Hi all! I've been dealing with chest tightens, pressure, as well as pain. I actually thought I was having a heart attack, sometimes I still do. Also in my back deep aches I overall feel like I have been beat up and im internally bruised. I have been in and out if the hospital for these symptoms as well as seen a cardiologist, my neurologist, and a MG specialist at UCLA and have no answers. All heart tests are fine, blood work comes out fine so basically all I heard was "well might be inflammation from the prednisone." So am I supposed to just deal with this? I feel like im trapped at home any thing I do my heart races it even wakes me up at night while I sleep. The docs also tried to say it may be part anxiety but I know that feeling that and that's not the culprit. I have been diagnosed for 19 yrs. (At 16 yrs old )with MG. on prednisone, mestinon, imuran, Ivig treatments, and 2 thymectomys as well as recently being diagnosed with hypo thyroid ( hashimotos) was on medication for 2 months and blood work showed it was ok so im not on anything for it now. Can any of you help? Any suggestions? Thanks..

I hesitate to mention this at all, because the symptoms you mention sound dangerous, and I don't want you to say, "Oh, that's all it is" and put it out of your mind. It's just one possibility you could discuss with your endocrinologist. Here goes.

Hashimoto's, as you know, is an autoimmune thyroid disorder in which your immune system attacks your thyroid gland. As the gland dies, it's unable to produce enough thyroid hormone, so you're hypothyroid. However, sometimes as some of your thyroid cells die, they can suddenly release stored-up thyroid hormone. So some people, in the earlier stages of Hashimoto's, have surges of thyroid hormone so that they actually have hyPER flares, against a background of hyPO-thyroidism. A surge of thyroid hormone would make your heart race. I'm not sure about the pain, pressure and tightness, and I don't think it would explain the back aches.

This stage of Hashimoto's is known as "hashitoxicosis." It usually goes away on its own as the disease progresses. It might not show up on the lab work.

Again, this is just a possibility, but worth discussing with your endocrinologist. If you don't have an endo, get one!

I hope some people with Prednisone experience will chime in on this. It can make your heart race too, I think.

Abby

Thanks Abby for the advice. I do have an Endocreinologist and actually had a test done to check my adrenal glands because I discussed with him about my heart racing and the test came out fine. I will mention what you said too though and see what he says.

MzTracey,

It is a terrible experience to be laying in bed with your heart pounding, I do know how this feels.

I have had similar symptoms, but without any pain. I get a rapid heart beat, my chest feels tight, it feels like my heart is beating so hard it is going to pop or something. I talked to my neuro and he didn't think there was any trouble because my blood pressure is normal and I didn't experience this effect while at his office.

I was getting prepared to make appointments to see other doctors, then I figured out what is causing my trouble. For me it is the Mestinon, it makes my heart pound like crazy. Oddly, it didn't always do this for me. When I take Mestinon I also get nervous and shaky, as if I drank too much coffee.

After talking to my neuro, I cut my dosage to 1/8 of a pill, which is 7.5 mg, and that mostly solves the problem.

I did find some studies that show Mestinon can effect the heart although it appears to be a rare side effect (I say this from memory, I haven't recently looked at that information).

I am still wondering if I have another health issue, perhaps thyroid or adrenal related, but I don't know yet. I do think that could be part of mine and/or your trouble.

Maybe this symptoms is aggrivated by one of the drugs you are taking?

I hope you feel better soon.

Did they make sure you didn't have a blood clot (do a d dimer or ct angio of your chest?).. The IVIG causes both my heart rate to increase for several days (mine has also been increased for months since this whole thing began though).. but also the IVIG makes my chest tight for about 24 hours.. Hope you feel better soon!!

Hi There,
Sorry you are having so many problems. I too have had heart palpitations for a number of years, I take Atenolol for that and it works for me. I'm currently on Mestinon and IVIG. I just recently went off of Imuron and my digestive system is better, that caused shake as well. The tightness of the chest I have experienced after ivig treatments sometimes. I use my heating pad to relieve it as it is quite uncomfortable.

