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Strange symptoms - if not MS, then what?
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Strange symptoms - if not MS, then what?

Hello,

I am a 29 year old male in good health. Starting 7 months ago, I began to have some strange neurological symptoms. The first was a minor pins-and-needles feeling in my left hand that lingered for a few days. It went away for a few weeks, then came back again. Another few weeks, it came back again, but this time with a tingling feeling in my left cheek as well. Another few weeks later, both came back, and my left toe was tingling and the back of my left leg also tingled. These tingles are not like pins and needles - more like a soft tickle, if that makes sense.

The coming and going then changed into a more consistent low-grade range of mostly left sided symptoms (although my right cheek/jaw area sometimes tingles as well). Today, my left arm and leg "feel" weak. I use quotes because they're not actually weak, as I am able to continue playing basketball and tennis and hike as I always have. It's more of a heavy feeling I would say, and sometimes my left leg muscles get sore earlier in a workout than they normally would. It also sometimes feels like my left foot is dragging, but it's not. That heavy feeling...

I no longer have the pins and needles in my left hand and my the tingling in the left side of my face is replaced by more of a small numb patch in the jaw - with an intensity that varies during the course of the day and the week, though never very intense. I also have this periodic feeling of pressure in the left side of my lower abdomen that makes me feel like I need to urinate, even though my urinary patterns continue to be perfectly normal (i.e. no pain, infections, incontinence or urgency). Just pressure, as if someone is pressing on the left side of my bladder. This comes around for a few days every couple weeks. My GP and neurologist have never heard of this last bit. Another unusual symptom that cropped up in the last month or two is mild left ear pain that comes and goes for a couple days at a time - sort of like ear infection pain but not as painful.

I went through a battery of blood work, checking for everything from Lyme to HIV, B12 level, and other stuff. Everything was negative, although my B12 level was on the lower border of normal (200 on a scale from 200-900). My doctors doubt my symptoms are due to B12 deficiency, although I have read about people with similar borderline levels with various symptoms. I have been taking oral B12 supplements (1500 pcg) and got restested and the level is up to 500, yet the symptoms persist.

I also had a neurological exam, which was reported to be fine. Neurologist checked for reflexes, walked heel to toe, vibrating tuning fork, etc etc. I had an MRI of the brain on a 1.0T machine which was clear and an MRI of the c-spine on a 1.5T machine which was also clear. I was not aware of higher power machines at the time, although I read that 3T has only been shown to identify about 25% more lesions than 1.5T. Not sure if that's anecdotal or actual fact. I had evoked potential tests done, and were all normal except my left leg. My neurologist said in the absence of any other abnormalities found, he sees no reason to worry about it since EPs can be very sensitive.

He said if I wanted to, I could proceed to have a t-spine MRI and a lumbar puncture, but said he really doubted they would show anything abnormal given the lack of findings to date, and since the common denominator of my symptoms seem to be the brain. I'm in no rush to subject myself to more testing, but am frustrated and anxious about what is going on. I'll admit I'm prone to hypochondria (and now, apparently, cyberchondria), and am trying to tell myself, listen, all those things in the past you were concerned about didn't amount to anything, so don't worry about this either.

My worst fear naturally is MS, but I don't seem to meet any of the criteria - just this consistent, oscillating, non-debilitating left side sensation that's been a daily part of my life to some extent for more than 5 months now, with a steady addition of symptoms along the way. No abnormal fatigue, dizziness, vertigo, heat sensitivity, or other common MS symptoms. I understand that MS most commonly starts out in a relapsing/remitting pattern, with distinct attacks which last on average a few weeks, but it feels like I've had one long stretch of weirdness lasting 5-7 months.

I'm trying to convince myself I have Lyme disease, since I do spend a good deal of time outdoors and I live in the Northeast, and have read that the tests can sometimes produce false negatives (I had ELISA and Western Blot done), and that symptoms can vary wildly from person to person, can come and go, can be strange, and can mimic MS. Or, maybe the remnant effects of low-ish B12 that will take awhile to fully clear up?

