Help me solve this mystery

[mom_n_pain]

Okay, I have been a medical mystery for over 18 months! I have chronic pain, joint pain & stiffness, chronic fatigue. I am very cold sensitive as well as photosensitivity.I have pain in my feet when standing/walking it feels like my bones will break through the skin. I was dx in Nov w/Fibromyalgia by a Rheumatologist. My PCP says no,b/c I respond to Prednisone however he has no answers. My latest bloodwork shows: ANA:Positive ANA TTR1:Abnormal ANA PTR1:Speckled CRP:High
I have many symptoms of Lupus I think but my PCP says that isn't it(?) He says he really doesn't know where to go from here. Can anyone give some suggestions as to what this might be, where to go for help? I live in a small town in East Texas and we do not have many specialists available.

[mercygracious]

I started getting symptoms in 2003.  Started out with tingling throughout my brain and entire body along with alot of other parathesias such as pins and needles and burning sensations in head and body.  Got extreme fatigue from time to time and had extreme weakness in legs along with balance problems.  Also, would walk crooked, slur my speech, trouble with memory and concentration, felt like something was crawling in my head, pain in my eyes, buzzing and clicking in my ears, legs hurt, muscle spasms in legs, twitches throughout entire body and alot of others symptoms if we ever continue this discussion and you have the time I might elaborate on those.  But that is a quick , short list of some of my symptoms.  Do you have any of these symptoms?  Last year I broke out with a rash on arms and legs.  Have you had any kind of a rash?  Like I said I have gone undiagnosed since 2003 and no one seems to have a clue what I have.  It is so disheartening.  I just wanna give up some times.  But, I will tell you this I have most recently had the pains in my body as well. I have also felt like my nerves were being constricted at times and something was clenching something in my body.  Most recently I have alot of movement in my body along with vibrations in my legs.  After my rash I got extremely ill a few times and had to go to the ER but they didnt have a clue what they were even doing.  ER's are a total waste of time and money.   They will let you die.  I hate going to the ER for anything.  Anyway, what kinds of docs have you seen?  I think I have some type of vasculitis but can't get the docs to agree.  My main question to you is are your symptoms throughout your entire body or centrally located to a certain area (as far as the tingling) goes anyway?  I am terrified every day of my life.  I am getting worse and worse and no one does anything for me.  I am feeling a strong pulse through out my entire body and am always aware of my heart beat.  Have you had MRI on brain?  Mine shows some small, white matter which some docs thinks mean something and Mayo doc doesn't think it means anything.  He says anyone can have white matter in their brain.  Don't go to Mayo whatever you do.  Well....my next stop if I live that long will be the Cleveland Clinic more than likely.  Will be awaiting your reply.P.S.  When I started getting my symptoms in 03 I also found out I had the EBV virus!!!!  Have you visited that forum?  If not, u should.

[mom_n_pain]

Thanks so much for your posts. So far they (DOCS) tell me that RA has been ruled out as well as Lyme disease. I have such a long list of symptoms some of which come and go. They say that my symptoms do not follow any "text book" I was fine until Sept 06 when I was dx w/EBV after that I just haven't been the same. All of the things going on started in Jan 07 and the doctors say that they cannot possibly be related, I just had a run of bad luck! Seems pretty odd to me.
Thanks again.

[Shotzy]

Have you looked into Lyme Disease testing?  If not, go to a reputable Lab ( igenex in CA) and seek care from A Lyme Literate medical Dr.  (LLMD) They are hard to find but well worth it ( my sister in law suffered the same symptoms and is much better with 20 months of intensive antibiotic treatment).  Just another idea -

Be well.

[Bhupinder Kaur, MD]

Hello,

Almost all people with SLE have a high ANA titer. However, most people with a high ANA titer do not have SLE.

Raised ANA can also be found in rheumatoid arthritis.As you are having some of the features of rheumatoid arthritis along with raised CRP which is there in RA, pls get RF(rheumatoid factor)blood test done.

Raised ANA is also found in scleropderma, sjogren’s syndrome,myositis ,raynaud’s phenomenon,Hashimoto’s thyroiditis and Addison’s disease

Raised CRP is seen in atherosclerosis and arthritis.

Pls discuss these possibilities with your doctor.

Take care and do keep us posted on how you are doing.