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What Causes Numbness In Legs And Loss Of Balance While Diagnosed With PPMS?

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Posted on Wed, 10 Feb 2016
Question: I am a 51 Year old woman who was diagnosed with Progressive MS 6 mos. ago. My doctor thinks that it is Primary Progressive because for over 6 years I haave been going to the doctor and noone believed that my symptoms were MS. I had a spinal Tap that registered 14 on the Oligloclonal Bands test and before I was diagnosed I kept telling the doctors that I felt that I had Alzheimers. That's how bad my cognitive symptoms were. Also the numbness was in both legs from my waist down and in both arms on the underneath side all the way down tru my 4th and 5th fingers. Also my biggest problem is that I constantly have this "Zinging" sensation that comes from the inside of my body to the outside. I feel like I can hear it. I call this my "Mach 1" intense nervous feeling. Sometimes I go into "Mach 2" mode and I feel like everything is the sensation of someone's fingernails going down a chalkboard. But mostly constant is the "Zinging" inside, just like a constant vibration from within. While you drive your vehicle at 70 miles an hour, imagine feeling the rumble, or vibration, and sound that makes. I live with that constantly every waking hour. The only relief I get is when I go to bed (and I have slept on my stomach for about 27 years now) and I sleep like a baby for 8 hours every night. Once I get up, it begins all over again. Sitting or standing does not seem to make any difference. This has been building for I would have to say probably appr. 6 years now. It has just become more intense and I had to finally start questioning this. I have terreible balance now and am experiencing quick, sharp stinging pain sensations for no reason, and then gone as fast as it came on. I also now have ice cold feet and hands and they turn so white (almost blue) that i am having a real hard time standing for more than a minute or 2. Could you please help me understand what that "Zinging or Vibration" is inside me?I have always been very health and active, sports, etc. After my neck surgery, I began going down hill rapidly. I always told myself that it was just the normal aging process, so I never really had any sudden exacerbations to my knowledge. I was always raised to just "Cowboy Up" I ignored alot of discomfort in many ways all through these years cause it all seemed as if it was just a figment of my imagination.

Also, I had donor bond grafts for my surgery, that turned out to be uncleansed bone through Medtronics Company that was a scandal back 2 years after I had the surgery. I was tested for everything possible back then and at that time came out clean. Could there be a relation to this foreign matter in me and the fact that my immune system started attacking my central nervous system? It doesn't matter about what happened to me anymore but I can't help but feel that after that time, it seems that this beast was unleashed on me and that's why I have MS now. Could that be?
doctor
Answered by Dr. Dariush Saghafi (7 hours later)
Brief Answer:
Central form of Neuropathy often described in MS and other conditions

Detailed Answer:
What you're describing is a Central form of NEUROPATHY as a result of lesions located in the brain or spinal cord and usually in patients who initially present with other sensory disturbances as well. For example, do you suffer with numbness, tingling, difficulties with sensing proper temperatures, burning, electric sensations, or other weird or unexplained feelings that you feel either internally or externally?

If you have not obtained an MRI of the brain and spinal cord recently then, a study may disclose new lesions that can explain what is likely going to cause a neuropathic sensation such as internal vibrations as a consequence of the disease process, etc. It may really not be the actual INSIDES of the body that are sensing anything in particular but more likely would be one small point or area of the brain which is "misfiring" within the sensory cortex where all information is RECEIVED from the body and limbs that is acting up giving you the SENSATION that internally you're tremoring. The trick to treating you would be to somehow identify exactly from where those aberrant signals are being generated and to "turn off the switch." That could be with high dose methylprednisolone or some other form of IV steroid. I would also look carefully at vitamins B12, folate, and Vitamin D, D2, and D3 levels and make sure those are all WELL WITHIN normal limits.

In reality nobody has a clear cut explanation what this sensation is or where it emanates from, however, we certainly believe that in MS (as in other disorders such as Parkinson's, ALS, and Huntington's disease) the degenerative processes which are affecting in the brain and spinal cord are responsible for these feelings of vibration. I conducted an hour long search on the internet and in specialty texts having to do with MS and though the symptom is clearly recognized and annoys most people there is nothing published of a credible nature that gives a reasonable explanation from a neurological perspective. There are YOUTUBE videos of people who claim to know exactly what the tremoring is all about and I've looked at those bottles.....suffice it to say that I don't recommend spending YOUR time looking at those videos...I don't think they know what they're talking about.

As far as the cause to your MS..unfortunately, your question is asked by many each day and it is always the same answer. There is no known cause. Theories of a virus, genetics, environmental cues which trip immunological processes to run awry, low vitamin D, etc. simply have no fool proof scientific evidence to back them up as causes. MS occurs in people who have not had any bone grafts at all therefore, it's not possible to state with any precision or confidence that was the definitive cause in your case. Keep in the mind that the first time a person has a symptom is not the time that MS "began"....it's when enough damage had been accumulated (which usually takes months to years) so that the patient noticed something. Then, usually between the time a patient notices something to when they decide it's time to go in to see the doctor and get a diagnosis is another time span that can at times be YEARS.....so you can see how the whole process from the time of its inception to the time of diagnosis can be a very long time. Does such a time line fit what happened to you with the bone graft? I don't you...I think you would be the best judge of when things occurred in comparison with when they COULD'VE started in your case.

I hope this addresses your concerns and that you'll keep me in mind for future questions regarding these or other neurological/medical issues I may be able to help answer.

I'd appreciate your rating this interaction on a HIGH STAR SCALE if you found the information informative and would be grateful for a few words of feedback.

Write to me at: bit.ly/drdariushsaghafi for additional comments, concerns, or to provide status updates if possible.

