Testing for Neuropathy

Posted by klro0001 @klro0001, Jan 17, 2020

Greetings, everyone. I hope this new year is going as well as can be for all of you. I was wondering if a few of you wouldn’t mind sharing your experience with getting tested for neuropathy. I went to a neurology appointment on yesterday and requested blood tests and a skin punch biopsy. I was told that I had to undergo 3 MRIs first and they refuse to act on my request before this is taken care of. Did any of you have to do MRIs before blood tests? I would appreciate any insight or feedback that you guys have. Thanks so much for your support and your time.

Can you share what type of MRI? Brain? Spinal? It seems reasonable to undertake brain and spinal MRIs.

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Brain, spinal and one more that I can’t remember right now.

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@artscaping

Hi @kiro0001, you requested some feedback about the neuropathy test procedures that we have experienced personally. So, here you go:
1. EMG and nerve conduction.
2. Blood tests
3. MRI
4. Auto-immune tests
5. Skin punch biopsy
6. Neuropsychological tests

I do think that my neurologist was most interested in getting the MRI done before the medication could be prescribed. Because the dosages are graduated, he didn't want to start on something until all the results were in. He did give in on gabapentin…..my pain level was too high not to get some relief going. What has your sequence been, how was it different? Have a day free of suffering. Chris

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@artscaping

Thank you for sharing your experience. So far, I’ve only had EMG and NCS. The NCS showed damage in my left leg. I haven’t gotten past this point yet. I’m not in pain, so I don’t think the PA took me very seriously. In fact, she said, “You definitely don’t have neuropathy because your symptoms aren’t in your feet and you’re not burning.” I know from my own research and speaking with all of you that neuropathy doesn’t follow any rule book. What type of MRI did your doctor order, Chris?

Kia

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@klro0001

Brain, spinal and one more that I can’t remember right now.

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I'm late to the conversation but do you have a diagnosis of neuropathy?

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@kiro0001….My neurologist wanted an MRI of my brain. He showed me that there was nothing indicating more than the brain of a 70-year-old who had taken a few tumbles and undergone some surgeries. Do you know why certain tests are mandatory? Chris

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@artscaping

@kiro0001….My neurologist wanted an MRI of my brain. He showed me that there was nothing indicating more than the brain of a 70-year-old who had taken a few tumbles and undergone some surgeries. Do you know why certain tests are mandatory? Chris

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@artscaping

I am so glad you asked that question. And the answer is a resounding no. I was told it’s “medically necessary” to rule out MS first. 🤷🏾‍♀️ All of the answers to my questions were either extremely vague or over generalizations. Thanks again for asking.

Kia

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@beth11

I'm late to the conversation but do you have a diagnosis of neuropathy?

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@beth777

No, I don’t. I was just told that I have nerve damage in my left leg based on a NCS. However, I want to be tested for neuropathy. It’s frustrating to be tested for MS without giving an explanation as to why that’s a concern and even more frustrating to be told that he won’t test for neuropathy because I don’t have symptoms in my feet. Thanks for inquiring.

Kia

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Hi Kia

I had brain and cervical MRI's, EMG and NCS all prior to skin punch biopsy but not be design. Basically it was trouble shooting with my PCP and spine Drs before I saw a neurologist and the thought of neuropathy came in to play. Hard to say whether this would have been the path by my neurologist, leading to skin biopsy but, after that test I moved on to all the blood work, genetic testing and spinal tap.

At the end of the day, you're the patient, you pay for the services and you have to follow your gut.

Good luck with you decision and please keep us posted.
Rachel

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Kia – the fact that you had a NCS and it showed damage really makes MS less likely. From everything I have been told, people with MS usually have a normal EMG/NCS because the damage is in the brain and spine and their ability to communicate to the nerves. If you have documented damage in your leg, they really should be looking at peripheral nervous system problems, not central nervous system problems. Definitely find a second opinion.

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I’ve never had an MRI related to my neuropathy. I have CIDP and was told nothing having to do with my disease would show up on an MRI. I was diagnosed via a markedly abnormal EMG and nerve conduction study.

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@klro0001

@lorirenee1

Thanks so much for inquiring, Lori. I hope you are still doing better. I’m fine, physically. I’m just extremely discouraged and annoyed. Before this, I never had bad experiences with finding doctors that listened to me, stayed in my corner. And came up with a game plan that we both could agreed with. The PA said that their clinic’s first step is always to rule out MS so the 3 MRIs are “medically necessary.” The scans would take more than two hours so I would need to book them over two appointments (and the two appointments are over a 4 week period). Also, When asked what the next step would be if my MRIs were clean, I was told, “Let’s just cross that bridge when we get to it.” Something about this didn’t sit well with me. And this clinic has their own MRI machines so a small part of me thinks they may be more motivated by money than patient care. And I don’t want to be just a number to someone treating me. Sorry for the rant. I will put my big girl pants on and keep searching.

Kia

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kiro0001 Hi Kia, I really would go to other doc if I were you. What you are going through just does not seem right, and I agree that it may be motivated by making money. Horrible. Find another doctor, for sure. Keep us all informed. Lori

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