Still Don’t Know If I Have Charcot Marie Tooth

Hey Liz ~ I don’t have an answer for you [I]but[/I] take a deep breath. Many times what we fear doesn’t come to pass and we’ve used our energy fretting rather than enjoying. If you should get a less-than desirable answer then the energy you have “saved” will be available to take the next step. I don’t mean to “preach” as I need that reminder many times myself 😀 Oh, and remember, there are some days when “we” (GBS/CIPD) could “fit the pattern” of other diagnosis just because of the nature of these diseases.

Take a deep breath again 🙂 hugs, Judi

Hi Liz – take it one day at a time, girl! I, too, was guilty of chronic worrying – until I was diagnosed with CIDP. I learned that anticipating the worst scenario (hoping to be pleasantly surprised when it didn’t transpire) made my stomach and head hurt. That meant I had to take Tagamet and Tylenol – I hate pills, so I decided I needed to have some comic relief. I make it a point to watch America’s Funniest Videos every night (I get it on Directv on WGN) because there is always SOMETHING that makes me laugh! Don’t get me wrong – I still have days that I am so down I’d need a ladder to get up. But this forum has also helped me. So, remember that we are here to send hugs, smiles, whatever it takes because you ARE us! Good luck and good health!

Liz,

I’m so sorry you have to wait so long for your test results. Waiting can be agony. Try not to worry in the meantime (easy for me to say;).

I used to worry so much about everything too. Somehow, I’ve finally been able to adopt the idea of expecting the best, but being prepared for the worst. It keeps me from ruining today, by worrying about what MIGHT happen tomorrow.

Try to distract yourself, if possible. Is there any activity that you can do that keeps your mind totally occupied? Skiing used to do it for me, and although I can’t do that anymore, I have found that being outside doing anything in nature keeps my mind absorbed, so no worries intrude. Reading is another activity that completely distracts me. Things like that help the time seem to go faster when you are waiting for something too.

I hope you can find something that will accomplish this for you too. Meanwhile, I’ll be thinking of you, and hoping for the best.

Suzanne

Hi, Liz.

I know what you mean about having to wait. My mother and sister both have heart problems so several months ago I mentioned it to my GP. As a precaution, she sent me to a cardiologist who decided to do a CT scan (I can’t walk fast enough for a stress test!). Two months later, on 17th January I went for my normal six-month meeting with my neuro, when I heard my name called. It was the head of cardiology at the hospital–he and a pulmonologist had been trying to reach me on my mobile phone but, being in a hospital, of course I had the thing turned off. The cardio had just received my scan results. He assured me that my heart was perfectly fine, all my veins and arteries were clear, no problems at all, he wished all his patients were that good, etc. However, the scan showed a number of enlarged lymph nodes in my chest and lungs.

By the next day I was with the pulmonologist who gave me a thorough exam and said it could be one of several things, primarily TB, sarcoidosis or lymphoma. So we started tests: blood, x-ray, another CT (which caused an allergic reaction). I have a SPECT scan next week, and a biopsy thereafter, and we should know something by then.

The pulmonologist is pretty confident that it’s sarcoidosis, which is another autoimmune disorder and isn’t normally fatal, but there’s that slight possibility it’s something else…

Most of the time I’m not concerned, but every now and then thoughts come creeping into my mind. My favourite is that, if it’s lymphoma and they do radiotherapy, all my hair will fall out and probably grow back some odd shade of off-white.

I think the hardest thing in dealing with health is waiting. With this chest thing, the pulmonologist is listing it as possible cancer so that the tests will be done quickly. But when it’s not thought to be life-threatening (e.g., CIDP, CMT) the tests take forever–it took eighteen months before I got the CIDP diagnosis.

At any rate, hang in there, Liz. Judi and Suzanne are right: when thoughts come, take a deep breath and find a diversion. And know that you have friends who are praying for you.

Deb

Hi Liz,
I learned along time that worrying can give wear you out and doesn’t change anything. Now having said that I still have a hard time “waiting” for things to happen or results to come in. I’ve found that trying to concentrate on today helps. I also found that prayer can be a great help.

Hang in there

Jim C