Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 07-07-2017, 04:32 PM #11
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Heart

Have you seen a rheumatologist? There's RA arthritis, and then there's lupus arthritis. If you haven't been evaluated, that might be a good thing to do.

I'm so sorry you have so many things going on with your body! I can relate.

As long as the heart issues are controlled, you can live a good life! Don't give up hope of that. Has anyone talked to you about how nutrition plays a role in eye issues? I hope that the cardiologist fully evaluated you first, such as doing an echocardiogram.

Have you tried taking acetaminophen for pain?

I wish I could help you more.

Annie

Last edited by AnnieB3; 07-07-2017 at 06:00 PM.
AnnieB3 is offline   Reply With QuoteReply With Quote

advertisement
Old 07-08-2017, 09:55 AM #12
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
Default

yes, seen two rheumatologists ("rheumies"). First one already had bloodwork results, which were barely positive for RA, she barely asked me anything, barely touched me, then said, "well, I see no sign of rheumatological disease" and sent me away. My volunteer ride on the way home said she'd told a friend of his the same thing, even tho subsequent doctors decided to treat the friend and got good results, AND then she told him the same thing when he was sent to her by his back doctor, but when his doc sent him back a month later, he argued and fought over it with her, and she relented and started treating him and he's doing better.
Second one (same office, there's only one, locally) didn't have new bloodwork, spent a long time asking questions, tho the same ones over and over (my husband was there, he can verify) examined thoroughly, said she didn't think it was RA but she would order a bunch of blood tests, see what came up, and we'd talk again. Had the bloodwork done. Never heard from her. Saw my GP in the meantime, who told me it was all normal (big surprise), and she would probably call soon. Never heard from her.

Reading up on my own, came across some other stuff that might fit, like spondyloarthropathies, and saw they are treated with anti-inflammatories, like starting with NSAIDS. So, I decided to try the ibuprofen, since I know I tolerate that (and not much else, nothing stronger, that's for sure). And I messaged all my doctors that that is what I was doing, so if there was any medical reason I shouldn't, let me know. GP had nurse call to warn of stomach problems. Cardiologist messaged that okay for now, but not happy about long term. Nothing from rheumy for two weeks.

THEN she calls me at 7:28pm on night, to talk about my message. Starts asking me all kinds of questions about what's going on (most of which were the same ones she asked me 4-5 times when I saw her a month before. Asks if I have X or Y (ummm...you'd be the one to diagnose those, wouldn't you???) and who is in charge of my x-rays (no one. I am in charge of me. Everyone else treats me like a pingpong ball-send me away to someone else as fast as they can.) Tells me SHE would be happy to order X-rays.

THEN she tells me that, however, this is her last day. I ask, "Forever?" She says, "Yes". YES???!!!!! You ignore me for a month, and call two minutes before walking out the door of that office FOREVER and want to start investigating and treating me?? Only, of course, by the time I can go for the xrays, even if first thing tomorrow morning, you'll be long gone and no one will look at them....

So, I got a bit rude about it, and "we" (hah!) "agreed" (hah!!) that I will contact the person who will be starting new sometime in July. Because, after all, they will have plenty of time in their schedule to see me soon, instead of months from now.

Yeah, right. So eager to book an appointment and waste more of my life.
New person, but same office, same system.

The ibuprofen isn't about pain, it's about the stiff, swollen joints that take an hour to get working every morning, and every time I sit back down for more than 5 minutes. Tylenol doesn't do that.
winic1 is offline   Reply With QuoteReply With Quote
Reply

Tags
diagnosis, doctors, negative, waiting, wondering

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Good Doctor Bad Doctor!! AZjanie The Stumble Inn 11 03-18-2008 07:31 PM
Doctor Fred is now MY DOCTOR!!!! MelodyL Peripheral Neuropathy 3 03-01-2007 01:29 PM


All times are GMT -5. The time now is 12:30 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.