MVP causing problems?

[Golden Girl]

I hope that someone can offer me some advice - I feel like I'm running out of options. Here is my history:

Diagnosed 1989 with MVP
1990 experienced severe fatigue for the 1st time.

That fatigue only lasted a short period of time and then would come and go until about 1998. I have experienced extreme fatigue for about 5 years now.

I have had my thyroid checked numerous times, B12 deficiency checked, anemia, menopause, hormone levels and others that I don't even remember. My Doctor finally sent me to Rheumetologist and one of the tests revealed an elevated CPK enzyme. I had an EMG done but everthing was normal.

I have pain in both shoulder blades, goes through to my chest, sharp pains that run across my chest, pain in my left arm, pain that runs down my left side. I have had shortness of breath, and a different type of palpatation than I usually have.

I am a healthy person in all other aspects, normal blood pressure, normal cholesterol, normal weight, and very rarely get sick. It's just this fatigue that I am having a hard time dealing with. There are so many things I want to do but just can't because of the fatigue.

I went to the Rheumetologist in November, had to wait six weeks to have the EMG and now have to wait 4 more weeks to go back to the Rheumetologist. I'm running out of options-it seems like whenever I would go to my regular Doctor I would have to tell him what I want done. I just want my life back.

Any advice?

[dea4]

Hi,
You say you've had your thyroid checked, but what did they check? If they just did a regular thyroid panel you can have normal results and still have a thyroid problem. If you have never been checked for thyroid antibodies I would request that, as well as FT3 and FT4. Do you have any other symptoms that may be thryoid related? cold or heat intolerance, muscle aches, dizziness, brain fog, forgetfulness, weakness etc.

[Golden Girl]

When I had my thryroid checked in August, my TSH, T4, T3 and Free T4 was checked. The Rheumetologist checked my thyroid in November but I did not ask what specific things he checked. He was very familiar with thyroid disease because he said his wife exhibited the same symptoms I had and he discovered she had a thyroid problem. I will call and see if the anitbodies were checked. I do stay cold most of the time, muscle aches I have (my CPK enzymes came back elevated) and I do have weakness. It is so irritating to want to do things but cannot because of the fatigue and of course like many people that post on the board-the Doctors just brush you off.

[dea4]

With those symptoms there is a good chance you have a thyroid problem. Chances are they did not check for antibodies, many many people have tons of symptoms and their thyroid results are "normal" and after a lot of suffering they finally get the antobodies checked and find they have thyroid antibodies.
I too had normal results with a lot of symptoms, my reg doc saw nothing wrong, sent me to an endo for a blood sugar problem and she immediately sent me for more testing on my thyroid and found I had antibodies.

Have you ever had your blood sugar checked? Thats another thing that can cause those same type symptoms and low blood sugar is common with MVP from what I have found out.

Right now I am waiting for test results on my heart, wore a monitor for 24 hours and had an Echo done, not sure what I have but I have been getting skipped beats with a strange feeling in my throat, my brother has MVP so we suspect thats what I have.

Hope you can get some answers, the fatigue is not fun, been there done that, too many times, still get times when I feel like I just need to sit and have no energy.

Take care

[Golden Girl]

DEA-
Thank you for your response - I'm sorry I haven't responded sooner.

I was not able to reach my Doctor last week but will try again on Monday. If the antibodies test was not done, I will request that one be done. I have read some about the antibodies and found that it comes in waves, which could explain why there are some days I cannot get off the couch and other days I'm fine. I am so tired of the fatigue I'm tired of the years it has taken away from me. What type of medication do you take for your thyroid and how long did it take for you to start feeling better?

Have you heard from your test results? I hope everything is fine.

Take Care.