I have a neurological illness that has puzzled doctors.

I was referred to BJC neurological Dept in St. Louis, my pcp sent them over 130 pages of files to review. I called and was told they have to accept me before they can see me, I said I need to see someone Yesterday.. I have been suffering for over 2 1/2 yrs with this whatever it is. You say learn and respect the system, what about them learning to respect the patient.

Was there any blood in your spinal fluid?

To the best of my knowledge of what the doctors told m, there was not any blood in my spinal fluid. The doctors didn't give me a concrete description of the contents of my spinal fluid though. In the near future, I'm going to have another lumbar puncture (& I'll make sure that the doctors give me a detailed account of what they find in my spinal fluid... like I should've done every time they gave me a lumbar puncture).

Thank you so much for giving me a heads up on this issue.🙏

In the future, if doctors find blood in my spinal fluid, do you happen to know what that would indicate?

Hi there. I am in the same situation. I have several issues ie heart and PN among others and cannot get into Mayo at all. Yesterday they told me again that Mayo Arizona is not accepting any more neurology appointments. Before that they said they were not accepting any more cardiac appointments. Have heavy athlerosclerotic calcification in my internal carotid arteries causing symptoms. I had Mayo for my provider before retiring several years ago and had excellent commercial insurance. They accepted me immediately then . I am now on Medicare with Aetna as secondary.

Unfortunately, as I have found out, Medicare has so reduced payments to so many medical providers, for services rendered to elderly patients, in the last few years, that now, some providers are refusing to take Medicare covered patients! Back in my Grandma’s day, that was unheard of. Where she lived, I recall, she was accepted as a patient, on Medicare, with no problems, and Mayo Clinic was one of her providers since she lived near the Minnesota clinic! This is a sad state of affairs, nowadays, for those of us, in our golden years, who thought they could rely on Medicare covering costs, and that they, as patient’s, would be accepted by most medical providers!

I would certainly challenge their decision of not accepting you claiming perhaps that you are an established patient. Contact Medicare and involve them then your State's AG office. I would not take the denial of care without some major push-back! Then again if you are near the West Coast there are several major Medical Centers that have wonderful reputations that you could request referrals!

Thanks for your reply. I guess they would say its not a denial of care, just that they dont have any appointment openings...ever. Had I not had Mayo before I would not be curious. I do know that Medicare does not pay like the commercial insurances, but they should just say that.
I think you are right that the squeaky wheel gets the worm....maybe 🙂 I am going to try your suggestion. Thanks.

I also a very disappointed that Mayo isn’t taking any new neurology patients.
I have been diagnosed with CIDP as far as the many doctors I’ve been to.
I have meant bizarre symptoms including bowel and ladder issues,loss of feeling in my feet and legs, numb lips and some facial numbness, can’t feel if I’ve had a bm , bladder leakage, numbness in my fingers and right hand just to name a few.
This all started 12 yrs ago with my tingling in my toes of both feet.
Had all the testing possible, mris, EMGs, spinal taps,bone marrow aspirations, etc
Had all the neuropathy meds I could along with IVIG infusions.
Nothing helped my symptoms, and MS was ruled out, as was Amyloidosis.
So imagine my frustration when I was told I couldn’t see anyone at Mayo in Arizona.
Very frustrating because my quality of life has gotten worse, can’t walk without cane or walker, my balance is awful and I can’t feel my feet.

I was found to have 4x the protein in my spinal fluid.
What’s that mean exactly?
Never got a straight answer from any of the 7 or 8 neurologists I went.

@carniplant Don't get your hopes up too much! If numerous other neurologists have been unable to provide you with a diagnosis maybe they cannot. Medical science is not exact. These docs are smart but our human bodies are still a mystery to them. Maybe consider addressing your symptoms and accept that. Ask any medical provider whether they have all the answers and you’ll find out. I don’t mean to dampen your issues but your expectations may not be met.