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Old 09-04-2010, 06:55 PM #1
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Default Heart issues and mg?

Hi Everyone,

I have just been to my neuro again to update him on how IVIG went last week. I had three days of problems walking and the fourth and fifth day I had blood pressure spikes and drops and some tachycardia but not enough to give me any meds for it. My bp would drop a few minutes after it would go up. And here is the thing: one time when I got up to go to the bathroom I almost fell and must have looked horrible. A man called for help for me and they checked my bp which was high. Then they checked it again standing. .. expecting a big drop but it went WAY up and I had tachycardia: my neuro is not having any of it. He is sending me to a cardiologist now before I can have thymectomy surgery.

I have been having some dizziness in the mornings over the last month since stopping mestinon and my resting heart rate is all over the place, often over 90 and sometimes will jump to 110 when I stand up or just go up to that while I put on makeup.

Does anyone else have heart or bp issues and MG?

debra
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Old 09-05-2010, 12:12 AM #2
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Sorry, Debra, I didn't see your post right away. My back is killing me right now and I can't sit for long.

I can't remember, what drugs are you on? Always look to a drug as a culprit. It may or may not be your heart. Do you have much sodium in your diet? Sodium can raise the BP a lot! I hope they'll check your electrolytes too.

It may or may not be MG-related. My BP goes up a bit in between Mestinon doses.

You are off of Mestinon? Why? When MG is worse, it can raise both BP and pulse. Do you know what your O2 saturation is?

This may not be an issue but some people do have problems with IVIG. A person I knew had it "reveal" antiphospholipid antibody syndrome," which is common in people with autoimmune diseases.

I hope you will keep a journal of symptoms. And I hope you'll be ok. I know how scary it is to have a high BP and tachycardia. Let us know how things go!


Annie
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Old 09-05-2010, 09:07 AM #3
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As far as meds, I am down to 20mg prednisone and dropping by 5 every 2 weeks, trying to get off it entirely for the thymectomy and then IVIG every 21 days. IVIG was 5 days long and now it is going to be for 3 days and reassess. I am doing that well as far as MG symptoms go. Strength is great and stamina is the best it's been in 7 months or more.

They have recently done a panel on me due to one random dark urine with IVIG that never repeated but everything was totally normal. My O2 saturation has always been very good: at 99 or 100% when they check it.

I am off mestinon because it does not "cure" MG--it manages symptoms and the doc says he has to be able to assess my true strength for surgery. I can use it if I need it but I actually have not needed it with all the IVIG making me very strong.

There is very little sodium in my diet except for when I go out to eat so that is something to watch.

When I was in crisis the 1st time in May, I did have PVC's in the hospital but they said it was due to my potassium being low as I was on a diuretic for hearing loss that was discontinued. Also, my rate would go up in the 130's during eating and moving around. I was very bad off. In June, they said everything looked normal during the hospital stay and they started IVIG and my heart was not as high or wild so I get what you mean about things being better when you are feeling better with our MG but this isn't resolving and my MG issues are totally managed at the present time. . .

That is interesting about the revealed medical issue. IVIG is saving my life but I am certainly having increased heart issues with it and that cannot be denied. Cutting back to the 3 days should help though since it all started after the 4th bag last time.

I read something that since the heart is not a voluntary muscle, it cannot be affected in MG. Does that make sense at all to you? You said when MG is worse, bp and pulse can be a problem. . .

debra
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Old 09-05-2010, 10:58 AM #4
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I never a had BP problem before MG. My initial IGIV infusions were interupted because my BP was out of control. I was referred to a nephrologist that presrcibed different meds for me before he came up with a combination that worked.

I now take 3 meds for BP that my neuro approved and have not had a problem since. That was 18 months ago. I am 67 years old.

Tony
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Old 09-05-2010, 02:23 PM #5
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Any form of deconditioning of muscles can lead to higher blood pressure, which includes MG. The heart is not the only thing which can effect high blood pressure.

There is "essential" and "secondary" hypertension. It is very important that a cause for the high BP be thoroughly investigated before a blood pressure drug is thrown at you. Many times the cause can be improved or eliminated (such as a drug). And going off of a hypertension drug can actually cause a spike in BP, greater than it was before the drug.

http://www.aafp.org/afp/2003/0101/p67.html
http://enotes.tripod.com/hypertension2.htm
http://www.nejm.org/doi/pdf/10.1056/NEJM198004033021402

Higher BP should ALWAYS be investigated. My Dad had high BP, which was not diagnosed by his doctors, due to aortic insufficiency (due to rheumatic fever) and this caused his kidneys to fail.

Renal artery stenosis is one of the main causes of secondary hypertension. This can be determined by a duplex ultrasound (easy test, I've had it done).

I hope they can figure this out, Debra.
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Old 09-06-2010, 03:23 AM #6
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Quote:
my resting heart rate is all over the place, often over 90 and sometimes will jump to 110 when I stand up or just go up to that while I put on makeup.

Does anyone else have heart or bp issues and MG?
I have a heart murmor. I guess I have MG/ 3 out 5 doctors say I do, and I have a thymoma. I take Mestinon, and my pulse is often 90+. It's especially bad, when I skip Mestinon.
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Old 09-06-2010, 08:40 AM #7
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Poetist: I read your other post and I have asymmetrical weakness too. I have found more than one citation about it and MG and my MG specialist didn't even blink an eye about it. Is there some reason you aren't you having your thymoma removed? I thought it was a better prognosis to get it out and yours is quite large. . .

Also, my neuro diagnosed me based on his assessment and my response to IVIG and then when they found the mass on my thymus that was the definitive objective test that sealed the deal. It sounds like you are diagnosed to me.

I know what you mean about mestinon. It definitely made my heart rate very mellow and lower and I did stop taking it at the end of July but I had issues before mestinon and I think we need to get to the root of the issue now. . .

Thanks for the info Annie : )
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Old 09-07-2010, 01:48 AM #8
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I have to get another round of MRIs in a couple of months. The doctor never officially said thymoma. He said it is tissue that 5.7 cm on my enlarged thymus; it was originally only described as a remnant. I assume tissue means tumor.

In the process of discovering I had tissue growing from a remnant, to 2.5, to 5.7 cm, my father was dying in the hospital.

The last MRI showed no growth.

Anyway, I am using this time to sign up for disability insurance, so if or when I have surgery I won't be hit financially.

I do appreciate all of the great advice on this website, and for my next doctor's visit, I will come armed with information. Personally, when the doctor changed his mind from surgery to no surgery, I was personally relieved. However, I really didn't know why he changed his mind other than the MRI showing no malignancy.

After I see everyone had surgery and their tissue was less than mine, it got me back to thinking. Am I getting the best care? I will request another neuromuscular specialist, if it is possible, because I do not think the doctor has enough experience in the disorder.
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Old 09-07-2010, 01:05 PM #9
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I have never heard of an MRI being able to determine if a mass was malignant or not. I thought only a pathologist could determine from a tissue sample (or a histologist in the case of blood).

Pls get your dr to explain how he has made his determination - - it may help you feel more comfortable about getting a new doc!

Sue
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Old 09-09-2010, 03:35 AM #10
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Sue, I was told the determination was made by viewing the MRI with contrast. I looked it up on the web, and doctors determine how the tissue appears under contrast.

Though, someone on this site was told their tissue was benign but after the biopsy, it was deemed malignant.

So, I'm not really confident, but I have read that most of the tissue on a thymus is benign. Once I obtain some insurance, I will schedule an appointment with the same doctor, because I need him to order the next round of MRIs.

After that, I will most likely request another specialist.
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