My question is aggrevating for many medical professionals as I have seen but I still need it answered.
I have had a Diagnosis of and treated for Migraines, Hashimoto's Thyroiditis, Chronic Pain Syndrome, Diffuse Myalgias, Chronic Sinusitus, Chronic Inflammatory Disease, Inflammation of the Circle of Willis, Muscle weakness, Bladder Failure, Inflammatory skin condition: Dermatomyotosis and Irritable Bowel Syndrome.
I have been ruled out by way of anBlood ANA test of Lyme, Graves, RA, Lupus etc. Since 2004 I have been given medications to treat all these symptoms to no improvement. I have a few good months and about 6 straight bad months of severe muscle spasms, burning...I mean excrutiating burning and stabbing pain in my legs and arms. Sometimes I fall alot and have a difficult time keeping my balance. I have been in the ER 6 times this year. The Er Doctors tell me my MRI/CT comes out normal and it's basically all in my head.
Just for grins & giggles I had a MMPI (Psych Eval) performed which says I have PTSD (Post-Traumatic Stress Disorder) and Major Depression disorder.
Knowing all of this Why have the doctors been so reluctant in Diagnosing my problem? and..
Why will the doctors not label all of these as contributing to the other or Specify that these are all symptoms of MS?
I have had one 3 doctors out of 12 that tell me unanimously that they can not RULE OUT MS, it is POSSIBLE MS, but they can not confirm until they see plaques on my MRI.
Have you done MRI of the spine? It's true, it's difficult to diagnose until the MRI shows areas of demyelination (lesions or plaques). MRI and CT scans are the most sensitive diagnostic imaging technique, you did that...What I read is in Laboratory findings CSF is abnormal in more the 55% cases..(have you done tha?).I think doctors ruled out all other possible diseases, so it looks like they are waiting...and see, because MS is difficult to diagnose and there is no specific therapy......(I've started to read about it and gave up, sorry) , you really should try the MS community , they for sure can give you more specific details about possible approach...Good luck, can't help much.
Hi ! In my opinion, it certainly sounds like your symptoms could be due to fibro/CFS or another condition.... possibly MS. I can tell you that burning skin, shooting & stabbing pains, muscle spasms, gastrointestinal problems are often seen in fibromyalgia patients. Also, frequent sinus infections (I had chronic sinusitis) and even bladder problems are often seen in severe fibro/CFS cases. Do you have frequent thirst and urination ?
I have/had excruitiating burining in my torso, front and back and my throat. At first, I thought it was a neuralgia in my throat that was slowly creeping and expanding to other parts of my body. I mean burning!!!!! I have never felt burning before and it's awful!!!
During this time, I was also on Lyrica for neuralgia but it is used to treat Fibro. Apparently, Lyrica can't chemically treat muscles. For 4 months, I complained to Doctors of this unbearable burning and muscle tightness. Not one got up out of their seat to examine me. I went to a massage therapist to get her take on my body and she stated she had never seen anyone as tight as I.
The next time I went to the Doctor, i demanded that he get up out of his seat and feel my muscles in my neck and torso. He wrote me a referral for physical therapy.
I got lucky and found a great Physical Therapist. After about 1 month, 75% of my burning is gone. I still have pain and I have a long way to go but I'm on the road to recovering that part of my body back.
In my experience, Doctors like to find a "chemical" solution for everything. I think a lot of them look at the body in compartments, not as a whole. Since all of your tests have come back negative, I would look at finding an amazing (hard to find) PT and see if they can help you with the burning and muscle spasms.
I too have the excruitiating burning at times in my thighs and arms the most...to the extent that I would vomit from the pain. Almost daily, especially if I am running around all day, my legs go into a severe spasm from my hip to my toes and they are hard as a brick. The ER nurse last week called it a muscle seizure. I get them so bad that they will creep into my abdomin and cause my stomach to spasm forcing me to vomit again.
My regular Neurologist & Drs never see me in action so they only have the ER reports and my word to go off of, so they really arent that panicked about it.
I do not have trigger points for Fibromyalgia. They have check me several times.
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