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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 5 days ago | Replies (6026)Comment receiving replies
@jesfactsmon , Hank, thanks for our interest and keeping me accountable. I have made 2 trips to Johns Hopkins so far . On my second trip the EMG/NCS was done and discovered generalized Polyneuropathy, both sensory and motor, and axonal in type as I recall. I have been referred to Neurology for further work-up to uncover the cause, I see neurology on November 16th. Interestingly, I have had to go "off campus" for Neurology as Johns Hopkins is apparently in such demand or their screening to get into them maybe so tight that patients are having to wait excessive times and I was advised to go with Greatre Baltimore Neurology Group and I was able to get an appointment in a matter of weeks. Also looked at was the previous spinal surgeries, they appear to be doing fine. Of interest is Thoracic epidural lipomatosis, with mild compression of the thecal sac from t5-t9 as I recall. I am in a great deal of pain. It appears as though i do not have polymyalgia Rheumatica and need to re-visit that with neurology on Nov.16th. Lots going on with me. I am maxed out. I would like to ask John @johnbishop for his expertise in hitting upon the most common casues of Plyneuropathy, sensori-motor-axonal type and also if thoracic myelopathy or stenosis is a cause? That's it for now, that's enough !! yuck.. David
Replies to "@jesfactsmon , Hank, thanks for our interest and keeping me accountable. I have made 2 trips..."
@phoenix0509 - I have no experience or knowledge of polyneuropathy, sensorimotor axonal polyneuropathy or the other symptoms other that what I've found in different articles. I did a quick search and found something but not sure how helpful it is. Here's an excerpt from the article below.
"Diabetes, HIV infection and alcoholism can cause several patterns of neuropathy. They most commonly cause a distal, symmetric axonal sensorimotor neuropathy. The second most common presentation in these conditions is a small-fiber, painful neuropathy.Feb 15, 1998"
An Algorithm for the Evaluation of Peripheral Neuropathy: https://www.aafp.org/afp/1998/0215/p755.html
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@phoenix0509
Yuck is right! Hopefully John @johnbishop will answer your questions. People like you are way above my pay grade, illness-wise. You, like a few others here would challenge Doctor House's diagnostic abilities (old tv show reference - nevermind if you didn't watch it). But seriously, I am so sorry to hear of the pain being caused you by the thoracic epidural lipomatosis. Have you been getting steroid injections for it? So awful, the pain, as you describe it.
So they actually said that they can do a "work up" that will determine the cause of your polyneuropathy? Did not know that was possible. Wonder how they do that? Please fill me in after you're back from your appt. Glad you were able to get in so soon, clever of you to book into that other neurology group. Well hope your investigations prove fruitful. Always great to hear from you my friend! You are and will always be, in my thoughts and prayers.
Best, Hank