A Neurological Cocktail , Anyone Else?

I understand the part about “ people think you are okay.”

People really don’t have a clue do they?

All I can offer is that I am so terribly sorry for you. I wish I could hug you.

Born premature, massive stroke at 6 months old gave me right sided mild cerebral palsy with mild spasticity. @17 diagnosed with fibromyalgia, @20 diagnosed with intestinal pseudo obstruction. After too many orthopedic surgeries (related to the CP), diagnosed with CRPS in my right foot. Random adult onset food allergies destroyed any social life (black pepper being the worst). That was quickly followed by all over itching, facial flushing, etc. which was diagnosed as MCAS. Severe nausea started (lasting days at a time) and eventually a brain CT showed mild Chiari Malformation and because of the golf ball size hole in my brain, my brain settling crooked causing my brainstem to be impinged - not a candidate for surgery and the likely cause of the nausea. Lastly went numb head to toe on my left side for about 18 hours and that turned into random neuropathy pain anywhere central or left side of my body (trigeminal nerve, chest, abdomen, genitalia, arm, hand, fingers, thigh, knee, shin, feet, toes). Pain is only fully controlled by steroids but also have normal tension glaucoma so steroids are not recommended. You are not alone.

I can relate, I also have dystonia (cervical), peroneal neuropathy, mania & depression (Bipolar disorder), pseudo seizures until finally diagnosed with focal seizures to generalized full blown seizures. Be careful of the diagnosis of pseudo seizures, if the eeg is normal, they assume it’s in your head and a psychiatric problem. Sounds like you need a really good work up, not just for your physical health but for your mental health also.

An additional comment, I am not saying you have a mental condition, just that mental health is as important as physical health.

I feel like I’m being electrocuted as well and started having involuntary movements. I was in the hospital for seizures but the video EEG shows normal brain activity. I have been in a medical mystery roller coaster for months now. I feel for all of you.
Kat

You have a forest of problems in front of you. SO, only try and attack 1 or 2 trees (problems) at a time. You must search for the little things that will improve your quality of life...little by little.
I have been fighting a spinal cord injury since 2006. That led to Adhesive Arachnoiditis and now CSS ( Central Sensisitation Syndrome) due to the original spinal cord injury. 2 years ago, I really really began to decline rapidly. I've lost 95#'s since the last 2 years. Swollowing is now very painful.. does that sound close? I had a wonderful specialist who sees cases such as mine. He told me that I was closer to a permanent feeding tube, so he got my attention. Suggested eating several very small meals to help with nausha. I believe this is helping.

If you have questions that I might help with, please let me know. You will have to change inorder to get better.

I have had to completely change my life to handle all of this. Pain and nausha are constant. So. We attacked the eating problem, because I can't afford to lose anymore weight. I over cook meat, so it's fall apart tender, and I always make gravy. If I "lube" my food, add mashed potatoes, and you have about 50% of my diet now. I can eat better doing this. I did a lot of searching to find this out. For now, I've stopped my weight loss.

I am experiencing damage to my thalamus as a result of the original injury. It isn't processing sensory input from my periphery nerves correctly. So, sleep deprivation happens because the brain will no longer shut down and allow you to sleep.

Iowa has a medical marajuana program and I am a registered user. Why? By 2009, i was being given 300 mg of morphine and 100 mcg of fentanyl a day...and I was dying. Spent 5 weeks at the Mayo PRC and came off all the narcotics.

I was encouraged to register for the program when it first became available. Without out it, I simply couldn't get out of my recliner and do much of anything. tHC & CBD takes about 20% of the pain and nausea away. Something to consider.

Keep searching and don't give up. Find things that will improve your life a little at a time. Push hard, and win. It isn't easy !!! My last Mayo specialist told me that there isn't anything that they can do for me. Bummer. But he told me " It's all up to you! What you make of
your conditions depends on how well you can handle the symptoms." I know that I have to keep moving and looking in every corner for Hope.

I pray that you find Hope on your journey.

God bless