At a loss, multiple consultations still no answer...any idea?

I have persistent and worsening pins, needles, numbness, paralysis in all parts of my body, including my face and it's worsened over past 1.5 years.

Had MRI on neck two years ago and it showed cervical stenosis and calcification and narrowing of spinal fluid canals on both sides of vertebrae with myelopathy.

Since then my feet, calves, hands, arms, mid back, belly and lower face go numb. Pins, needles. Etc

My insurance company BCBS has denied three times for MRI of spine or brain. They state I need to go through PT first on my back before MRI is approved.

That seems backwards to me. Why would you to PT on the spine when you have no x-rays to show possible spinal cord impingement etc??

I am at a loss. Could Mylopathy of my neck with stenosis and narrowing of spinal fluid in neck cause all these symptoms etc?

All specialist are at a loss. I've had tons of tests and blood work but never MRI on back.

I'm new to this forum but I just wanted you to know that I was asked if I HAD all the symptoms that you are having. I had no symptoms at all. I had an MRI of my head and neck for an unrelated problem. The next day my neurologist called to tell me that she had already made an appt for me the next day with a neurosurgeon. My third consult was at Vanderbilt Univ. When the neurosurgeon put my MRI on the screen I easily pointed to my problem. I had severe cervical stenosis and myelopathy but had no symptoms. Without any treatment I would eventually be paralyzed from the neck down. It was just a matter of time and/or injury, such as a MVA or fall. I had a laminectomy with hardware (2 rods and 8 screws) of C 3-6. I was very lucky that my problem was found before something catastrophic happened. You must appeal BC/BS until you get your MRI. You have all the symptoms that I should have had. Good luck and I hope you get a diagnosis. Chris

It turns out I was wrong. I contacted the hospital that conducted the test, they have the report but can't release the information as it has to be done by the neurologist that requested the test.

The reason for the delay is that an abnormality was found but the neurologist who requested the test doesn't deal with that issue so I've been refferd to someone else.

Sometimes GP's are sent a copy with a brief summary so hopefully that's the case as I really don't think I can endure waiting 7 weeks.

Hi @change25 , I can't stand waiting, especially for a mystery abnormality!
I would contact someone, one of them, and plead my case!
It seems cruel to say there's an abnormality and then make you wait!

Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.

I do not know why my two neurologists have not said much about the MRI I did have on my cervical spine and even the neuro surgeon who reviewed the MRI said surgery would be last option and I should do PT on the neck first and if I get to a point I feel symptoms are something I'm not willing to live with then he would discuss surgery. This Neuro surgeon on Augusta GA felt surgery is last option if PT on neck does not work.
So I start PT on neck next week.

So discouraging and scary to see so many different type doctors either NOT be concerned or this Neuro surgeon felt surgery is final option.

Absolutely, I appreciate that there's protocols in place and an ongoing backlog but is seems unnecessary and cruel to wait that long. I'll definitely pursue it, I no longer care in fairness.

Yes, remember the “squeaky wheel gets the grease.” One of my mottoes!

Absolutely, I appreciate that there's protocols in place and an ongoing backlog but is seems unnecessary and cruel to wait that long. I'll definitely pursue it, I no longer care in fairness.

You can have Sjogren’s and may not be positive on the blood work. As @helennicola noted there are various tests for Sjogren’s and many systemic symptoms. My Sjogren’s first manifested extraglandular…tremors, peripheral neuropathy in all extremities, and moderate to severe muscle and joint pain.

Hopefully blood labs can rule out what you don’t have. Keep pursuing answers, more labs, tests, and request referrals to different doctors if you’re not satisfied . I’m still searching for a competent rheumatologist who will provide treatment. I do have a good neurologist.

If you’re interested, here’s two excellent websites I’ve found helpful:
https://www.smartpatients.com/
https://www.sjogrensadvocate.com/
Best wishes on finding answers and solutions!