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  • heyjose
    I had an interesting interaction with my neuro the other day, which has led to other questions.  I will ask him when I go back in a week.  I wanted to pass it by you smart people to see if I can glean any insight before asking the doc.  I have numbness in my face, hands and from about mid torso down to my feet.  A while back, I had a short bout where my feet at the base of my toes would start burning.  I figured this was just the nerves waking back up, since I hadn't been daignosed yet.  I was wrong.  They are still numb.  Recently, this burning has become more frequent.  I brought this up to my doc, not wanting any meds, just to get it in the record that I am having this type of pain.  During diagnosis, I underwent the Evoked Potential testing.  Everything came back normal except my eyes.  Accoridng to the doc, I have slowing and an eye thing.  I'm guessing optic neuritis?.   I hate when doctors talk to me like I don't know anything.  GRRRR.  Tell me what it is and I'll either ask questions or figure it out on my own.  I had to do that with my wife who also has medical conditions involving her brain.  Back on point.  His response was, "the evoked potential came back normal and buring pain is from nerve damage.  You don't have that."  Ok I accept that, but then 1) why are my feet burning? and more importantly 2) if there is no damage, why am I numb from mid-torso down.  Do the leisons mimic nerve damage, but don't actually show up on the evoked potential tests as damage?  I guess my question is if there is no nerve damage why am I numb and if I am numb without nerve damage why does it not show up on tests?
  • maria1
    heyjose, those are very thoughtfull questions and I dont know if I know the anwers. Damaged nerves should show up on tests but misfiring I dont think so. Muscle spasms caused by the nerves telling the muscles to be rigid and stay that way will help feeling numb. Also, as the neuro told me, when the nerves have been stressed for so long they become numb to the pain and you have to work on 'massaging' the nerves to the point that they feel the pain, sometimes we grow accustomed to so much pain we think it is normal, does that make sense? it shouldnt but it is what we humans do.

    And it is a slow road to identifying what the cause is, someone said that all pains come from the feet and pressure massaging the feet will fix that, I havent found someone who does that so I dont know if it is accurate. I know all about wearing the wrong shoes. How about an old mattress or a bad chair, or poor posture. Earth shoes are negative heel shoes, the heel is lower in stead of higher which stretches the back of the legs instead of never exercising them, that was a surprise for me. Everybody wear high heels, even if it is only a quarter inch, so the back of the legs never get stretched. An inversion table will remind you of monkey bars, it will stretch the muscles in the back that have never been stretched since the monkey bars, but should be done very very slowly because it is a painful transition. There is a book about anatomy for yoga that shows whick yoga stretches affect which muscles. But again, whateveer you try, begin slowly to get the nerves back into feeling pain. Prescriptions short cut the process but have their side effects, also, check the side effects of the drugs you are taking.

    Pick one problem you wnat to solve, one leg. Check out the post Take Charge of My MS, it is one of the finsest research projects for me to participate in, changing the mind set, and how we think is an important step in feeling better. And of course, question the doctor for specifics and dont leave the office until you get the answers you need, there are some very fine doctors who do say, "I dont know". Thank you for your post it is good for me to remember being numb to everything and at the same time being in horrific pain, now I am just an old lady who loves to giggle.
  • heymanhowsitgoing
    Wouldn't hurt to get an MRI of your brain and spine if you can. It really does sound like nerve damage or maybe restricted blood flow, but I'm not a doctor.

    Also see if you can get more details on your "eye thing"--like, specifically what the condition is. If it's not optic neuritis and it's something else, that'll give you something to go on at least.
  • heyjose
    Already did the MRI thing when I was diagnosed.  I have six lesions on my brain and spine.  All other tests have come back normal.  It is interesting though that I had a relapse shortly after being diagnosed that resulted in a slight worsening of symptoms to my legs and hands.  My next MRI is supposed to be somtime in May.  

    As an aside I was at my chiropractor the other day.  He had a chart on the wall showing where the nerves come out of the spinal column and what they affect/control.  I thought it was interesting that the areas I have lesions on my spine generally coorespond with the syptoms I have.  
  • heyjose
    Well I went back to the doc and asked the questions his answer was the pain comes from the small nerves and we don't test those.  Ok that makes sense, but that still leaves if the small nerves aren't wroking correctly isn't it because the larger nerves leading to them aren't working properly with MS?

    Anyway I started digging in to my nerve conduction study results and notcied a few things I thought were interesting.  The test shows I have very slight carpal tunnel syndrome, so they can not say my hand numbness is MS related.   By very slight, I'm talking >.5 milliseconds outside of normal and the deficiency is in the motor nerve, not the sensory nerve.  Looking at the results and comparing them to medical standards (they are tough to find online), my left hand should be more effected than my right.  There were more readings showing deficiency for my left hand, but my right is definately more numb.  
  • maria1
    heyjose, you got some answers, you can search on line for exercises for carpal tunnel syndrome to see if you can correct it without someone eventually cutting you open, you can also talk to your nerves to tell them to stop firing when not needed, you can also do muscle relaxing exercises for the spasms in you arms that are reac
    hing down to you hands, you can have massages on your hands and forearms, physical therapy has a machine you put your arm and hand into and i think it is rice that is blown around to increas blood flow to the arms and hands, you can use topical hemp or cbd oil cream to relieve some of the discomfort.  You can also get some cheap rice enough to put your hand in after you nuke the rice for about a minute, it is a cheap massage you can do while watching tv, but it wont do the arm unless you ahve one really big microwave, ha ha.
  • CarrieL
    The left side of my head (including scalp, face, lips and mouth and tongue) went numb in June 16, 2019. My MS diagnosis (from the Mayo Ciinic) came in Oct 2019. My neurologist said the numbness (and now sometimes tingling) may never go away. My first active lesion (I named her Eve) was on the pons area of my brain where the nerves for facial sensations sit as well. He believes that Eve screwed something up and there is no nerve damage that shows up on any testing. So as Eve dies the nerves may repair, or they may not. After six months I tend to think it is just one of my MS causualities. The only good thing is that it is not painful, just annoying.