.)

I did the blood work he ordered. Guess what? I am 1 point asaa from being too LOW on sodium. Also no hint of diabetes.

He also prescribed a diuretic to see if it helps my swelling. Great, except he didn't listen when I asked if it is safe to take since my blood pressure has been sitting at 110/60. Seems like a bad idea to cause it to drop!

Bringing this up with my MS guy on Monday to see what he thinks is safe and maybe get a referral to a different cardiologist.

Mammogram and two MRIs today.

 

[lyra]

I can't believe how poorly you get treated when you have to pay so much for your healthcare! It really upsets me. You deserve better.

Wishing you luck on your further tests. I hope your other specialists are better.