This consult request has taken a total of 90 minutes of time to read, research, and respond.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (10 hours later)
I really appreciate your information you have shared with me. I feel like I have more information than ever!

What is the reason for my hands and feet turning white (almost Blue) whenever there is pressure put on them such as standing or holding something? Also turn ice cold and then get extremely numb? I am not diabetic so I'm just wondering if the loss of circulation is going to lead to extreme decisions someday to have to remove any of my limbs or extremities. By the way after about 5 minutes the blood will come back and get to tolerable sensation again.
doctor
Answered by Dr. Dariush Saghafi (3 hours later)
Brief Answer:
Not likely due to primary neurological issues

Detailed Answer:
From your description I do not believe your blood flow issues are due to any PRIMARY NEUROLOGICAL ISSUES (i.e. related to your MS). I wonder if you have a rheumatological type of problem such as vasculitis or a lupus like syndrome of some sort. In people with 1 autoimmune type of problem it is relatively common to find other autoimmune problems so it wouldn't be unreasonable for you to receive a consultation with another specialist. I doubt the problem is anything that a vascular surgeon would be best to get involved since clearly the problem is widespread making it less likely to be something that a surgeon would be able to fix. Also, what you're experiencing is probably not a "loss" of circulation in the conventional sense but rather it's a REDUCTION in blood flow due to increased vascular resistance/arterial contraction secondary to overstimulation of pressure and other receptors in the hands and feet. Again, I suspect that if there is a form of autonomic dysfunction that it is likely part of some form of vasculitic problem which may have an autoimmune component.

If you were before my attention as my patient I would refer you to a rheumatology doc and have them evaluate you. If everything else pans out then, I would recommend looking at autonomic dysfunction (could be related to MS) as a possibility and send you for specific and a fairly robust investigation.

I hope this addresses your concerns and that you'll keep me in mind for future questions regarding these or other neurological/medical issues I may be able to help answer.

I'd appreciate your rating this interaction with a HIGH STAR SCORE if you found the information useful and would be grateful for a few words of feedback. I'd also appreciate your CLOSING THIS QUERY as well if you are satisfied with the responses I've provided.

Write to me at: bit.ly/drdariushsaghafi for additional comments, concerns, or to provide status updates if you'd like.

This consult request has taken a total of 114 minutes of time to read, research, and respond.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Answered by
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Dr. Dariush Saghafi

Neurologist

Practicing since :1988

Answered : 2473 Questions

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What Causes Numbness In Legs And Loss Of Balance While Diagnosed With PPMS?

Brief Answer: Central form of Neuropathy often described in MS and other conditions Detailed Answer: What you're describing is a Central form of NEUROPATHY as a result of lesions located in the brain or spinal cord and usually in patients who initially present with other sensory disturbances as well. For example, do you suffer with numbness, tingling, difficulties with sensing proper temperatures, burning, electric sensations, or other weird or unexplained feelings that you feel either internally or externally? If you have not obtained an MRI of the brain and spinal cord recently then, a study may disclose new lesions that can explain what is likely going to cause a neuropathic sensation such as internal vibrations as a consequence of the disease process, etc. It may really not be the actual INSIDES of the body that are sensing anything in particular but more likely would be one small point or area of the brain which is "misfiring" within the sensory cortex where all information is RECEIVED from the body and limbs that is acting up giving you the SENSATION that internally you're tremoring. The trick to treating you would be to somehow identify exactly from where those aberrant signals are being generated and to "turn off the switch." That could be with high dose methylprednisolone or some other form of IV steroid. I would also look carefully at vitamins B12, folate, and Vitamin D, D2, and D3 levels and make sure those are all WELL WITHIN normal limits. In reality nobody has a clear cut explanation what this sensation is or where it emanates from, however, we certainly believe that in MS (as in other disorders such as Parkinson's, ALS, and Huntington's disease) the degenerative processes which are affecting in the brain and spinal cord are responsible for these feelings of vibration. I conducted an hour long search on the internet and in specialty texts having to do with MS and though the symptom is clearly recognized and annoys most people there is nothing published of a credible nature that gives a reasonable explanation from a neurological perspective. There are YOUTUBE videos of people who claim to know exactly what the tremoring is all about and I've looked at those bottles.....suffice it to say that I don't recommend spending YOUR time looking at those videos...I don't think they know what they're talking about. As far as the cause to your MS..unfortunately, your question is asked by many each day and it is always the same answer. There is no known cause. Theories of a virus, genetics, environmental cues which trip immunological processes to run awry, low vitamin D, etc. simply have no fool proof scientific evidence to back them up as causes. MS occurs in people who have not had any bone grafts at all therefore, it's not possible to state with any precision or confidence that was the definitive cause in your case. Keep in the mind that the first time a person has a symptom is not the time that MS "began"....it's when enough damage had been accumulated (which usually takes months to years) so that the patient noticed something. Then, usually between the time a patient notices something to when they decide it's time to go in to see the doctor and get a diagnosis is another time span that can at times be YEARS.....so you can see how the whole process from the time of its inception to the time of diagnosis can be a very long time. Does such a time line fit what happened to you with the bone graft? I don't you...I think you would be the best judge of when things occurred in comparison with when they COULD'VE started in your case. I hope this addresses your concerns and that you'll keep me in mind for future questions regarding these or other neurological/medical issues I may be able to help answer. I'd appreciate your rating this interaction on a HIGH STAR SCALE if you found the information informative and would be grateful for a few words of feedback. Write to me at: bit.ly/drdariushsaghafi for additional comments, concerns, or to provide status updates if possible. This consult request has taken a total of 90 minutes of time to read, research, and respond.