Hope this helps.

Blessings

Hello everyone. It has been a long time since I have posted on here. I saw these posts and wanted to respond. I too had most of the symptoms everyone is talking about....the rapid heart beat that feels as though it will come out of my chest, the tightening, and occasionally pain. It usually came about when I was not doing anything at all such as laying in bed. Every time i went to the doctor, nothing showed up on my EKG's and Ultrasounds. Finally one night the heart pounding started and would not stop (which it usually would after a minute or so). I went to the R and it turned out I was in A-Fib. It was discovered that I had Wolfe Parkinson White Syndrome which is pretty rare. Basically, there is en electrical current which goes through your heart down a single pathway. with WPW, there is more than one pathway which needs to be close, thus curing the problem(usually). now, i am not saying this is the case for everyone who has commented but what I find interesting is my military Neurologist said she had a case where a female soldier with MG had WPW as well. She was curious as to whether these could be connected but does not have enough evidence to prove it. Just a thought. You may want to bring it up to someone as it seems there are quite a few of us with the same issue! I hope all is well.

Ken

Thanks Ken! I will look into that. I plan to ser the cardiologist again hopefully this week. I also wanted to know if there is a special test you took to be diagnosed with WPW.

That's really interesting about a possible relationship between MG and WPW!! I have had palpitations since my son was born - and about 8 weeks later my heart began racing (that's when all this stuff started).. I should probably go see a cardiologist at some point here soon too!
Mztracey- I believe that WPW should show up on a regular EKG as long as a trained eye is reviewing it!!

Tracey, I've been in pain in the past week, so I haven't been able to sit and read much. Now that I can, I'm amazed by your post.

The lack of logical response by whichever physician said, "well might be inflammation from the Prednisone," floored me. Prednisone is taken to combat inflammation, like in arthritis or lupus. So that doesn't make sense!

Deep pains in the back could be from a number of different conditions, like pancreatitis, kidney disease, gall bladder disease, blocked ducts (via a stone), etc. SO many reasons. Did anyone check you for a kidney stone? Can you define your pain? Is it constant or intermittent? Is it sharp or dull? Is there a specific origin for it or is it in more than one place? You really need to define the type of pain first.

Pain can be caused by inflammation, infection, cancer, nerves . . . again, so many reasons. A good doctor will logically look at your situation, your recent medical situation and some basic tests.

Has anyone considered a blood clot? Have they done a D-Dimer? Have you been tested for any clotting disorders, which are common in conjunction with autoimmune diseases? What about renal hypertension? Yeah, you can get hypertension from renal artery stenosis.

What is your blood pressure? Do you have a cuff? Have you taken it while lying down and then after sitting/standing up after one minute? I'm curious about your hydration level. Dehydration can cause a high pulse too.

Occult infection can cause a high pulse. Do you have any signs of infection? Since you are immunosuppressed, the typical things like a white blood cell count may look perfectly normal. Did they check your erythrocyte sedimentation rate (ESR)? Do you have a fever, even low grade?

If you have a primary doctor who you trust, have a heart to heart with them about this. A high pulse, especially if it's not YOUR normal, is not normal!

When did the racing pulse begin? Is it nonstop? Did the pain begin at the same time or a different time?

Stopping a medication can bring on rebound effects. Did this start after stopping the thyroid meds?

Just because an endo has looked you over once doesn't mean that the body isn't always in flux and doesn't change! Maybe another appt. would be a good idea. Did they check your thyroid antibodies? Sorry, but I question EVERYTHING and don't assume anything when dealing with doctoring.

ER doctors don't like to "diagnose" anything but if your symptoms are severe, you have to go back in. How high is your pulse?

One more question. Has anyone done an echocardiogram to look at your heart? An ECG isn't enough.

Anyway, I hope you can get someone to figure this out. Please don't overdo anything physical until you can, ok? Take care.

Annie

Actually, I have one final question. Do you have ALL of your test results?