Oct 11, 2009
It has been a long, long time since I've done a health update. A really long time.
I've come down with a cold that now seems to be turning into something else. I am keeping an eye on it so it doesn't get out of control.
Without a doubt this cold is causing my MS symptoms to act up. I am running into things, bad balance, and legs are feeling numb/tingling is worse. I know this will pass so I'm not jumping on the phone with the neuro about it. I see him next week anyway, so if things haven't improved then I'll tell him about it.
Breathing is really bad with this cold though. When I saw the MDA doctor last Wed, he ordered a breathing test. The tech from pulmonary came in and we did 4 attempts and my best FVC was 1.90. Normal for my age/size would be around 4.0. The low number is likely due to this bad cold, but it is only slightly lower than the extensive breathing tests done at NIH last June. We have got to get to the bottome of this breathing issue, but I fear that in the end there won't be much they can do to help since its probably a weak diaphram.
The copax injections are going ok. I am still getting big bruises, but that is normal for me I guess. I hadn't heard from a SS nurse in almost 2 months and then out of the blue one of them called me last week. I told her I thought I graduated and we both had a good laugh. That proves to me that they are real people on the other end of the phone and not automated calls. LOL! I am now 4 months into this DMD and am happy to report that I think it is helping, at least I sure hope it is helping.
I did have to resort to using my wheelchair for the first time when we went to the mall yesterday. There was no way with this bad breating and weakness in my legs that I'd be able to enjoy even 10 minutes in a mall without being pushed around. It was either use the wheelchair or stay home and I wanted to get out. It is hard explaining these things to my husband and son. I think DH needs to go with me to my neuro appt next week so the doctor can explain it AGAIN to him. Right now it is all about conserving my energy so I can do the things I HAVE to do so I have energy to do the things I WANT to do if that makes sense.
Other than that, I wait for the results of the MDA doctor's tests he ordered last week checking for lactic acidosis, Myethenia Gravis, Sojournes syndrome (I don't have that!!!), and something else I don't understand. He received my faxed records and wants another EMG (YUK!) and then we will talk after he has went through everything. So, again I play the waiting game but since I've been there done that before, I can be a patient patient.