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Years of back issues and newly added afflictions.

Started by srgal on 01/27/2017 12:33pm

I have been treated for cervical, thoracic and lumbar Spondylosis, herniated discs, Osteo and rheumatoid arthritis, Cervical Radiculopathy, lumbar degenerative disc disease, discectomy etc. Although my spine requires several corrective surgical attempts that may or may not help me, they are impossible due to my complex cardiac condition. Two years ago, I woke up and could not stand (being at a 45 degree angle, looking like a table, unable to walk no more than 5 steps, only able to stumble causing 3 catastrophic falls, due to excruciating pain on my entire right side, including arm,hand, fingers, exceptional pain in my buttock, outer calf, and foot. I was turned away from MAYO CLINIC twice, refusing to give me an appointment after my pain specialist provided my entire history, copies of ALL MRI's, THORACIC, CERVICAL, LUMBAR AND BRAIN,.x-rays. Moving on to see 22+ physicians here in Houston , thanks to my devoted pain and rehab specialist who located and arranged the hard to obtain appointments (orthopedic, neurology, infectious disease etc.etc. Some of the 22+ specialists had some unique resolutions; here are only two:massive doses of steroids (which being an insulin dependent diabetic, that treatment suggestion terrified me) but assuring me I would have the ability "to dance in 2-3 days," another diagnosed dual carpal tunnel syndrome, not caring to dance nor have I ever or had the desire to walk on my hands; these were not viable solutions for me, only wanting my abilities to stand and walk restored, and hopeful a reduced level of excruciating pain.My devoted pain specialist had a large number of "out of the box" labs run and it was determined I have EBC(Epstein Barr Virus). I had to wait 6 weeks to get to see the best of the best that treats EBV, LYME DISEASE, HEPATITIS AND HIV etc. (Having additional genetic tests, genetic labs, including the 72 hour EEG with video done in my home. Testing revealed I am positive for MHTFR, with 2 of the 3 mutations,, which sheds light on my and my family's early age cardiac events/cardiovascular disease labeled "lousy family history ". ) Learning that MHFTR and its mutations are inherited, it explains my Fathers lifetime battle with exceptionally high number of myocardial infarctions, eleven (11) to be exact, starting at age 22 and his life ended at the early age of 49; additionally my son, Olympic trial level athlete in swimming, died 5 years ago at age 33 from his one and only fatal heart attack, so the MTHFR thread of hereditary is obvious. Yes, "lousy family history " but now I have a definition of "lousy" )my genetic labs also revealed H Pylori , ANEMIA, (WHICH I HAVE STRUGGLED WITH ALL OF MY LIFE, I WILL BE 68 IN A FEW SHORT WEEKS). I HAVE BEEN PRESCRIBED IRON, VALTREX, VITAMIN D 6000 iu's daily,B12 INJECTIONS WEEKLY, HAVING HAD TWO(2), FOUR MORE INJECTIONS REMAINING UNTIL I RETURN TO THE INTERNAL MEDICINE SPECIALIST. I AM NOT SO DENSE NOT TO KNOW THAT THE PAIN FROM MY BACK & NECK AFFLICTIONS WILL DISAPPEAR, I HAVE HAD FULL SPINE CHRONIC PAIN FOR AS LONG AS I CAN REMEMBER, WELL IN ADVANCE OF THE SUDDEN LOSS OF THE ABILITIES TO WALK AND STAND HAVING THE ADDITIONAL PAIN THAT CAME ALONG WITH THOSE SUDDEN DISABILITIES.
HAVING FATH IN THE EXCEPTIONAL PHYSICIAN THAT LOCATED AND DETERMINED THE MOST RECENT OF MY CONDITIONS, WHO DIRECTLY STATED WHEN I ASKED " WILL THIS TREATMENT PLAN, WITH POSSIBLE CHANGES WILL RESTORE MY ABILITIES TO WALK(now I require a walker, transport chair, wheelchair or cane) AND STAND UP STRAIGHT FOR MORE THAN A FEW SECONDS, STOP STUMBLING & FALLING?" SHE IS VERY STRAIGHT FORWARD AND HONEST REPLIED, "THATS OUR TARGET, AND WE WILL WORK ON THIS REGARDLESS OF THE AMOUNT OF TIME IT MAY TAKE".
HAS ANYONE EVER HEARD OF THE SUDDEN LOSSES TO STAND AND WALK, ( WHICH I HAVE BEEN TESTED FOR ALL OBVIOUS TRADITIONAL REASONS, I.E. PINCHED NERVE, MASSIVE FRACTURE ETC.,) WHAT WAS THE REASON (s) THAT CONTRIBUTED TO THE LOST ABILITIES, WHAT WAS THE FINAL DETERMINATION TREATMENT PLAN, LENGTH OF TIME THE PLAN REQUIRED AND THE FINAL OF WHAT CAUSED THIS AND IF RESOLVED, WHAT WERE YOU TOLD IF THE LOST ABILITIES TO WALK & STAND STRAIGHT WOULD RETURN AND IF SO, WHAT WOULD CAUSE THE LOST ABILITIES TO RETURN?
ANY INFORMATION AND OR FEEDBACK WOULD BE GREATLY APPRECIATED., AS LIVING WITH THE ADDITIONAL PAIN AND INABILITIES, SEEMS NEVER ENDING...THE LIGHT AT THE END OF THE TUNNEL APPEARS TO BE THE HEADLIGHT ON A LOCOMOTIVE RACING UNCONTROLLABLY TOWARDS ME, NOT THE LIGHT OF HOPE.

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Hello, srgal--thank you so much for taking the time to write today.

We are so sorry to hear about everything you've been through. We wish we had answers for you, because you deserve them. When it comes to why you've lost the ability to walk and stand properly, the root issue could be orthopaedic, or vascular, or neurological, or something outside of those specialties. We apologize that we are unable to help clarify why this is happening to you.

We can't shed light on your questions, but we most certainly hear you. And we hope there's another person in this Community who resonates with your story and perhaps can share their experience with you. Our best advice is to keep fighting. Keep asking your doctors questions. We firmly believe the answers are out there. We're rooting for you.

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