Thanks for all these great suggestions. I called the neurologist today and spoke with his nurse. She said she has never heard of it, but she wants me to keep the appointment because it takes so long to see specialists the first time. She told me to also make an appointment with a rheumatologist.

I asked her if it would help for me to go ahead and have my creatine k. checked and she said yes to do this before the appointment.


If those levels are ok, does that mean I may not have this?

Not necessarily, imbecky. My CK and CRP were usually normal or just slightly elevated; however, my ESR was very high.

My CK was the first indicator test that showed something was wrong. Mine was over 1500. A normal reading doesn't necessarily mean you don't have Myositis. A CK is a reading to show "injury to muscle". This can happen through simple exercise or use of a muscle. It is a piece of the pie. A normal CK is under 200. If your CK comes back super high, then they might move faster knowing something is seriously wrong. If it is normal, it could just mean you don't have muscle involvement at this point. But if you are having a tough time training for your half marathon, I suspect there is something to be found.

What area are you in? Anyone that knows Myositis knows you need to be seen soon if it is suspected. Maybe we can find another Neuro for you while you wait. I actually had 2 appointments lined up with different doctors in case the first one didn't come up with any recommendations.

I live in Arkansas. I have found a neuro that specializes in this in St. Louis, but I have to be referred.

When this began, it stopped me in my tracks. One day, I just couldn't go past 2 miles. I had been running 10 every Saturday. My legs locked up. I had an odd sensation in my hips, like they were just hanging on but nothing was moving them. I had signs before then, painful leg cramps. But I thought it was in my head and ignored it. My legs and hips became very painful and my muscles were swollen. There were large knots in my legs and hips from the spasms. I went to a chiropractor and masseuse to relieve the pain.

Being a runner, I knew that I was having problems with my hip flexors so I found exercises online. However, one or two leg lifts would put me into spasms.

Now I can run some but my legs get tired very quickly. My muscles twitch all the time. And I have problems with muscle spasms. I cannot extend my legs when sitting, or kick the blankets off my legs at night. It takes me a while to start walking if I've been sitting for long.

I am JO:1 Positive. I took steroids for 7 years. Now for the past 4 month i am off the steroids. I am taking MTX..
Try to rest as much as you can, don't run it is no good for you.
Michael

Hi Brcky. I was unwell for two years before diagnosis. My bloods were all normal during that time including my CKs until one day everything was off the wall. Meeting my Fantastic Rheumatologist saved my life and my lungs. Having AntiJo means you have Myositis, it doesent matter what theCKs are doing. The treatment is exactly the same. It matters so much that you are referred to someone who knows this disease. You certainly have many ofthesymptoms I had. There will be inflammation so rest your muscles until you are about one month into treatment and things begin to repair. Check with TMA Myoditis on Google,thisisanother great organisation with terrific advice. If you contact them you should be given names of great Rheumatologists near to you. Letus knowifyou have problems finding TMA (The American Myositis Assosiatio) and we will help. Navigating their site can but tricky but extremely informative. Autumm

There has to be someone in Arkansas that knows Myositis. I know there is a TMA board member in St. Louis but there are other doctors that aren't board members and easier to access. Do you have a teaching hospital nearby or a way to find a neuromuscular specialist? Perhaps call your insurance and ask that they help you find someone? That is what mine did. I ended up at the University of Utah Medical Center in the Neuro division. It wasn't a Myositis clinic but they specialized in muscular neurology and were able to diagnose me and start treating me.

I know this can be scary, exhausting and frustrating. You do want to be treated quickly though as it seems the longer you go untreated, the more difficult it is to recover. I was 4 years untreated and I have had minimal recovery available. I would hate to hear you in the same boat.

I've been searching the internet, but I just can't find any information. The university of LR has rheumatologists, but when I searched the university site for polymyositis, it didn't come up.

When I called the neuro's office Friday, the nurse told me to call my neurosurgeon who referred me and have them refer me to a rheum also. She felt it would go faster if they called. So I am going to try that Monday. I plan to take a 1/2 sick day to get my blood work done. So I will have plenty of time in the morning to make calls.

Imbecky, here's the link to The Myositis Association, where you might be able to find a doctor's name.
http://www.myositis.org/

And here's the link to the TMA's Facebook page. You might want to post a question asking if anyone knows of a doctor in your area.
https://www.facebook.com/Myositis

Hello everyone. I have been dealing with my PM for 3 years and I have never heard the term Anti Jo, so now I will be reading about it and talking with my rheumy about my bloodwork. So far my levels have been low regarding my PM, but everything else is off. It seems as if there is always something going on. My POT was going well and hen I ran out of visits until after the new year, so I now have to request new visits which should be fine. I am going to space them out better. I now have a large re-occurring blister under my foot. My podiatrist drained it on 12/30 and 2-3 days later it was back. I am a diabetic so of course I am more concerned than normal about it. I wasted a visit to my primary, or at least to another doctor who was able to see me in his place and she didn't do anything other than to tell me she had no idea what it was, what caused it, how to treat other than to apply a hot compress to it 4 times a day which I am unable to do since I am at home alone most of the day, so I will do it twice a day. I want my life back. I want to walk without a walker, to drive on a road trip. I want to fly of that is my choice, which right now it isn't, but I want that option.

I haven't really had any fears lately, but I did have some when I left the rehab, as so many people there were lifeless. I had a friend who died recently of cancer and others I know have been annocing that their love ones have died. I am tired of hearing about all of these deaths and at the same time I am grateful that I am still here. My breathing at night when I am in bed scares me sometimes, but all of my test have been good, so I am nt going to allow this weird disease to take over my life. I had a good move and I am still unpacking boxes and buying furniture which I want and have gone without for a very long time. I am going to enjoy my life and not allow this illness to rob me. I am not going to live my life in fear. I am going to continue to read about this illness, treatments, etc. I will decide what works and what doesn't and what sounds good and what doesn't. I am going to try to remember hw to use huluplus, Netflix and every other program that I now have. It is our time and no one is guaranteed any time on earth, no one. We have to thank the Lord and go forward. As always I am not proofreading my mistakes. It takes to long...haha Have a great day/night my friends.

Hi there Brenda. Happy new year to you. Glad the move went well. It's good to read you sounding so up beat. Best wishes. Autumm