new development - a vent
 

I have posted on this forum a few times. I check it every day but often don't think I have anything to say. Well, today I am asking for some sympathy.

I have been diagnosed with MS for at least 15 years. My symptoms have been mild with only 1 or 2 real flairs. I considered myself lucky. Lately my CPK levels from my blood tests have been high. My neuro was very concerned but I figured it was no big deal. Then, I began having stiffness and pain in the muscles of my thighs, arms and back. I knew it was not MS but did not know what to think. I decided it was just old age and started taking motrin. Well, the motrin did not agree with my stomach so I went to my PCP and asked for something for pain. Her response was, "let's find out why you are in pain first." She ordered a muscle biopsy - not fun - and I am now diagnosed with polymyositis.

What is this? you may ask. It is a rare, autoimmune disease causing muscle inflammation and weakness. Like I need something else! My mother always tells me how proud she is of me because I do not complain and just get on with my life despite MS. I have decided I am not going to be the same this time. I am complaining. I am whining. I am mad!

The treatment for the myositis is low dose steroids so I am now on a prednisone taper to find the right dose. I feel less pain and stiffness already. I am hoping that the steroids also help the MS so there is some benefit of having two whammies. I hope next time some muscle impacting illness comes along it decides to miss me.

Autoimmune diseases sometimes like to follow each other. My uncle had a heart problem that was caused by an autoimmune disease. (he had high blood pressure) A while after finding out he had to have a transplant, he discovered that he had diabetes too.

My dad has the same high blood pressure, but had done more exercising when he was young, so his heart problem didnt show up until a year or two ago, and he's no where near as bad as his brother was. So far, he's just got the high blood pressure.

My family has a history of autoimmune diseases. My dad's sister has rheumatoid arthritis...my mom has allergies. Some of my cousins, on both sides of my family, have serious life threatening allergies to foods. My paternal grandmother became diabetic in her later years as the alzheimers got her. My other grandmother died from pulmonary fibrosis.

Autoimmune diseases suck. All of them.

Knitten kitten -- I think you definitely deserve a major vent! And occasionally, your family needs to hear that you are not so tough and could use some understanding. Hope the steriods help!!!

I'm really sorry to hear that KnittenKitten. But, I'm glad it's something treatable and the meds might help both conditions. Guess we have to find the good in it.....however small it may be. :rolleyes:

You definitely deserve to vent. And gripe and whine. And get angry. Let your family help you in any way they can. It makes them feel like they've got some control over it, too. Sometimes it's nice to be taken care of....even if it's just for a little while.

I hope you find the right dose of steroids and it helps both the MS and the polymyositis. :hug:

I'm so sorry, KnittenKitten. :hug::hug::hug:

At least you know what it is so you can treat it. Yes, next time you see something coming, be sure to duck! :)

I'm so sorry KK :hug:. It seems like we should get a "free pass" from other illnesses since we already have one devastating disease :(. I hope everything works out ok with the steroids. Feel better soon :).

Lots of hugs for knitknit..:hug::hug::hug::hug:

So sorry for your dx of polymyositis. You have every right to complain, whine and be mad and we are all hear to listen and give you support.

Even warriors get weary and tired. Sorry you are having to go through another tough diagnosis. :grouphug: