question for a newbie

[questionsinboston]

Hello,

I have lurked on this board on and off for years. I want to be as concise as possible so I am sure I will leave out the majority of details! I do not think that I have MS, so please do not think this is paranoia or a hypochondriac venting. I just want to know if you have any ideas or answers for me...other avenues to explore.

I am 35 years old and live outside of Boston with my husband and kids. "Perfect Health" is a fine way to describe me with a few exceptions (none of them visible to the human eye).

For the last few years, I have had increasing tingling and/or numbness in ALL of my four limbs. It has been consistently numb on the top of my right foot for about two years. My left foot sometimes tingles but it does not have the patch of numbness that my right foot has. My hands are both fine although when I hit any part of my hands, my wrists or my lower arms (from elbow to hand), I feel pins and needles. It is a VERY odd sensation.

I do not have any other unusual neurological symptoms as far as I can tell. I have been to three neurologists who have done a brain MRI with and without contrast -- all results fine. All three of them cannot find a thing wrong with me. I have ignored the problems for a year (went to my last neuro about a year ago).

This cannot be anxiety as I have tried therapy and she and I agreed that I am good (if it WAS anxiety, I would gladly accept it!). I exercise, eat healthy and have a decent lifestyle.

I am frustrated. I get scared sometimes that it COULD be MS (but it wouldn't effect all four limbs so subtlety?), Parkinsons (but again, all four limbs, at the age of 35, in a subtle manner?), ALS (I don't even want to research it so I don't), unexplained neuropathy (one neuro's suggestion), etc.

Any ideas? Avenues? Paths?

Thanks so much

[fortywhat2]

Hi
I'm just chiming in to recommend a particular Dr in Boston that might be able to help you or at least head you in the right direction.  I live in MA and have Primary Progressive MS.  I go to Beth Israel Deaconess Medical Center in Boston.  I recommend Dr Marion Stein.  I've been a patient of Dr Stein's for the past 5 1/2 years.  I discovered her because the neuro I was seeing referred me to her for a lumbar puncture because she is one of the top Dr's for this particular procedure.  I find Dr Stein to be very caring and truly listens.  Good luck with your search for answers.  I too agree with everyone about an EMG.
Debbie
~ live as if all your dreams came true~

[maxthecat43]

I too think that a serious vitamin deficiency, or even thyroid problems may well be the next areas to have checked.  

Thyroid problems can cause neurological deficits.

The only reason it doesn't sound like MS to me, is that you have the problems on both sides of your body.  MS patients can have problems with both sides, but it doesn't usually present that way at first (usually it takes a considerable amount of time, and one side is significantly more affected than the other...)  

[essdipity]

Hi. There are (somewhat sneaky) ways of asking for tests without coming right out and saying so. It's too bad we sometimes have to resort to this, but if we do, we do. As long as we don't go to the well too often, things should be okay.

I don't know if you're familiar with our Dr. Quix, who used to post here very often, and now only stops in occasionally. She used to tell us to say we had a friend who is a doctor (Quix also has MS), who suggested such and such. If you say this in a hesitating way, in just the right tone, it comes across as your just wanting to cover all the bases and so are repeating what your doctor friend told us, and not ordering this one around. I took advantage of this kindness a couple of times back in the day before my diagnosis and it worked like a charm.

If Quix were online now I'll bet she'd still say the same thing. I'm not Quix, though, and I'm not a doctor, but I here and now declare myself to be your friend. So you can honestly say, at least, that you have a friend with similar symptoms who was helped by whatever, and who is urging you to have a test for such and such, or using such and such a technique. It seems to me your doc would have a hard time explaining why he'd refuse this.

Sneaky, yes. Useful, yes.

Good luck.

Your friend,
ess

[kwarendorf]

Hi QIB -

There is some room to operate in the gray area between being a complete hysterical pain in the A** patient and taking everything the doctors say as gospel.

I agree with those who have suggested an MRI of your C & T spine as a reasonable next step. There are many among us who have been diagnosed with MS and have only spinal lesions.

I would have a discussion about this with the neurologist with whom you feel you have the best rapport.

Kyle
PS Say Hi to my many cousins in Boston. Mom was born and raised in Roslindale!

[Dagun]

Hi Boston, I was in Boston and Plymouth last month and it was wonderful :).

I´m sorry about what you are going through, but I know a little about this feeling of not getting answers and feeling crazy (not so good). I have had tingling, nerve pain and lot of other strange stuff for more than 3 years now.

I would think the neuros should have done EMG test by now, they need to do it to find out if you have some kind of Neuropathy. At first my neuro thought I could have polyneuropathy or somthing like that but the EMG ruled it out. If they are talking about unexplained neuropathy then it is really strange to skip this test. I sure hope you can get that test and get some answers. Let us know how this goes.

My best wishes,
Dagun

[questionsinboston]

Thanks so much for those suggestions!

I have had all blood tests numerous times. All show everything to be as normal as can be.

No one talked about my spine or did any nerve conduction tests. I had read about them, but I know the rules about not suggesting anything to dr's or they think that your Dr. Google skills have led you to believing you are a real dr. I wanted dr's to take me seriously, so I didn't make any suggestions and was therefore left with no further testing.

I know I should be an advocate for myself, but I am a busy person and a confident person. The dr's insistence that I am fine makes me feel like I am crazy which is why I have been ignoring for a year.

I guess I will try to go back soon and get more tests done in nerve conduction and EMG.

Thank you!

[karryon55]

Hi there & welcome,

Have you had Nerve Conduction studies or EMG?
Have you had the blood work done for B12, Celiacs, Fasting Glucose Tolerance Test?
MRI of the entire spine?

I know there are lots of other things but I can't remember right now. :-/

I would have thought the NCS or EMG would have been the top of the Neuro's list....hmmm.

Good Luck with it all.

Karry.

[PastorDan]

I'm with the two smart ladies who answered ahead of me.  My first thought, however, was a circulatory issue, or possibly diabetes - of either type.

[immisceo]

So sorry you're dealing with this, but happy you've come out of the shadows!

Have you had MRIs that included your thoracic, cervical, and lumbar spine? Vertebrae issues can throw up all kinds of crazy sensations. I agree with Alex that bloodwork could also shed some light.

[HVAC]

What blood work have you had? There a few conditions that can be found through blood tests. One simple one is vitamin B 12 deficiency.

Alex