Living with Neuropathy - Welcome to the group

@steeldove, I hope the spinal cord stimulator works for you if you choose that route. It is a choice we all have to make when faced with the reality that neuropathy has no cure unless of course it's caused by nerve damage or compression that can be fixed by surgery (IMHO). So the doctors/neurologists treat the pain symptoms with drugs that basically tell the brain to ignore the nerve signals coming from the damaged nerves. I may be over simplifying it and it's just my non medical opinion but I haven't found any evidence to change my mind. Because I only have numbness I chose the supplements route to try and provide the cellular nutrition the nerves need to heal and possibly get back to normal. There are a lot of unknowns no matter what choices we make which is why it's really great that we can share patient experiences and learn from each other.

What kind of concerns do you have about having the SCS implanted?

@specialty555, I would like to add my welcome to Connect along with @erikas, @jesfactsmon and other members. Do your doctors think that the adrenal insufficiency may be related to your polyneuropathy symptoms? Here's a few articles with information about the conditions.

POEMS syndrome: a rare cause of adrenal insufficiency in a young male:
- https://edm.bioscientifica.com/view/journals/edm/2019/1/EDM19-0010.xml

POEMS: An expertise in the rare leads to a rare opportunity: https://connect.mayoclinic.org/page/hematology/newsfeed-post/poems-an-expertise-in-the-rare-leads-to-a-rare-opportunity/

@phoenix0509
Hi David, I know you wanted to get in to see doctors at Johns Hopkins (you posted back in early Sept. in another discussion, here: https://connect.mayoclinic.org/discussion/eyes-and-neuropathy/?pg=16#comment-425970 ). Did you get a chance chance to go? Before you knew whether you'd get in you mentioned that you wanted to go for what you referred to as "widespread radiculopathy like pain". Can you give me (us) an update on how you are doing and what has happened since that post? Thanks and best to you, Hank

@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

@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

@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

Hello @specialty555 and a very warm welcome to Connect blog! I am confident you will find wonderful support, encouragement, information and inspiration here as all of us have n some capacity.

I am heavy-hearted to hear about your pain and journey and hope that it will help you to know that others here can relate to your experience unlike others who can not. That alone means the world to me, that for the first time ever I found people who were experiencing the same pain/suffering and experiences as myself. I had longed for someone in my life to really get it but until I joined this blog, there was no one.

Feel free to ask questions and don't worry if you get behind and aren't able to respond right away. We all understand that!

I have small fiber peripheral neuropathy (SFPN) pretty much from head to toe. I burn/sting terribly and have numbness all over as well. I also have some neurogenic organ dysfunction as well as diseases in most of my organs and body, and a few glands.

My pain, circumstances, pain and day to day living is often intolerable. What gets me through is my intimate relationship with God and His ever-presence, comfort and peace through Christ which surpasses human understanding.

I will be praying for the same for you and that you will have some relief!

Warmest wishes, Sunnyflower. 😊.
@lorirenee1.@jesfactsmon @maryv449. @johnbishop

Thanks for posting that link John, I just learned a lot about SFN that I didn’t know! What I don’t get is why with all this available information hasn’t yet led to the discovery of a helpful drug. Helen

@johnbishop , John. Thanks for the research. Best, David

Is there no where on this website to post a new list for a new member that has a question? All I see are “reply”