Not Diagnosed with MS But Been Dealing with Stuff for 1/4 Century Now

Long complicated story, let me try to simplify as much as I can while covering the basics.

Early 90s when 28 I tore all the muscles on one side of my upper back and ripped the shoulder blade out, called "winging". Took months to heal and was extremely painful the whole time. Soon after it went off again, and I have not been the same since. Took two years before the muscle spasms stopped and I have not slept one real night's sleep since then.

Lots of odd symptoms

Lots of odd symptoms including various paresthesias, dizziness, muscle spasms in other body parts, severe fatigue bouts, etc. Best diagnosis I got was fibromyalgia but was told maybe MS. Workers comp case and the way I was treated was criminal and disgusting and totally uncalled for. Avoided doctors until I was forced to see some again due to cancer. Worked at a nuclear lab for a few years after changing jobs due to the issues from the early 90s. Manual labor was no longer possible, fatigue and severe muscle burn from any repetitive movement of exercise though I did manage to work if the job allowed me to leave to lay down a couple of hours after about 6 working.

If the doctors had just listened to me

Pissing blood all the time, unable to pee, and by the time I got it diagnosed a slew of other symptoms. 8 doctors, one NP, a PA, and I knew it was bladder cancer and it only took five years to get the cancer diagnosed and it almost killed me. A simple urine cytology could have found it if the doctors had listened to me.

Many misdiagnoses

Was misdiagnosed with the dumbest things that testing showed was not correct but they refused to listen to me at all and I was close to dead from kidney failure from the cancer blocking my kidneys. Cost me my bladder and prostate due to the cancer 7 years ago.

Had all my teeth removed to shit doctors up blaming symptoms on bad teeth.

Sleep difficulties worsened along with other symptoms

After all that I was in even worse shape. Sleep was worse. Parathesias terrible. Dizzy spells. Yada yada yada. Forced a sleep test that showed severe mixed sleep apnea. Causes of that are heart congestion (don't have), opioid use (hate them, used sparingly since I've had well over a dozen surgeries), or brain stem damage. Treatment is NOT effective so I sleep poorly and in small spells. In 2015 while fighting this I had tingling in my left hand strongly and my feet and right hand less so and the side of my left thumb felt as if I was wearing a thick leather glove over it. Severe tinnitus in the left ear. Dizziness and vertigo and fatigue spells and muscle spasms lasting minutes to hours and more.

Tinnitus, dizziness, and fatigue

By the end of 2015 it went away but in the 1st month of 2016 the tinnitus came back LOUD. Started getting hour-long spells of burning itch that could be anywhere on my body that was intense and would move to other parts. Severe dizziness. Blurry vision for a few weeks. Tingling in all hands and feet and right side of my mouth and left hand the worst. Sleep really bad. Problems breathing. Severe fatigue a few times a week, the heavy harsh type that makes you feel weak and have no power and like being in quicksand like I have experience for decades only very extreme and way more common.

Repeated UTIs and other infections

Throughout it all I have had repeated serious urinary tract infections, bloody urine, and other infections due to cancer surgery that leaves me prone. Kidney stones I have to have surgically removed as I can't pass them naturally also due to surgery.

Filed for disability

Depression. Brain fog. Headaches unlike the severe migraines I've had all my life. Have not worked since 2012 while I was trying to get the cancer diagnosed after being fired for simply being too sick to work. Filed SSDI and have been back to being treated like a drug addict, mother raper, evil criminal who is trying to take over the world and kill everyone it for being too sick to work and filing for disability.

Have had many tests done

Had tests done including auditory invoked potentials that showed the left ear was slow, eyes that came back normal 8 months after the blurry vision was gone, two brain MRIs on a 3T machine that showed "mild changes" with confluent ventricular and juxtacortical lesions along with what they called micro ischemic changes. I've looked the MRIs and count 23 lesions in the matter in the middle and lesions that have grown together around the ventricals and cortex. Brain stem is lit up and could very well be the cause of severe mixed sleep apnea since I have mostly central apneas. Seen a neurologist that drug tested me right away for over 30 things, all negative of course.

Only a small minority of doctors are good

Worthless is being nice, been through a lot of other doctors and a small minority are good.

Think I have 5 doctors now after ditching two that were problems hurting my health, not helping me. Had another appt. for a different neurologist that was canceled due to the plague. My current GP is not my ally and honestly treats me more like his enemy.

MS is all that's left that fits

Why am I here? See the stories all over the internet on sites for MS and am one of those who seriously suspects that is what I have and I have done long hard and serious research on it, have almost all my medical reports and test results including imaging.

Forget that, I do NOT seriously suspect it is MS.

That is all that is left that fits.

After all, I did diagnose the cancer that 8 doctors, one NP, and a PA failed to and some were urologists and ER doctors who had a CT scan showing the cancer.

I struggle daily physically and mentally

This is only a small part of what I have been through with all this and I struggle daily physically and mentally to get through a day.

The whole medical industry is honestly worthless along with the gov't and I have decades of experience backing that up.
Sorry, that is just a fact.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.