This blog takes you through a misdiagnosed and my being diagnosed with Primary Progressive Multiple Sclerosis, but the first mis diagnosis was Chronic Regional Pain Syndrome.
Just to talk about mine, and what works with me, probably will not work with others because of their DNA make up of genes, and other factors.
I was going to put lots of links to what was going on, but figured you, as a reader, or scientist, could follow, or look up.
A regiment I have been on for over eight years, which keeps me going, of twenty four medicines right now, with a Correct Diagnosis. But this was not The case at the beggining, when they were trying to figure out what was happening.
The first part was during diagnosing me. They diagnosed me with CRYPS, chronically regional pain syndrome... which is not much better than being diagnosed with Multiple Sclerosis
The Mis Diagnosis was for about a year and a half.
I remember Dr Quack, as I would call him, told me something is wrong with you, but the insurance (from A large corporation working for, self insured) would not let him run any tests. My hands were doughy, feeling, sweaty, but calmy. These were almost frozen in a grasp position. My pain would cross over from one leg, thru both arms and down (or up) from the other leg and hands.
I could not different which way The pain was traveling, but the Dr said impossibe.
The Dr tried me On 0.2 MG of clonidine. This is a heart medicine, but also a old MS medicine. This gave relief to my hands. He had me go to a 0.3 MG tablet, and back down to a 0.2 MG tablet to find differences. This took months, to see the difference. A 0.2 MG was decided on in 2010, with a lot of unknowns with the cryps diagnostic.
He had my blood pressure checked sitting, standing, lying down. This still may be of help to future scientists, as these were far off on readings. My current heart Dr encounters it to multiple sclerosis, as, like I am always running a marathon, even though my body is sitting.
The clonidine was increased to a 0.3 in 2019 to again help the claw fingers from continuing.
Tramadol for pain was tried, with horrific effects, causing no urination.
Soma was tried, as a muscle relaxer. It Wired me, instead of relaxing muscles. Allergic reactions to both.
indomethacin was given for pain. It burned a hole in my stomach to this date. The ibuprofen was used for pain and inflamation. Another nasid that wrecks your stomach. But does help in given circumstances.
A CRYPS diagnosis was given. Chronically Regional Pain Syndrome. Not A good diagnoisis.
The only neurologist in the area did test on both wrist, only after the hospital emergency room splintered both wrist, As carpal tunnel syndrome, and to follow up with local neurologist.
The only Neurologist, wanted to prove the hospital wrong, stating There was nothing wrong, doing his own tests to tell the insurance nothing was nothing wrong. This included false records, by ice being put on wrist, to get readings he wanted. He needed to keep company "A" satisfied.
his office tried to send me to a private MRI, at My expense, which was not a option.
But the worst Drs were to come, that were required to see, as because it happened at work, I was forced to their workman compensation insurance program, required to see their doctors.
The company was large enough to be self insured, and had the state insurance commissioner, actually working for them. Yes a conflict of interest.
I was sent to one dr , who wrote a 50 page report, on how I ran to the room, which was three feet from me, had me doing all these items, which never happened, of arm movents, weights, calisthenics, while interviewing me for 20 minutes. The actual visit lasted less than three minutes with this Dr, and none of that happened. A quack, making money from the insurance company to say NO to everybody that came in.
A neurosurgeon was seen, and she stated you don't even have a physical done yet. Why is this big company's insurance sending you to me, except that I don't know if anything is wrong. Perhaps 45 seconds of her time, wasted, except for a long report to say nothing was wrong she could see, as that was what she was paid to do. You can not diagnosis a patient that a physical was never done.
this went back and forth, and thus perhaps the crops diagnosiis, as something was definitely wrong.
As soon as able I went to my local dr.
He was able to do a little more testing. Sometimes knowing the the insurance company needed a test, but you had to say you were deficient. A shot of vitamin B injected, then going over to give a blood sample to see where you are at. Quite backwards. It showed a high vitamin B on the test. Testosterone was the same way, except I was quite low on the return test, that's when testosterone therapy started for hypergandlosim I injections continue to this date with testosterone injection.
He ordered MRI of each section of the back and neck. These approvals took a long time to get, one at a Time. So we are talking some long period of time. This is before I knew the magnet source was Not a very strong magnet.
