I have been on med help in many different forums in the past year, lupus, lyme, fibromyalgia, and autoimmune. Cant quite pin point what I have...stumps every doctor i come to.
From the beginning... I was about 12, Had my tonsils and adnoids removed...I was in pretty bad shape, always getting sick, horribly bad breath, spoke through my nose...the usual.
Then as soon as I hit puberty a year or so after I had terrible episodes of what was later diagnosed as Baslar Migraines. They would start with a personality change, moodiness for a day or so prior, then it woud peak and I would black out or collaps, partial parralysis of my limps, severe pain, no vision, couldn't talk, respiratory distress and inconsistancy, shaking or almost seizing. This would last a few hours or so, then I would slowely come out of it, most times with out hearing, or vision. It would gradually diminish then I would have a complete memory loss of the whole day or two. They were brought on by stress. I had the last one when I was 19 or so.
I was then completely healthy and active, got married and in November of last year I had a miscarriage at around 6 weeks. No obvious reason to why I miscarried.
That month I also moved down from where I grew up in Oregon to live in Arizona.
Last April 09 I suddenly one night at 9pm I felt as tho I got hit by a train. Every muscle in my body ached and hurt, felt soooo sore. It went away the next morning and then once it hit about 9 that night it came back. This went on for about a week only during the night. On the 7th day it didn't go away in the morning. I went to my GP and he did a lupus ANA, RA factor, and SED rate. ANA and RA normal, SED rate high.
Since then I've been to close to 12 doctors, 3 rhuemys, 2 neurologists, 1 lyme disease specialist naturopath, 1 CDC lyme disease specialist, 1 GP lyme specialist, 1 oncologist and now a rhuemy/immunologist at OHSU.
It started out I only had SED rate CRP elevated, then my RA factor, IgM lyme WB positive, IgG lyme WB neg, clean MRI, and now I have elevated light chain protiens, possible early lymphoma markers, really high WBC, high ANC, high metabolic protien, and high IgG in the immunoglobulin profile. Normal ANA, thyroid tests, vitamin levels, and urine protien analysis.They supposively found a bio film community with an active infection, supposively responsible for my symptoms. I took Biaxin for 3 months, there was no change, the prescribing doc doubled the dosage, there was still no change at the end of 6 months total. I am no longer on it.
My symptoms are:
Muscle aches/pains/soreness - feel like they are never "in shape", very sore!
Joint aches/swelling/arthrialgia- elbows feel as though they are injected with jello, hips feel like they need to pop, and knees are usually just really achey (achy). These are the joints that bug me the most.
Pain in hands-small bones in hands and wrists, cant put weight on hands like when crawling or getting up, cramping when holding small items like paper or popsicle between thumb and forefinger
Pain in bones-Like a mid bone break, deep aching to sharp
Extreme fatigue- comes and goes, some days is way worse others on good days is like you have a cold, lack of energy
Chest pain/heart palpations- the pain is like a lightning bolt through my chest, some times it feels like a heart attack, get pain at night when sleeping and it wakes me up.
2 bouts of mouth sores-internal white lesions, gum degeneration, teeth moved, lip blisters (high fever went along with the lesions, doctor could not explain)
Sensitivity to heat- out of body feeling, hard to concentrate, rashes (chest and face) sometimes.
Tingly, pin prickly arms and legs- fall asleep very fast and easy
Vibration in blood- high frequency vibration in body, shakey (shaky) feeling like after vomiting
Lightheaded and dizziness-brain feels like it's floating inside my skull, sometimes feels like I got up too fast.
Memory- short term disturbances, long term memory confusion
Difficulty concentrating and easily frusturated-especially with lots of commotion and back ground noise.
Currently taking: 50,000u Vit D once week, B12 1000, Multi vitamins
When the pain is real bad I take: Flexeral, Diclofenac
I was on tramadol and soma but GP was scared of dependency issues.
When I went to one neurologist he thought it might be some sort of stress induced Basil Migraine. Did a EMG and it had a slight distruptency but the thought it may be due to the meds.
Another Neurologist was convinced it was MS, MRI ruled it out.
#1 Rheumy thought it was fibromyalgia but no tender points. Tried Lyrica, did nothing.
#2 Rheumy thought it was late onset Juvinile RA (runs in my family), but only swelling and no redness. Plus it didn't explain all symptoms.
#3 Rheumy from OHSU doesn't think it is any of these, and not the infection disease. Some other autoimmune disease.
Oncologist suggested allergies. That was not it. He found more protiens pointing to Multiple Myeloma, but this cancer doesn't cause my symptoms.
Now my white blood count is normal, same with CRP and SED rate. Started getting chest pains and heart palpations, in April did chest x-ray, no abnormalities.
I also am allergic to many pain meds, vicodin, codine, darvocet, percocet, and short term antibiotics
The pain goes in cycles- will get really bad for a few days, then will get better and very manageable.
I have no pressure points or anything you can see besides the slight rashing.
I believe that I have far more pain than fatigue, plus the lack of tender points, so it really doesn't fit fibro.
No positive ANA to prove lupus. Clean MRI to rule out MS. And the one missing band for lyme so I can not be diagnosed with that. My thyroid tests have always been normal also.
I just dont know where to turn to next. As of present, the doctor at OHSU and my GP told me to just wait till it gets worse and there is more abnormalities on tests so that we can have a direction to go in. Is there any other test that someone could suggest that I havent tried.
Thank you for your time and sorry about the length of the post.
Unfortunately it can take a very long time to get a formal diagnosis. In my case my tests for Lupus and RA were positive one time and then negative. My symptoms are pointing more to Lupus (and now I have fibromyalgia as well) and he started me on Plaquenil. The plaquenil definitely helped to keep my Lupus symptoms under control and I take Lyrica for the fibro. He felt it was a good sign that I responded well to the plaquenil. Maybe you can ask to give that a try? It does take a few months to do its job.
Thank you for your response. I was put on Plaquenil as soon as my arthritis symptoms...in May of last year. It seemed that it took a while for it to start working, then I felt like I got better but then they decided to take me off everything. I've been off of it since April, and I'm really bad now, so maybe it was the plaquenil that was making me better. What all is Plaquenil used to treat besides arthritis and Lupus?
Thyroidian: I did have an ANCA done in August, it was normal, also 2 MRIs to check for lesions for MS and Sjorgens testing multiple times. All normal.
iris986: I have been on B-12 for 7 months i think....I started talking it because of the illness, to try to keep all of my vitamin levels in prime position.
Thank you again everyone for your responses...I went to my doctor this morning (Rhuemy) and I got a bad rash all over my chest while i was there, he made me do 3 squats and it tired me out and made me dizzy/whoosy, I felt as tho I needed to sleep for a week! So I'm glad he got to see me in bad shape :) He was excited that the Plaquenil was working, so he ordered another ANA, AntiDS DNA, ENA, SED Rate, CRP, Tissue Transglutaminase IgA, Vit D and CK plasma. I'll get the results in a few days. He is very convinced it is either Lupus or connective tissue disease.
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