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Health Update

Oct 11, 2009 - 3 comments

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.

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739070 tn?1338603402
by rendean, Oct 11, 2009
Dear Julie,

I'm sorry to hear of your recent decline in breathing. The leg weakness, I think we all experience at one time or another, but the breathing is disconcerting. I'm sure the bad cold is not helping things at all.  I will be sure to put in an extra prayer for the docs to find the answer to this issue.

How long must you wait for the answers to the testing done at the MDA office? I hope you do not have to wait too long for the results.

As for the using the wheelchair, I get it. My family doesn't always "get it" when it comes to what I'm physically able to do and what I choose to do.  Conserving my energy to get through the day  or a particular event has been the source of discussion on more than one occasion.  I'll send good thoughts your way regarding this issue :-)


559187 tn?1330782856
by Sarahsmom46, Oct 12, 2009
Thanks so very much Brenda for your support.  We are adaptable to what is happeneing with our bodies, but our family members need to catch up.  Our lives are hard enough and when we find things that make it easier then we need the family to support us unconditionally.  My husband has been helping with cooking a lot more lately and that has taken a lot of stress off.  

How are you managing right now?  You are about to go back to the neuro soon, right?  

I am hopeful that the MDA results will be back sometime this week.  Then again, the neuro wants me to have another EMG, which I woudl rather not do, so the results might get held up while Iprocrastinate about making that appointment.  

Well, I am off to get a much needed massage this morning.  I hope today will be a good day for both of us.

Hugs back to you,


333672 tn?1273792789
by shoshin, Oct 12, 2009

I am sorry that you are not feeling well and that your are having so many breathing problems. I wish you a speedy recovery and some answers on the breathing issues.

I have had a sore throat and general malaise and lack of energy since last Wednesday and then on Saturday developed what appears to be pinkeye. I have gotten noticeably worse in the past week, especially the walking and stiffness. I have been sleeping a lot, too. I haven't had breathing problems, but I do get these odd coughs. Since I am probably on an immunosuppressant, I hope my body does manage to fight this stuff off. I guess I should feel fortunate that this is the first time I've been sick in the almost 16 months that I've been in the trial.

I finally gave in and stayed home today and am going to see my PCP this afternoon. For me, getting sick usually triggers an increase in the rate of progression that lasts long after I've recovered from the illness. Most or all of my major downhill slides were preceded by some kind of illness. I sincerely hope that won't be your experience.


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