Is it also possible that there are simply cases of unexplained sensations? My neurologist said he says patients everyday who report strange sensations who end up having nothing wrong with them. I have to believe he's sincere and honest, and did make plenty of time to discuss my case with me. Is there necessarily a reason to worry?

Thanks in advance for any input!
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11 Comments Post a Comment
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Avatar_m_tn
I haven't been on this board for a while, but decided to check in today. I am you. You are me. I am female and 34 but other than that, our symptoms are almost identical. I also live in the Northeast and began to fear MS when I stupidly googled my symptoms. I have had all the same tests as you with all the same results. I did NOT have a spinal MRI because the three, yes three, neurologists I saw all independently said that there was no reason to.
My main symptom has been interrmittant tingling/pins and needles in both hands, fingers, feet and toes. No where else. This started in August. I have tried to ignore the tingling and this is why I have not been checking this board! But, the tingling remains and so I checked the board today to find this post.
Curious what other people say about you, me, etc.
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352007_tn?1372861481
Hi there and welcome to the forums!  Boy are we glad you made a pitstop here!  You're now amongst the intelligent, most compassionate group on this planet!

I'm sorry for all that you're going through and to answer your question, "Yes" there's a need to worry that your body is not acting like it normally would.  I'm sure your Neurologist means well when he talks about other people coming in saying they have weird sensations with absolutely nothing wrong with them, but in my opinion, that is dismissing your concerns about your health and focusing on other people that has nothing to do with YOU.

This is your body, these are symptoms that are not NORMAL or everyone would feel them right?    

I agree, once you corrected your B12 levels above 500 (and trust me most doctors like it to be 500 or above) and you continue on having symptoms it needs to be investigated even more so.  Perhaps you're early in the stages of MS and no lesions can be seen at this time.  Perhaps in a year or two they could .....Just because you don't have lesions, does not mean you don't have MS.

There's a great article written by one of our forum leaders regarding this.  She has taken the time to explain things to the simplest terms:  http://www.medhelp.org/health_pages/list?cid=36

Trust me, take a look at our health pages and you will come out a new man with information packed up your whazoo.  

I'm not saying you have MS because I can't diagnose at all, Im not a doctor nor can any doctor diagnose over the internet, but sometimes, time is needed to figure out the culprit you know?  

Please don't be a stranger and welcome to the forums!!!!!!!!!!!!!!!!!!!!!!

Lisa
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Avatar_f_tn
Hi guys, first time I have ever posted on a forum thing.  I feel for your pins and needles.  SNAP, along with many other MS symptoms over past two years, several MRI scans are all clear thank goodness.  My neurologist is confident it will go away in its own time and that 2 out of 3 people who present abnormal at a neurological exam recover without any definite diagnosis or treatment.  good luck and hope you are better soon.
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1394601_tn?1328035908
I am not a medical professional.  My opinion is it doesn't sound like MS but then mine didn't either.  One thing I would be sure to have done if you continue to worry about having MS is I would insist on a 3t MRI on my cervical spine.  The 1.5 often will not show lesions because it is not high enough powered to pick them up.  The spine is a very confined space.
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152264_tn?1280358257
Similar experience here, but add in dizziness and a few other things (I do have Lhermitte's too). Electric shocks in my face but generally painless except the first episode--just light little shocks. Lots of paresthesias in differnet places. Totally numb patches that stayed many months, then went away. Similar pattern to yours: things start up, they go away and come back, new things start, go away and come back... never any big "attacks" but some process started in the summer of 1999 and has never completely gone away, although after the first two or three years I only got "new" stuff very rarely.

Oh, and your "heavy/weak" feeling sounds EXACTLY like what I used to get in my left arm and leg (not at the same time). I would think, I won't be able to push in the clutch, I won't be able to pick something up with this arm... but I would find my strength was actually normal, despite the limb FEELING weak, feeling like I needed to rest my arm on something. Very bizarre sensation.

Neuro exam has always been essentially normal, MRI has only small nonspecific spots, attempted spinal taps never resulted in getting any fluid to test.

