Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
Interested in more discussions like this? Go to the Neuropathy Support Group.
Because I have both Peripheral Neuropathy and spinal degeneration I'm experiencing symptoms that overlap. Currently I would like to know if anyone can comment on my PN symptoms in such a way that might help me decide if they're the PN or the Lumbar issues.
Bilateral numbness in my feet and a little going up the legs seems very PN to me. What seems not PN is that when I wake up first thing in the AM my PN is such that I have little problems walking around doing small activities like making breakfast etc.. HOWEVER, once I engage in more actions or am just standing or sitting for any length of time my symptoms get wildly aggravated. I go from feeling just slightly delicate to feeling dangerously numb, in pain and weakened. I get lots of clicking at the lumber where the issues are and bits of pain generated from there. Can anyone speak to the symptoms of PN and if this is mostly PN or do some of these symptoms seem separate from PN?
@darrenp Spine issues and pain symptoms can change because of movement in the spine that changes the amount of pressure on the spine itself. If there is already an issue there, you may be adding more or less pressure with your body position changes. When vertebrae are slipping, they may slip into alignment with one position, and slip out of alignment in another. That is certainly a clue to tell your doctor. Another thing is that the spinal cord floats in fluid within the spinal canal, and it has to shift back and forth as you bend your spine. If there is compression or tethering, it can stretch the spinal cord while compressing it when you bend. Clicking in the spine is likely the facet joints. They will get more pressure on them if you have a collapsing disc. The discs carry about 80% of the weight and the facet joints about 20%. Facet joints allow the twisting movement in the spine. Please check my response to you in your post in the Spine group. Here is the link to that post. https://connect.mayoclinic.org/comment/1199130/
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I have been diagnosed with IgM MGUS and neuropathy in both feet started 1 year ago and has progressed to include my lower calves. ECS and EMG tests reveal sensory neuropathy.
I’ve been to 2 neurologists
. 1st one did the ECS and EMG tests and said he could do no more and said i should seek another neurologist. 2nd Dr. ordered
Paraneoplastic blood test.
Will this blood test diagnose DADS-M which i think is the cause?
Hello @3charlie, Welcome to Connect. There is some information on the test but I'm not sure it will answer your question specifically.
-- Paraneoplastic syndromes of the nervous system: https://www.mayoclinic.org/diseases-conditions/paraneoplastic-syndromes/diagnosis-treatment/drc-20355691
Since you mentioned IgM and neuropathy, you might find it helpful to scan through the other discussions on IgM and neuropathy. Here's a link that lists the discussions and comments from members - https://connect.mayoclinic.org/search/?search=Igm+neuropathy.
Are you able to ask your doctor specifically what he is looking for in the results of the Paraneoplastic blood test?
I don’t know how to start a discussion about burning mouth syndrome. I guess that is a form of neuropathy. Two years going on 3 years with this ailment. Trying to find answers. How does a healthy man wake up one morning with a metal taste in my mouth leaving me with limited taste and a stinging, burning tongue. So now I isolate myself because every event has to do with eating and drinking. Along with this anxiety, depression follows me. I have been to many doctors and specialists to find some answers and they have no idea what is causing this.
@sparta71, There are quite a few discussions on burning mouth syndrome. Here's a search link that shows the discussions - https://connect.mayoclinic.org/search/discussions/?search=burning%20mouth%20syndrome.
Check out the Help Center for more information including how to start a new discussion - https://connect.mayoclinic.org/help-center/.
Many thanks.
Hi I have feet pain and tingling sensations since 2 years and have seen many doctors. they cannot help me . they give me gabapentin which made me depressed and slow. they also prescribed lyrica and cymbalta.
I hace labile hypertension since 3 years and taking losartan. I was wondering if my neuropathy is caused from losartan
thanks
Hello @fani6, Welcome to Connect. According to the information Mayo Clinic has on losartan, "burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings" is listed as one of the less common side effects and you should check with your doctor if it occurs. See the side effects section of this article - https://www.mayoclinic.org/drugs-supplements/losartan-oral-route/description/drg-20067341.
It sounds like your doctors are treating the symptoms with the normal drugs which also have side effects that you mentioned made you depressed and slow. If you haven't seen a neurologist, it might be helpful to setup an appointment to discuss alternatives. Have you talked to your doctor about the losartan and possible alternatives?