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MS? Fibro? - Still no diagnosis. Anyone else in similar situation?
Brain & Nervous System | Last Active: May 13 8:19am | Replies (20)Comment receiving replies
For MS testing is a spinal tap for a definite answer. I truthfully have been through a similar journey since I had bacterial spinal meningitis. I got it from a shot of cortisone into my back that accessed. That started my whole down fall.. a lot of your problems seem similar. I was diagnosed with piriformis syndrome.
The muscle attaches from your hip to your lower back. When the muscle is tightens and spasms it pulls on your lower back and hips. Hurts like hockey sticks. The neurologist goes in and Botox’s the right and left side. The neurologist did an EMG to confirm diagnosis. I never had lower back problems. I have fractured my back T7 and I have in my lower back.
I have been diagnosed with Fibromyalgia due to the trauma of the bacterial spinal meningitis that left me with permanent seizures and migraines. I got tired of all the neurologist in Texas since mine died. I went to see Dr Anne Oaklander. In 2018 positive for severe axonal sensorimotor peripheral polyneuropathy. In 2022 started having severe arrhythmias. Did a month holter monitor test. The electrophsiologist diagnosed me with cardiac autonomic neuropathy. I said heck no and walked out. I said something to my neurologist about it. He ordered skin biopsies and darn it came back positive so I had to go back and apologize. I have since then 2012 all my inflammatory markers are high. Negative for everything. Dr Oaklander recommended I go to Baltimore and be tested for seronegative Sjourns. There are other test for it because my bloodwork shows no to Sjourns but I have dry skin, mouth and eyes. Now I am being checked forCIDP. I have tested positive for Epstein Barr Virus after awhile it progress to Gulligen (Mispelled) Barre Syndrome. It is frustrating to be going from 2002 to current with no answers and severe pain. I have stomach ulcers so no NSAIDS. I truly hope you find the answers you are looking for. I truly understand the frustration. I get worse and no answers. The doctors will not treat the neuropathy until they find out the autoimmune disorder. I was told have to treat it before the neuropathy.
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I am very new to connect so I think I responded to you a few minutes regarding a question you asked however I just realized I didn’t see your full post . Thank you for sharing there is so much confusion and conflicted info on determining MS . Spinal tap was done on me as more or less to confirm MRI’s and evoked vision testing and others.
From 2015 I have been diagnosed and treated for MS and GBS.
Two neurologist diagnosed Me with MS
One told me after another MRI w/o contrast (usually w and w/o were done) no exam of any kind not even then mental, physical standard for brain and nerve conditions. Just said mri was abnormal and could be from a variety of reasons he was the head neurologist for MS .
However , spinal tap from 2016 or to order current one which is a test done amongst MRI, evoked vision test and more.
When Mri is abnormal and patients symptoms need to be further tested. I need by last MRI and a new imaging MRA still abnormal mra should what is considered nothing nothing size aneurysm . Some vascular issues.
I became so mentally exhausted and the GBS seemed to be just something I said, but no concern or questions it’s like 6 months of intravenous plasma treatment which I believe as did my pcp landed be in hospital due to the dr.’s lack of concern or advised by nurse giving me ivig to pause a couple weeks when my veins needed heat and other things in order to find them on either arm, when my blood pressure kept getting lower with each treatment I spent more time afterwards in bed. Became anemic , developed ulcer, pneumonia , bleeding internally , blood transfusion
She was getting $3,500 each infusion from my insurance co.
Greed not my well-being took priority . All that and GBS was a note in my chart period. I had spinal surgery and still need neck surgery. Had fibromyalgia years before the journey with my brain.
I stopped seeing neurologist or other necessary specialist for thyroid , body over run with arthritis and on.
I took 3 + years being beat knocked in walks as a young teen mom and wife is there a connection to my brain and neuropathy to MS
I don’t know where to turn