Comparing Symptoms REQUIRES Identical Diagnoses!

Posted by linuxusr @linuxusr, May 5 10:39am

P.N. has distinct sub-diagnoses with different types of symptoms presenting. Further, there is always the question of individual differences between those with the same diagnosis. As I read posts in this thread, I see that sometimes precise diagnoses are not stated. That means that when members compare symptoms, they may be comparing apples and oranges, and I'm not sure how useful that is. I think that if your diagnosis is known, it should be stated, formally, as in the EMG report. There still might be individual differences but at least that would be a comparison between varieties of apples and not apples and oranges.

My diagnosis is: Abnormal electrodiagnostic study, due to the previously described findings which are indicative of a severe mixed (Sensory-Motor) axonal type polyneuropathy affecting the lower limbs. Now, I received that explanation in Spanish, my second language. The 15 page EMG report is extensive. Hopefully I will at some time be able to flesh out further characterizations.

Side note: It is now affecting the lower limbs only, right leg predominant, but because the dianosis is "poly"--multiple peripheral nerves--it will extend to all limbs, including hands and arms.

I discussed fears regarding possibilities with my neurologist. On the positive side, she said that, with respect to my diagnosis, my P.N. -- 1. will not affect my optical nerve (I am blind in one eye), 2. will not affect my ability to swallow, 3. will not affect major organs. On the negative side, over time, I can expect: 1. progression from my feet and legs to my hands and arms, 2. pain, 3. I will lose my ability to walk at some point but short of requiring a wheelchair.

I would like other members, if you have the same diagnosis, to introduce yourself, so that we can compare notes, hopefully, between apple varieties and not apples and oranges. I think that with that kind of focus, discussion will be more useful. And ditto for everyone else. I think that, if known, you should state your formal diagnosis.

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | May 5 1:20pm

@linuxusr, I'm not a medical expert but just a patient with neuropathy like yourself. I've had the progression discussion many times with different primary care doctors since I first noticed the symptoms in my toes on both feet. It started in my late 40s and due to progression and feeling numbness a little above my ankles in 2016, I decided I needed to get a diagnosis and saw a Mayo neurologist. I was diagnosed with idiopathic small fiber peripheral neuropathy and am fortunate to be among the 20% or so of folks with PN and only numbness and some minor tingling for symptoms. It is great to see that you are doing your own research to learn as much as you can about the condition and what treatments might provide relief. If you haven't already seen these sites, you might find them a great resource for learning more about neuropathy. I posted my neuropathy journey along with other members here - https://connect.mayoclinic.org/comment/310341/.

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy YouTube Channel: https://www.youtube.com/@foundationforperipheralneu4122/videos
-- And my favorite - Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin - Introduction to Neurology (short videos): https://www.youtube.com/@MatthewBJensen

I'm not sure I agree with your assessment of neuropathy as apples and oranges, as both are fruits just as there are many types of neuropathy but it's a way of looking at the problem and nothing wrong with that. I think symptoms cross a lot of boundaries when it comes to neuropathy. Here are a couple videos from my favorite above that do a good job of explaining the complexity in layman's terms.
-- Approach to neurological syndromes: