Numbness

[alicetinker]

Hello to everyone :)

I am new to the forum, currently in limbo. I have had 3 previous episodes but this current episode started 8 months ago and so did the more sinister symptoms.

I read a previous post about numbness with interest. I am suffering from a great deal of what I would describe as numbness (as well as other symptoms) and it is rather unsettling.

Can anyone offer advice or information about MS numbness? What to note regarding symptoms?  I am now keeping a journal I don't want to write a novel as I did when I started ;)

Thank you for any assistance.

Alice

[alicetinker]

Yes, but a *yank* living in the UK :) Still we have great private medical insurance which *should* help.

Thanks again.

Alice

[Quixotic1]

Ahh, I didn't notice that you were from the UK.  Thinkgs move at a different pace there and they use different criteria.  We'll still try to help/

Q

[alicetinker]

Re: vestibular system

The consultant that I was referred to did order vestibular tests and these were normal.

I do not actually know much else and, embarrassingly, didn't ask. I was just told the tests were wnl.

Alice

[alicetinker]

Hello

The tests he ordered  were:

Mri including spine w/contrast
EMG
VEP

He stated these were all normal.

Unfortunately, his office lost the original MRI brain films from 2004 which we were asked to provide for comparison so we have nothing atm to compare.

Thank you for your interest and assistance and for taking the time to reply. I will certainly consider everything you have suggested.

Alice

[Quixotic1]

Wow, you have certainly had a typical experience for someone who suspects they may have MS.  What I missed up there was a description of your MRI.  That is the first "test" one should order "for MS."  And MS is certainly within the differential diagnosis for vestibulopathy, paresthesias and cognitive difficulties.Actually the first thing one should do when presented with new neurologic symptoms is a thorough history and neuro exam.

You need to run, not walk, from this neurologist.  You are paying for a full consult.  Just because he diagnosed migraine in the past, does mean that that is the only diagnosis you can have for the rest of your life.  Talk of unimaginative and rigid!  Migraine disease is not consistent with what you are describing, unless he is hypothesizing that new entity of "complex migraine" in which you are in the very rare few that have an aura lasting many weeks and do not have the subsequent headache.  Even with that diagnosis, an MRI should be done.  So dump that loser and move on.

Your PCP should be able to order an MRI to be done using MS Protocol - which is a specific manner of doing the scan using special techniques and slice sizes.  So, we are all wondering what these three tests for MS are.  If they are an MRI, an LP, and Evoked Potentials, I will grant you that they are "sort of" tests for MS, in that, if they are positive they point toward MS.  If they were blood tests the doc was pulling your leg and trying to get you out of his office.

If the doctors are standing firmly behind a diagnosis of vestibulopathy, then you need a VENG - VideoElectroNystagmoGram to see if they can distinguish whether the vertigo is arrising from problems in the inner ear (a peripheral problem) or in the cranial nerve, brainstem, or brain (a central problem, suggestive of MS).  These are done best by neuro-otologists and a list of the ones in your region can be found by going to vestibular.org the Vestibular Association of America's website.  Look for "Find a Practitioner."

The problems with your gait and hand coordination should have been examined carefully by the neurologist.  Did he do a really thorough exam?  I would be surprised it your reflexes aren't very brisk or hyperactive.

I have to agree with everyone above.  You need a new neurologist.  You need an MRI done with and without contrast of the brain and spinal cord (both cervical and thoracic).  If possible these should be done on a 3T machine, especially the one of the spine which is harder to image on lower resolution machines, like the usual 1.5T.   Avoid the open MRI.  You can read the Health Page called "What is the Difference Between the Old MRI Machines and the New Ones?"

I recommend calling the MS Society and finding support groups for patients with MS.  Attend one or a few and ask around who the good, compassionate and smart neuro's are.  Patients will tell you who the skunks are and who are great.  Then chose one and make an appointment.  the MS Society has a list, but the doctors themselves volunteer that they are specialists.  There is not certification or Board requirement.

Please read the write up I did on the McDonald Criteria for diagnosing MS.  It is long, but I tried to meake sense of the topic. You'll see that the basic requirement for diagnosis of Relapsing Remitting MS is based on the history of more than one attacks or relapses of the kind seen in MS, and of finding 2 or more abnormalities on neuro exam of the kind seen in MS which suggest demyelinating lesions in the CNS.  Nystagmus, hyperactive reflexes, +Romberg, disdiokinesis (problems with rapidly alternating hand movements), clonus, + Babinski are all examples of these physical findings.  Unfortunately, numbness and cognitive problems are harder to document.

One other thing that you might request is neuro-psych testing for teasing out any congitive difficulties versus depression or anxiety.  This can show a pattern consistent with MS.

First and foremost - a new neurologist.  The guy you have is a loser and needs to be kicked to the curb.

Welcome, I hope you find a good place here!

Quix

[essdipity]

You don't say what tests you underwent. If MS is suspected there are quite a few, mainly to rule out MS mimics. Please see our Health Pages for more info.

I would say, however, that it's long since time for you to get a new neuro. Even if this one were good, you no longer have confidence in him and it's time to move on. At the very least you need MRIs of brain and spine, with and without contrast.

Have you seen an ear specialist? You need tests to determine whether your vertigo really does originate in the peripheral nervous system, or whether it's a CNS thing. I advise you to arm yourself with good information and pursue a diagnosis with an MS specialist.

Best of luck,

ess

[alicetinker]

Hi

Thank you for your reply.

Where to begin...this is the fourth and worst neurological episode I have suffered since 2003.

This began with a vestibulopathy dx 12 months ago. 5 months after the dx I had a sudden,brief, 3 week period in which I was significantly better! It was extraordinary as vertigo, nausea and blurred vision had basically abated.

Then, vertigo returned suddenly, the neuro's explanation was this was the 'up and down' phase of recovery from vestibulopathy. However, with the vertigo came more sinister symptoms for the first time-starting with numbness/tingling progressing to cognitive problems and some problems with my gait and hand coordination.

When we questioned the neuro he sent me for a referral - diagnosis migraine. As I have a longstanding 30 year history of migraine I questioned this and my neuro said he did not agree with the diagnosis. As he had diagnosed me with migraine 4 years ago I guess he didn't have much choice ;^) (I also questioned HIM 4 years ago about diagnosing me with something he knew I already suffered from)

I finally insisted on tests for MS as my history strongly suggests this and neuro still was not budging on his original dx OR interested in these new symptoms or that they were worsening. In fact, it seemed when we started questioning his original diagnosis the neuro becomes more dismissive and disinterested.

He did order three tests for MS which he reported as all within normal limits. Meanwhile, I am still having symptoms and worsening...

My family and I are frustrated and worn out.

Hope that helps.

Alice

[essdipity]

Hi Alice. Welcome here.

Numbness is on the spectrum of parasthesias--abnormal sensations that nearly everyone with MS has experienced. There's a very good explanation of this in our Health Pages. You can find a link to them in the upper right of this page. Then scroll down to the Parasthesias essay.

Actually you will find a great deal more info in the Health Pages, so I hope you will take time to read them. It's a lot to digest, but you can always refer back if you get confused.

Would you like to tell us more about yourself and what's going on with you?

ess