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Turned Down by Neuros--Why?

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Old 05-13-2018, 08:31 PM   #1
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Default Turned Down by Neuros--Why?

Maybe someone can give me a clue as to why I'm being turned away. I am 67, female, with several autoimmune challenges.

I have been diagnosed with idiopathic neuropathy. A nerve conduction study showed damage in both arms and both legs. The neurologist became upset with me when my naturopath sent her a note asking for a brain scan to rule out MS.

She raised her voice and told me she did not want a naturopath "butting in" and that I definitely do not have MS. She said that I have severe spinal cord degeneration throughout my spine. I looked over my spine MRI reports but they do not mention spinal cord degeneration. I asked a rheumatologist and my PCP to review the same records and they also did not see such evidence.

I have since developed scary muscle spasms in my thoracic muscles and hands. I've had them in my feet and legs all along, which the first neurologist originally attributed to disc problems in the lower spine. I had a series of steroid shots and am not sure they helped. I asked my PCP for a referral to get a second opinion.

My PCP referred me to a second neurologist who reviewed my records and (after four months of waiting) said he was unable to see any reason to see me. I was then referred to a large neurology institute. I got a call from them saying that a couple doctors had reviewed my records and unfortunately they were unable to meet my needs. It is impossible to get through their phone system to speak to the person who called so I have not idea what made them turn me down.

I have not made any requests or demands from these additional doctors. Does anyone have any idea of why I am being turned down and what I should do next? I am having a lot of worsening symptoms and still don't know what the cause of my overall neuropathy is. I did find out through my naturopath that I have elevated lead in my system but have not yet had a chance to mention that to my PCP and it was not in the records these other neurologists looked at. Thank you. I am stymied.
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Old 05-14-2018, 07:38 AM   #2
Join Date: Feb 2011
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Have you seen and read the records that were sent to these other neurologists?
ALL of them?

I was getting turned down by home health care agencies, who would talk to me on the phone and assure me they could help, but then suddenly change to "no, we can't do anything" after talking to the original agency who had sent someone else out once. Every single one.

Turns out, the first physical therapist who came out for that evaluation (who both I and my husband said, "she's nuts or on drugs" as soon as she walked out the door) was indeed nuts or on drugs. She wrote that I was able to get dressed and walk and feed myself and everything without help. She wrote that I had gone out to my car by myself twice already (no, my car was squished beyond recognition in the accident. There was no longer any car to go out to.) It would take my husband and I until noon to get us both washed and dressed, as he had been injured also, but me much worse. We were eating food that volunteers were bringing, already cooked, to the house, on paper plates to avoid having to wash anything, as he had one arm in a cast, and a severe concussion, and I had broken shoulder, ribs, pelvis, as well as about 50% of my body covered with massive, still black bruises.
We didn't find out what she had written until a couple years later when we saw the records for the lawsuit against the guy who hit us. Sure wish I had known to look into them at the time. That horrid woman blew all help for us when we desperately needed it.

But, one incorrect statement, or a condemning comment from your first doctor, could be blowing your chances with the other doctors. You need to find out what is being sent to them. Doctors (and other medical professionals) make mistakes. They mix up records. (This happens at an alarmingly high rate. I was shocked at how often when I was reviewing my records, and how many mis-diagnoses were there, because they were looking at someone else's information.) And, they say things they really shouldn't, because they don't think they will get caught.
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gnnmi (05-14-2018), Jo*mar (05-14-2018)
Old 05-14-2018, 10:17 AM   #3
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My Mood: Turned Down by Neuros--Why?

I was thinking the same thing, getting copies of those drs office records/notes, even if only a typo or word left out can make a big difference ..
But they make mistakes so best to go over them and see what is in those. And get it corrected if facts are wrong..

It may cost a per page fee if printed out, unless it is digital office records and can be emailed, or on a cd or flash drive ..
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says:
gnnmi (05-14-2018)

naturopath, neurologist, pcp, records, spine

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