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Mon, Apr 1 9:34am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@sacker I’m sorry 😐 you’re experiencing so much but as everyone has already validated for you, YOU are absolutely right in taking the best therapeutic steps for you to move forward. I am living proof that anyone is diagnosable EVEN if the proverbial “they” don’t know who, what, when, why, where life and traumatic events have taken you! I too deal with maintaining a good mental and physical pain that requires a. A listening hear b. A vote of confidence c. Caring that goes Above and BEYOND the call of duty in these extremely stressful times and d. Discovering these forums and helping people like ourselves persevere.
I had several “change who you are” religious excursions and it was scary when I looked back at my medical records to see someone actually wrote something in MY CHARTs that I knew in my heart was someone else’s opinion (caretaker, home-health-aide, et al). Stay TRUE to yourself and be careful!! Lots of great things heading your way…..
Candi

Thu, Mar 28 3:14pm · Should I see a neurologist? in Brain & Nervous System

Definitely want a Dean of Internal Medicine if you can get one. I had to go to a drug called Amitiza and a syrup called Lactulose because all natural, Metamucil, Miralax, etc. couldn’t solve the problem that my stomach wasn’t digesting after 72 hours, colonoscopies and esophograms were a combination of waterboarding and starvation without REPRESENTATION;)! Good luck on your quest; I have had to go the TOP of every specialty in the WORLD in order to close down the REFERRAL out to tens of sub-specialties out there!!!

Wed, Mar 27 2:15pm · Seizures and surgery in Epilepsy & Seizures

Just a couple seconds makes all the difference

Wed, Mar 27 2:00pm · Seizures and surgery in Epilepsy & Seizures

I am 41 years old and have all four types of seizures plus a plethora of other undiagnosed neurological complications and an extensive medical history that I have been studying and struggling with for many years now. I just got out of the hospital myself so please forgive me if this has been repeated. Please look at some older posts if this gets too complicated. I have part MS, ALS, Parkinson’s, an AUTO-Immunodeficiency as well as nine documented cases of Shingles b/4 I was 34 years old. I retired from my CEO position to explore why I couldn’t remember how to get home from my office (round trip was only 0.2 miles). After exhaustive testing, they found my neurological problems may have been an attempt at poisoning me and neurological-psychiatric Aptitude testing was showing a serious rapid decline in spacial awareness, recall, etc. when I had a photographic memory and was a very advanced child early on in life. My first seizures started as hallucinations but were triggered by motion…automobiles, etc. and we’re definitely tied to time of year. I was diagnosed very early on with some form of beta thalassmemia as my very young grandfather was simultaneously given two-weeks to live with an incurable form of leukaemia at the TIME. My family was large and all military service members so they’re WWI and WWII early deaths were just mistaken as part of their service and sacrifices for the US of A. My paternal grandfather 👴 fought his diagnoses as he had a grandson in Desert Shield 🛡 who would have his one and only daughter on Dec. 7th, 1990. This was significant as my grandfather and all his 15 siblings served in the US NAVY and five were actually at Pearl Harbor when Japan 🇯🇵 tried to invade the US. He was kept in an isolation room and dedicated his life to science. His two-three weeks gave us almost three years and he did get to see his great-granchild. His grandson continued his service and was watching over me when he passed away at 41…I am 41 today and trying my heart out to beat these problems and find a cure as well. The only way they’ve been able to manage my seizures is through a high level of Valium. I have several life-threatening injuries that have me in and out of Brain and Spinal Rehab programs. No other drugs worked so we’re using a bunch of older drugs off-label to manage my life. It’s taken me along time to reconcile with a one-day-at-a-time life and fighting ignorance at every turn. I have even been accused of being crazy because no one could possibly understand this in two minutes yet they still try and continue to try and reinvent the wheel when MAYO Clinic and I found a way to make it just a little easier every day. I have lost so many but care so much for those that are experiencing the same thing. I try hard to be available when possible. I know I digress so Keep Hope and understand that the lack of Dignity, Human Kindness and such as will never matter as long as you KEEP LOOKING UP as Michael J.Fox has written and said.

Oct 20, 2018 · Burning sensations on skin pressure points, i.e. elbows, forearms, hands buttocks, feet. in Just Want to Talk

@anniemaggie Finger tremors are commonly seen in cerebellum atrophy. They’re intermittent as opposed to resting tremors

Oct 19, 2018 · Burning sensations on skin pressure points, i.e. elbows, forearms, hands buttocks, feet. in Just Want to Talk

@anniemaggie I wish you luck. My disease is neurodegenative like MS (lots of overlap) and I understand how hard it is to find a great Neurologist. Fortunately, I found mine at Mayo in Rochester, MN even though I am from Dallas, TX. He moved to the Mayo AZ Clinic and I have followed him all my years. I have found that a Neurologist with a neuromuscular background has been more helpful than just a general Neurologist.

Oct 19, 2018 · Burning sensations on skin pressure points, i.e. elbows, forearms, hands buttocks, feet. in Just Want to Talk

@anniemaggie I also have cerebellum & cerebral atrophy and initially presented with burning in several places such as you’ve described. Have you been tested for small or large fiber neuropathy? An ANS Tilt table as well as EMGs/NCVs confirmed both for me. My overall disease is complicated but was just wondering if they ever explored those for you.

Aug 25, 2018 · Nerve blocks in Brain & Nervous System

@marinelastef I have had occipital nerve blocks and many nerve blocks in other areas. I am curious how it was determined that the blocks were the cause for the muscle and nerve damage and weakness. I ask this because I have some doctors that cannot explain some very rare but serious health issues that no institution has ever been able to pin-point the cause and your question peaked immediate interest to me. I have cerebellum volume loss, multiple-system atrophy including the esophagus, vocal cords, legs, arms, stomach, bladder, polyneuritis and a host of other issues that were diagnosed after the occipital nerve blocks.