I don't know what to do anymore

@lookingforanswers2022 You have been through so much for so long, and I am so sorry that you have had to endure this with no one being able to give you the answers that you want and need. I pray that Mayo will be able to get to the root of the issues for you and provide treatment that will give you some relief. I encourage you to keep advocating for yourself, and don't give up. Please let us know how you fare with Mayo. We all here care about you and want the very best for you.
Our thoughts and prayers are with you. 🙏🏼🙏🏼🙏🏼

I'm so sorry that you are in such an awful situation and have been for years! How sad! I have no physical answers for you or Doctors to recommend but I do have a suggestion that should work and that is God! He made you and he can fix you! Pray fervently to God and ask for his healing. Tell him all that you wrote in your message. He will answer; although it may or may not be soon. I had severe migraine headaches for 2 years and it took 2 years of constant praying by me and my mom but God did answer my prayers. The headaches stopped completely. I've never had another migraine or regular headache in 50 years! So just start talking to God like you were talking to your best friend and he is! You have nothing to lose and everything to gain! It does state in the Bible that if you ask, it will be given to you. I will start praying for you also. I wish you the best and God bless you!
PML

@lookingforanswers2022
Unfortunately, the sad truth is that sometimes illnesses can't be treated or ever diagnosed. My epilepsy couldn't be effectively treated for 45 years. My neuropathy continued to get worse with more complications for nearly 40 years. But I accepted my conditions long ago and that I wouldn't allow my health conditions to dictate my life.
Doctors want to do a couple surgeries but I won't allow it.
I know it's easier for me because at least my conditions have been diagnosed. I wish you the best,
Take care,
Jake

I’m wondering why you can’t get an official disability. Sounds like you could qualify but I’m not you and I have no answer for you. My disability is psychiatric and I’m qualified. There are many disabilities in the “ big book” of disabilities. I don’t know if there is anything for you. There should be. I had to get a doctor’s diagnosis for 1 year and copious amount of paperwork but I did it without paying a doctor and my first try I got it. Very rare but my own experience shows that it could be done. They always deny the first to 3rd try. They save money that way. Maybe there is something for you. I have a hard time believing that in today’s society nothing is available. That was my case anyway. I worked hard to get a first time approval as you normally need a disability but I did it myself.
I’m not saying that there is nothing for you and I’m sorry I can’t help you. Hope you can be helped.
Good luck

It sounds like you have been through a lot, and I can truly empathize with the pain, frustration, and challenges you are facing.
I have been on Worker’s Comp disability for over two years now due to a fall at work, which affected the entire left side of my body from head to toe. I have already had spinal fusion surgery at L4-L5, which has not healed properly. My treating doctors are determined by my Worker’s Compensation adjuster, and I have no control over the doctors I see, my care concerning medication, treatments, alternative methods, surgeries, etc. It takes an absurd amount of time for them to approve doctor appointments, doctor's orders, prescribed treatments, and additional physical therapy, which only prolongs the pain and worsens it.
The fall caused the need for spinal fusion surgery, a full tear in my rotator cuff, a bulging disc in my neck, ongoing neurological issues from the concussion, and now a herniated disc impinging on the nerve roots at L5-S1. The nerve damage pain I am experiencing from all of this is unbearable at times. The financial hardship due to being out of work for such a long time, and receiving 2/3 of my previous weekly pay, has caused a tremendous amount of anxiety for me and I suffer debilitating bouts of depression, all of which have been diagnosed during a psychological evaluation, and the recommended therapy and medications have been denied by the adjuster.
Being out of work for two years has been exceedingly difficult, but I have used that time to research extensively my conditions, and the available treatments and lab tests that were not disclosed to me by my doctors or the adjuster. As soon as my case is settled, I will be able to choose the doctors I feel are the best for me, and hopefully, that will help.
In doing my research, I discovered many different lab tests for my conditions that were never offered to me. Being on Worker’s Compensation has been a financial strain and paying for lab work out-of-pocket was not an option for me. That is until I found Jason Health. It is a website (jasonhealth.com) where you can choose and order lab tests without a doctor's referral or prescription. The cost is very reasonable, and I have used them many times, and all of my tests were performed at a Quest lab.
I saw my PCP recently and she ordered an extensive amount of blood work, and my total cost through Jason Health was $131. My labs came back showing many tests that were out of range. My red blood cell count, hemoglobin, hematocrit, and ferritin were all extremely low, and my platelet count was remarkably high. These results determined that my iron levels are off and I am anemic to the point where I will need infusions. This shed a lot of light on how I have been feeling, and the symptoms and pain I am still experiencing from the injuries of my fall. Until I see my PCP in October, I am going to do extensive research on my abnormal results and hopefully find out how this is all related.

The most helpful advice I can give is to research your symptoms, explore potential causes, and look into lab tests that could provide more clarity. Take back control of your health and don't give up!

Wishing you the best of luck …

long covid vaccination makes small fibre polyneuropathie
i suffer the same

Meg, workers comp is not designed to get disability payments to cover all of your disabilities unless you don’t qualify for Medicare. All it’s good for is if you go back to work . Workers comp is a minor disability payment indicating you expect to return to work. You are definitely disabled and need a decent income to survive.
I’m in my 60’s and disabled..
They make disability payments until you reach 65 or whatever it is higher now.

I qualified at 60 and when I reached 65 they dropped my SSDI to regular Social Security. But my disability did not disappear. They don’t cut you of and your plan B is usually your payment and it rises once a year. Right now all I pay is around $175.00 a month and it goes up yearly very little. Direct Deposit you won’t realize the difference in your check because they also raise your monthly payments based on the cost of living. All of this may not pertain to you but I wasn’t at the age of retirement before my disability kicked in.and now I’m 71 and have received disability payments with no employer assistance. Just a thought. Do not transfer to an advantage plan. You don’t need a limit on your payment or an existing pre condition preventing you from qualifying. High monthly payments that rise every year eventually costs to much.

Medicare advantage plans are taking care of shareholders and not you. I collect a monthly payment of $1800 to $2,000 a month.Good luck

good advice!

sorry about your problems. Can report many similar experiences with the medical profession.

Years ago I applied for SSI benefits for my brother who has autism. He was refused. Through the county he was finally examined and got official help and a diagnosis. I applied once again and he received disability and a check in the mail for $30,000 back to when he was first turned down! They do turn you down the first time.

I'm on an advantage plan
I wish I knew when I signed up this was a disadvantage not an advantage for me