Well, the thankyous said, let me say I am so happy to have someone to talk to.

Yes It is very, very rare, so when I tell people I have this, they say to me, how do they know? What are your symptoms? just like they did when they first told me I had scleroderma, also rare, and when I say I have a myositis very rare.

Well, it goes like this I hope I do not bore you; About six to seven years ago, I got so tired and weak could not walk from my car to a local wallmart I was under very extreme stress and have been for the past nine or so years does not let up. Well, went to a general and she said I was hypothryod and gave me a lecture of how dangerous my levels were, bla, bla, then put me on meds, which made me feel better. Did not take the weight back off I had put on before I was dx, butttt. So more stress and more weird symptoms, my thumbs hurt, I could not grasp anything, or I dropped everything, I changed the way I wore clothes, did my hair, i just thought it was arthritis, or carpel tunnel, so then I started to develop rashes, rashes up and down my whole back from my ankles to the shoulders down my arms. that lasted six months and nothing would help could not stand clothes on myself. Then I deveolped rashes on my face, chest, hands went to an alergist who said allergys, gave me cream, then went to my PCP and she said you are allergic to the sun, so then my hands started to swell, fingers swell, they were blotchy, scalery would change to beet red, and change due to stress, again the doctor said sun and stress, then I started with trouble lifting my legs up to go up curbs, then the stairs in my house again my primary said stress, then I got hot flushes from my feet to my head, then inside my legs, would last hours, then my knee joints, all my fingers, my ankles, my toes, (by the way this whole time my feet are so bad, I can hardley walk on them, feel swollen but are not) then I started to feel weak, my arms I could not lift them up to do my hair, or showering was to much, my legs were weak, i felt like I was dragging around a 500 pound weight. It would come and go, again it was said as stress, then I decided to go to a dermatolgist, who looked at tmy hands and said I am sure you have lupus, did so many blood tests I cannot even tell you, it kept comming back speckled pattern postive ANA then I developed Raynauds disesae, I had it so bad my hands were actually blue, I mean blue, I ended up in the hospital a coupld times with weird symptoms, could not swallow no spit felt like I was going to pass out, another time i had weird reaction to light and felt like my whole upper body was somewhere else spent three days in the hospital, finally said it was anxiety attack, ( i have never had one before this and do not beleive this is what it was) Then another attack this past summer stopped at a stoplight the lights it was summer were too much for me afraid to drive, that weird feeling again. Well anyway, back tot he dermo I asked if he would send me to a rheumy because I was doing my research on the internet and knew something was wrong ( I have never been a sick person) except to headaches, sinus, but not this kind of stuff. So went to the rheumy and he took a couple of hours checking over all my blood tests and his own exam and said you do not have lupus you have scleroderma, now I was really scared. So he put me on plaqunell which did help, gave me trental for the raynauds, and it helped so much so fast that withing a few appointments he changed my dx to UCTD with features of lupus and scleroderma. SEnt me to a pulmalogist, (I wont go into all the tests, now) started to have cat scans, echos bla, bla. Now I am getting worst, my muscle weakness is bad, legs feel like there is tissue moving in my calfs, feet buzz all the time oh yea I developed an autioammune colits also, so my primary says, would you like to have me send you to a neurolgist, and I said, yes, so on I go and that is the best thing I have done. I love her.
She did spinal taps, mris, mra, eeg, emg, nerve conductiont tests and then a muscle and nerve biopsys. went into her officce and she said you have perhieral neuropathy, your eeg shows lessons on part of your brain, your biopsys show inflammatory muscle fibers, bla, bla,gave me anti siezures meds, and told me to quit my job. (believe it or not I am skipping a bunch)ha, ha, well then she said I want you to go to Mayo to make sure we are treating you correctly for the autioammune stuff and everything else, so as inurances go mine would not cover mayos but would cover northwestern universisty hospital so that is where I went in aug and oct of this year, first to the sclero clinic, that is who did the thryoid perixadase antibodys test along with many others and it came back 1200 something and it should be 60 so she upped my thryoid meds, and said go to a endengonalsity, so then went to the neurolgist at northwestern and he wanted to start all my neurogical tests back and I was suppose to go there last week, went to my neurolgist here and she said why go through those all again, susie, I told her about he endengolist I had an appointment with and she said, you know what I can do all that for you here, you have had enough so she did another thyroid perxidase test, and the other thyohglobin, (i know this is wrong spelling) she said,that since my meds were upped three months ago it sould have been time to adjust these tests, but they did not all came back extrememly high, she said that this is causing my congitive problems, becuse I forgot to mention I had gotten I could not spit the words out if you know what I mean, I would say the wrong words like window for mirror, small for low and when I was tired or stressed I sounded illeterate, and my short term was getting worst along with my balance I walked like a drunk I would walk sideways instead of straight ahead, but did not know what disese was causing what. so that is when I got the HE diagnoise, and also my rhuemy changed the meds of mine in May beccause of the myositis to an autioammune suppressent,

Now sorry so long It is a long story and did not put it all down, lol, I am sure yours is the same, I would like to hear if you do not mine.
There is power in each others storys I believe. The other thing I have never heard of your drugs you were on, can you explain to me/
Also just had my first 90 min IVinfussion today, yippie, hopefully it will help all I have. (wouldnt that be nice)
Oh I was going to explain the He to you, next post ok
Susie