This has been going on 12 years (dizziness much longer) so highly unlikely to be MS though I haven't had exhaustive testing, no spine MRIs except cervical. I cannot walk more than 2 blocks continuously anymore (used to walk 2 miles like nothing) but they attribute this (vaguely) to scoliosis. I am 54.

Sorry you may be left without answers... you've got LOTS of company! Doctors lose interest. If they don't see typical stuff on MRI, exam, and spinal tap, they will brush you off. I understand if they can't diagnose someone... but unfortunately they tend to subsequently just shut off and expect you to go home and forget about it all.
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Avatar_f_tn
Hi and welcome,,, I too was in your shoes (still am with the symptoms) but I really thought in my heart that I had MS, I went through all of the tests, MRi's and whatever else it requires for the ruling in or ruling out.

My MRI's continued to be normal. My Lyme tests continued to be negative, however,,,,, when I was a teenager, I had what's called Cat Scratch Fever. Come to find out, it's scientific term is Bartonella / which is a co-infection of Lyme Disease. I searched for a LLMD (Lyme Literate Medical Dr.) and scheduled an appt.  After starting on some antibiotics as a trial period for one month and I had gone through some worsening of symptoms along with my left hand tremor "getting better" the dr. proceeded to treat me longer and at this point I am "Clinically Dx'd with Lyme Disease and two of it's co-infections Bartonella and Babesia.

i spent many years looking for an answer and it was right in front of me all along..... You had said that you are trying to convince yourself that it is Lyme disease,,,, You may very well be right!!!!! WE know our bodies the best! If you think that's what it might be,,, it wouldn't hurt to find a LLMD and bring with you a list of all of your symptoms. You could check out the Lyme forum and there are also very knowledgable, caring people over there  ( like here on the MS forum ) that can guide you along the way.

You came to the right place for answers!!!  This is how I got my help and I couldn't have done it without all of the wonderful support..

Please stay strong,, we are all here for you,
Pam
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Avatar_m_tn
I had the exact symptoms on my left side a number of years ago, and went through all the neurological tests, including a spinal tap, MRI and inner ear exam (where water is injected in the ears). No diagnosis--except the doctors sent me to a psychologist. After having had these symptoms for months, it was accidentally discovered that the gas heater outside our apartment door (in the hall) had so much carbon build-up, the carbon needed to be sawed through. We moved, and my symptoms soon went away, though every now and then I feel a sensitivity/weakness on my left side. It's been 15 years since this happened. I'll never know for sure if carbon monoxide poisoning was the culprit, but it's worth looking into.

Joanna
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Avatar_m_tn
I have fibromyalgia and you can get the same symptoms as MS, I was tested for MS and all was negative but still showed signs, I would ask to be tested for Fibro
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1831849_tn?1383231992
Hi Dablizz - Just a heads up. This thread is over a year old and many of the posters are not around any more. Just didn't want you think you were being ignored.

Kyle
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Avatar_m_tn
Hello people, I am a 40yr old very healthy, non smoking, occasional drinking man apart from my symptoms which began 1 year 6 months ago. It started with a sudden sharp abdominal pain which then turned to the sensation you described about your bladder. After several gastric tests involving cameras in every orifice the doctors decided i was seeing the wrong specialist as they could find nothing wrong. 8 months ago i began with the pins & needles sensations on and around the left hand side of head & face, which are gradually spreading down my left arm & torso. An MRI scan of my head showed only a slight infection of the sinuses & after a 4 week course of antibiotics the symptoms persist. I also have elevated creatine kinase in my blood for no apparent reason. I have been prescribed today by a GP, Gabapentin, which i am reluctant to take after reading information on this medication. I am relieved to have come across your post as it describes my own symptoms exactly and would really appreciate if you could enlighten me further.
Many thanks, Curt
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1831849_tn?1383231992
Hi Curt-

This thread is over a year old and the original poster doesn't seem to be around anymore. Why not  "Post a (new) Question" and introduce yourself.

Kyle

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