Gabbapentin was added for nerve pain for the legs. Then
A pain Dr was seen, as my GP was limited what he could do
The pain Dr was added. She prescribed something to get rid of pain.
Opioids, then enough morphine that the pharmacist asked me if I was picking it up for someone near death to control the pain. The opioid plugged me up, so generlac was added, to help by my GP
The Brain was the last to get a MRI done. In the report, in bold NO MS. All the mri's, the film is read by one person. Perhaps not quite knowing everything to be nice.
My GP, said they did not go far enough, as I found out years later, he suspected Multiple Sclerosis, not CRYPS.
He sent me to a Neurologist in the city.
Same mri, film, and much more tests, including new neurologist doing wrist, showing me to have cararple tunnel both wrist, as he was not working for company "A", but independent, and knew His stuff.
Then a spinal tap he did. A quite well known known neurologist, who knew how to do this, being in his 70s. Spinal tap done by him in his office. He ruled out everything else, blood diseases,and other diseases.
I had onoglycolic bands were in my spinal fluid ( pieces of the mylen coating I would call them).
The MRI film, if knowing what to look , showed a bright lesion and past few lesions could be seen. Looking back, I probably could tell you even the year, date and circumstances.
He did show me the criteria needed, and the three spots, and old spots. Once you knew, you could easily find them.
A diagnosis, I was ready for, learning all and everything I could by research and asking Doctors. Primary Progressive Multiple Sclerosis, with degenerative disk disease.
I was titrated off all opioid and morphine from the pain doctor.
Lyrica and Cymbalta are used in pain for MS. You can not tell the insurance company, or they Would deny the combination.
Lyrica was added, as it works on different receptors than gabapentin, which was also increased, as the nerve pain.
The real name brand cymbalta improved my mood, which I did not realize was in the dumps for months. A positive I had not realized.
Nortriptyline was added, titrated up. For nerve pain at night.
Ibbufferin was added for chostocrondrtis, as the only thing that works, I should of asked wils dad Bruce, who was stricken with a bad case of rhemutoid arthritis, who knew what worked. He was my partners dad, filled with info, and a great outlook, even though bed ridden. He passed away a few years ago, as I write this in 2020.
Omeprozole was added to help the stomach. In latter years ranitidine also added. This medicine was recalled, and tamodine replaced this in 2020
A lot has happened since the mid disgnosisis.
I had GPs at the Indian clinic, as they were The only game in town taking my insurance. Some Great. doctors, and some worst Drs, that I actually went back to my old GP, who had sent me to the out of town neurologist.
He changed his staff overnight, and the new staff did not follow thru, so back to the clinic.
This provides me with a excellent GO Dr. He could tell I did not have a torn rotator cuff, as another quack Dr said.
The university wanted to put a metal plate to hold up my neck. Invasive major surgery. When getting ok from my other drs, my GO stepped up and I listened to him. I asked the surgeon, how much pain was caused by ms, and how much was caused my MS. They all left the room, and surgery never done. Best decision made. My Neurologist, against it, put me on Hyaluronic acid and chondroitin sulfate. That, along with botox to relieve muscle spasms worked. More on that in future blog...
it took a year and a half, which I find is fast fire someone with Multiple Sclerosis.
I was glad to be off opioids, and morphine. I
Currently I am maxed out on medicines I can take. I see 8 or so specialist at the university.
The only thing they can offer now is low dose naltraxadone. I am looking On input from others, and On anyone that has done this treatment, or Chinese acupuncture.
I was off botox since August 2019, due to go my neurologist taking a leave of absence. I wrote him and the state a letter, showing how many people they hurt.
six months to get another Botox specialist. Ona from us davis, the head professor. Names of muscles rolled off his young as he used a needle guidance machine to inject into both calves and neck.
This reduced the pain level, as the neck was pulling in bulging discs against the nerves. This has helped tremendously.
I think back of the mis diagnoisis, and where it would of led.
perhaps to the same point now, and different medicines used? Or the
quality of life being non exsistent. The plate in my neck would of never happened, as once they tried, they may of uncovered the H63d gene, causing Iron overload, no place to screw the plates to, and no healing, due to ME and the autoimmunity that goes with it.
can low dose naltraxodone help or make me worse?
Would love your stories of his diagnoses of anything.
cheers
JoeY
