Neuromuscular In memory of Rose Marie.


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Old 05-13-2018, 08:31 PM #1
gnnmi gnnmi is offline
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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
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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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Old 05-14-2018, 10:17 AM #3
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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 ..
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Old 04-10-2020, 10:16 PM #4
what a ride what a ride is offline
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You are not alone, I thought I was the only one. In 6 years i have not had an appointment with a neurologist that was not cancelled after they found out my issues started with Lyrica. I have tried in 8 western states with no luck and am beginning to think it might be a blessing. I have never heard one good comment in any support group I have gone to about their neurologist, just complaints.
Bad doctors yah. When I quit taking Lyrica due to the fact it became toxic to me and made my thinking really weird. So due to the toxicity I had to do a cold turkey on Lyrica and ended up in the ER ( I also have graves an autoimmune disorder.) It was in the ER that I found out that a Dr Kelly who I saw less than 3 minutes before walking out on the idiot, for calling me a synthroid junkie and reported me as a synthroid junkie! He could not properly read a blood test and had no clue about Graves. So I got flagged as a drug addict. BTW too much synthroid will kill and kill quickly but that fact was way over his head. . The whole ER experience was like the Twilight Zone as one doctor after another came and gave me a lecture from WEBMD about graves and every doctor was WRONG!!! Yes I was having a thyroid storm which can happen when the body goes into shock so I quit taking my synthroid 5 weeks earlier. But the 5 idiots ER doctors told me I was a synthroid junkie because according to them my thyroid was not able to produce T4, again totally wrong, and the only way my levels would be so high is if i was abusing my meds. Sorry for going so long even after 6 years I get still get very mad about the ER visit. I had to get a lawyer so I could make a comment about his miss diagonios in my record.

Last edited by what a ride; 04-10-2020 at 10:36 PM.
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Old 04-11-2020, 01:07 PM #5
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Hi what a ride,

The person who started this thread seems not to have returned in the last couple of years, and I am not knowledgeable about Lyrica, but it's too bad you've had such bad luck with neurologists.

I've had MS since the late 1970s (diagnosed in 1980) and have been to quite a few neuros over the years. I myself am on neuro #5 or 6 but was also sent to a few others by Social Security in connection with filing for SSDI disability benefits.

I ran into several arrogant, dismissive and uninformed neuros but I've also had several who were adequate. Some may be in it for the money--neurologists are among the more highly paid doctors, I think--and some are definitely too cozy with the drug companies but there are those who are doing a conscientious job and who take the time needed to get to know their patients.

Hope you won't give up on them.
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Old 10-11-2020, 12:28 PM #6
Razorbackfan Razorbackfan is offline
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Default Makes me appreciate

Wow I know this is an old thread, it really makes me appreciate my neurologist. Now I have only seen him two times, but he is the only doctor that has taken my complaints of sudden neuropathy pain seriously. Immediately ordered some labs that he needed and is going to get me set up to have the EMG and the CNS test done. He even went ahead and gave me a script for medicine to help ease the pain. He listens to me and really seems to want to help. So far I have nothing but trust for him. Now my other doctors not so much. If something is found I will definantely have him send the reports to the doctors I have seen over the year telling me it was overuse pain. I hope I can keep this neuro for a long time. It is hard finding a good doctor that wants to invest in you just as much as you want to invest in them.
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