Re: pulmo's, neuro's and triglycerides (oh my)

[Guest guest]

Lenore,

Thank you for giving us an update and thank you so much for your positive

attitude and perseverance to find an answer! I found your email personally

encouraging, especially after having a similar experience with a pulmonary

specialist at the MDA site last week. I got the same, 'at least it's not MS or

ALS' comment. When I just stared at him in disbelief, he said, 'well, it's not

like I'm calling 9-1-1 right this minute, am I?' This, along with the fact that

I had to start off the conversation by spelling Charcot-Marie-Tooth to the

doctor was not very comforting. So...I'm taking a medical journey break for the

holidays. I'll regroup after the holidays to decide how to continue.

My doctor did recommend that I also have the Sniff Test. As he explained it,

this test will determine if one or both sides of the diaphragm are paralyzed.

The result is either 'yes' or 'no'. There is no in-between. It will only show

complete paralysis. In other words, if you've lost 50% strength, the test will

not show that. Also, if you've already had it in Cleveland and the result was a

'yes' your diaphragm is paralyzed, then don't think there would be any reason to

repeat it. A copy of that previous report should be sufficient, unless I

misunderstood something the doc said.

As for the muscle biopsy, I completely understand. One of my doctors was

requesting the EMG/Nerve Conduction study of the diaphgram, which is also

invasive. During my 3 hour doctor visit last week, I pressed for an answer as

to why the test was necessary, asking exactly how it was going to change my

treatment plan. I could not get a definite answer. The only answer was 'more

data is better'. Yes, but why??? Will it change the treatment plan? It's a

great question that another member on this site kindly asked me to consider.

Since I'll been unable to get a definite answer, I've postponed the test. You

may want to ask the same question, especially if the tests you've had already

prove the issue.

Triglycerides. It's my understanding that statins work on total cholesterol,

not triglyc. Niacin works on triglyc. I'm not aware of any special risks to

CMT patients with it. (Others may know something.) I take 200 mg/day and it

brought my triglyc into normal range. If your total cholesterol is fine, you

may be able to just take this. It's something to ask your doctor about anyway.

The niacin comes in extended release too, for larger doses and to reduce chance

of getting flushed feeling after taking it. Also, regarding triglyc, I

understand that eating something like a piece of red meat or a piece of cake in

the 2-3 days before the test can impact the results. If these tests results

were abnormal for you, it might be worth repeating the test to be sure there's a

problem. If you know there's a problem, you have another thing to add to your

priority list. Gotta make sure your heart is ok. You are female and you are

young, so you are more likely to be dismissed by doctors as not being seriously

at risk right now. You have to prove it's not true with testing and proper

guidance from a qualified doctor. The good news is that heart disease is

something that doctors do know more about than CMT. Perhaps you can get in to

see a good cardiologist in your area. (Justification = high trigl, difficulty

breathing, and strong family history.)

Please continue to take charge of your health and push for answers in this area

as well as the others. You are doing a great job! One step at a time. I know

it's especially hard this time of year, so if any family/friends offer to help,

say 'yes'!