Have any of you had myositis for over twenty years ?
Not yet but in my 16th year.
Hi Bethann,
I was diagnosed 5 years ago, but started to get sick about 10 years ago.
The 20+ crowd is out there!
M
Bethann
I wasnt diagnosised until 2009, but my CPK has been elevated for about 20+ years. I had the unexplained muscle pain, unexplained abnormal emg's,& fatigue . it wasn't until my ANA came back abnormal that the drs really started paying attention. im not really sure why they didn't pay attention until that point, but that was the turning point, and my background is medical. so talk about being frustrated years and years of abnormal tests with no answers then bam ANA abnormal and the lights went on.
I went through a similar scenario. Very frustrating. Except my ANA was normal. Finally sent to another specialist who did a biopsy of the rash. It’s what diagnosed the problem. Over two years they are still shifting me from specialist to another.
Yes it took them three yrs to do a biopsy on my leg to find out what I had, and many dollars and lost of Hospital time. But that was then and now I am thankful that some one thought of it at last.
I have avery important question and hope you can help out! There are times that I go into a freeze sort of thing I chill and even my teeth chater like crazy my hole body feel so cold I just feel like I am going to die in a cold freeze my body trimbles so bad the hole bed shakes and my body hurts. Some think I am having what they think it's sort of like seizures or something like that but not totaly seizures. Do any of you go through that sort of thing ? When I get warmed up again I feel so sore and painful from the shaking so bad it is really frighting so if you can help me fiqure it out I would love the help. Thanks gentle hugs for today !
Well I am about to show my smarts, I ask a question and there are six reply's but I can't find any of them. So can some one walk me through how to find them please !
I have Reynard as well it sounds simular to what I experience. I am cold all of the time though. If I get too cold I start shivering and my legs cramp up. Do not know if that is close to what your describing. I have to take a sweater everywhere even in 90 degree weather.
Bethann said:
I have avery important question and hope you can help out! There are times that I go into a freeze sort of thing I chill and even my teeth chater like crazy my hole body feel so cold I just feel like I am going to die in a cold freeze my body trimbles so bad the hole bed shakes and my body hurts. Some think I am having what they think it’s sort of like seizures or something like that but not totaly seizures. Do any of you go through that sort of thing ? When I get warmed up again I feel so sore and painful from the shaking so bad it is really frighting so if you can help me fiqure it out I would love the help. Thanks gentle hugs for today !
I’m just as lost as you.
Bethann said:
Well I am about to show my smarts, I ask a question and there are six reply’s but I can’t find any of them. So can some one walk me through how to find them please !
Thedona, I guess it's just you and me girl I can't get to any one but you but thanks. How long have you had the Reynard and do the chills turn into something like seizures ? Do you also have myositis ?
Took me awhile to figure out reply …lol have dermatomytositus. Sometimes the cold is so overwhelming that I shiver like crazy. But not what I would call a seizure. How ever look it up Reynards on Webb MD. If it sounds similar take the information with you to your next doctors appointment. I have found doing my research makes the appointment so much easier. This whole walk is frustrating. Those with dermatomytocitus are in such a minority. Believe me I am no expert on how things affect others. Only advice I can give you is to keep paper and per with you all the time. Like a small spiral notebook and write things down as they come to you. That way all your questions are there with you. I am going to be signing out but leave a reply if you have one and I’ll check it out later. It’s nice to be connected.
Thedona, I did look up Raynauds and it is what I have also I am sure of it why the Dr's didn't think of it I am not sure but I think I have a big dose of it for sure. My attacks are some times very strong and last for up to 45 minutes at a time and are very strong I can talk but it's hard to breathe and talk. I go back to my regular Dr in a month so I am sure going to bring this up to him. Thanks so much for leading me to the Raynauds site very helpful. Happy Valentines Day !
Thanks I just need to take my time and find my way around the system some days I am in a fog guess it is all the stuff wrong with me medically so today must be one of them. Thanks dancermom you were a big help and I will talk with you again, would like for you to be one of my friends if you want. Thanks again !