Multiple Sclerosis Community
I really don't think this is MS...
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

I really don't think this is MS...

Hello everybody,

My name is Vineet. I am 17. Firstly, before anything, I am diagnosed with MS, however what is happening to me at the moment is nothing like it.

In June of 2012, I had MPFL surgery on both of my knees. Before that, between February and March of 2012, I was hospitalized due to an MS attack--I had a significantly big dosage of corticosteroids. Anyway, moving on, due to this, I have never really had any chance to exercise-elevated BP didn't allow me to exercise, and when I was finally given the OK, I did surgery. I was finally given the OK about 3 months ago, and ever since problems have started.

Whenever I exercise, or play sports--anything physical--the night after, some part of me will become numb or tingle. The first day I went out to play, I took soccer free-kicks for about 2 hours to get my kick back. The morning after I woke up with my right foot numb. After about 2 weeks, it went away. What triggered it going away was stretching. HOWEVER, this is not it. A couple of weeks after that, I slowly decided to ignore that numbness and go out again. Again, the same happened, however with something more--my right arm got numb as well. One day later, the right side of my lip got numb, and so did my tongue. These symptoms stayed for about 2 weeks. I stretched out my right leg, however this did not do much, but with eventual stretching, about 90% of the sensation in my right leg came back. One may think it is Uhthoff's Phenomenon however while in, for example, the shower or while taking a hot bath, it actually calmed the numbness at times... I was experimenting with stretching, and by stretching my neck, I regained sensation in my hand. Eventually, my tongue and lips came back too. However, after a week, WITH NO EXERCISING, the numbness came back. This time, stretching did not help much either. But, after 2 weeks, it went away. However, a patch on the right side of my lip and the left side of my tongue are still numb ever since. I did not exercise at all after that. About a month after that, an even more weird thing started happening, again, WITHOUT any triggers. I would start feeling extremely dizzy all of a sudden and I would start to get slurry speech, for about 2-10 seconds at a time. It would usually happen after standing up quickly, or such, and I know that you can get such symptoms if you suddenly stand up but this was different--it would happen some times when I stood up suddenly, however it would also happen if I were, for example, walking quickly or had a suddenly elevated heartbeat, or just woke up. This random dizziness and slurring went away in about 3 weeks.

Now, here are a few things that possibly triggered it to go away: 1) stretching. Stretching definitely solved my right arm's numbness. Literally, by stretching my neck, in a matter of about 5 minutes, I had regained probably about 80% of my right hand's feeling. 2) heat. Whenever I took a hot shower, the numbness reduced immediately, whether it was in my legs, lips, tongue or hand.

Some other things: This numbness was always on the right side of my body, right hand, right leg and right lip. The tongue, however, when it happened was the full tongue, and at the moment solely the left side of my tongue is numb. Now, finally, one more thing--my dad for reason has a hunch that such symptoms always happen for me in the cold, as previous MS attacks for me have been happening during the winter months. An MRI done this week showed an INACTIVE lesion in my cervical spine, and while that would somewhat explain the numbness in my right hand and leg, there was nothing to support the numbness in my tongue or lip. ALSO: THIS NUMBNESS WAS ALWAYS VARIABLE. IT WAS NEVER THE SAME. IT ALWAYS CHANGED. SOMETIMES IT WOULD BE NEXT TO NOTHING WHILE AN HOUR LATER I COULDN'T FEEL ANYTHING.

At the moment, my right lip and left side of my tongue are seemingly permanently numb, while recently (probably two to three days ago), parts of my right leg have started to get numb randomly. If I stretch it during the night, by the morning the numbness is usually gone. The numbness comes when I'm lying down. And, with my tongue, it is quite literally on the left side of my tongue. If you create a line splits my tongue in half, the left side of that line will be numb and the right side won't. Please. Please help me. My neurologist is hell-bent on the idea that this is MS even though he cannot explain the variable numbness, why it is triggered by exercise, why the tongue and lips are numb, etc when there is no lesion on those nerves. I can give you the MRI's if you want them. Please help me. Please.

Many thanks,
Vineet

(I have posted this same question in International Neurology and Neurology however did not receive any reply...Please, I really need help)
Blank
987762_tn?1331031553
Hi and welcome to our little MS community,

I don't think you should worry about there not being a lesion showing up on your MRI to explain a sx. Keep in mind that its almost impossible to map the visible lesions on an MRI, to every single symptom (sx) a person may have because the research has proven they dont show them all. Some areas a lesion forms has more predictability of the sx's expected ie spinal lesions but spinal lesions are difficult to detect, so in general a persons own body is a pretty good indicator of where the lesion has occurred.  

Heat is not actually suppose to be good for MSers, they use to diagnose MS by doing the hot bath test, if the persons sx's returned or worsened from being exposed to heat, they were dx with MS. Rising your temperature by as little as 1d can cause whats called a psuedo relaspse, its not a true relapse and a person with MS will go back to their normal, when they have cooled down and rested.

A new sx never experienced before is suppose to only happen whilst in a true relapse, so with you experiencing the sx's for two weeks or more, it seems likely that you had a relapse. I have to wonder though if you are possibly making an assumption that stretching takes away your numbness, when resting could be the alternate explanation?

I am a little confused by some of what your saying, "If I stretch it during the night, by the morning the numbness is usually gone. The numbness comes when I'm lying down." this seems to contradict itself but to me resting would be the alternate explanation because usually stretching helps ease spasticity rather than numbness. When you say "numbness" is that a tingling or total absence of feeling? And when you say its never the same, it always changed, is this still in the same spots/places and its just the sensation that's different?

We have a health page on paresthesia and other health pages that will help to explain things, look to the right of your screen for "most viewed health pages" if you would like some more helpful information on how things work.

Cheers.......JJ

    
6 Comments Post a Comment
Blank
Avatar_m_tn
I am not sure if I have said this up before, however, hot showers actually helped the numbness to go away at times, especially with the numbness in the hands and legs. Also, at times I feel weird in my heart, however I am not sure--it could just be me..
Blank
Avatar_f_tn
have you discussed this with your neuro or the person who dx' you?
gone to the MS national website for info?
are you on any DMD drugs yet?

denial comes and goes and sometimes is the hardest in the first year.  
Blank
987762_tn?1331031553
Hi and welcome to our little MS community,

I don't think you should worry about there not being a lesion showing up on your MRI to explain a sx. Keep in mind that its almost impossible to map the visible lesions on an MRI, to every single symptom (sx) a person may have because the research has proven they dont show them all. Some areas a lesion forms has more predictability of the sx's expected ie spinal lesions but spinal lesions are difficult to detect, so in general a persons own body is a pretty good indicator of where the lesion has occurred.  

Heat is not actually suppose to be good for MSers, they use to diagnose MS by doing the hot bath test, if the persons sx's returned or worsened from being exposed to heat, they were dx with MS. Rising your temperature by as little as 1d can cause whats called a psuedo relaspse, its not a true relapse and a person with MS will go back to their normal, when they have cooled down and rested.

A new sx never experienced before is suppose to only happen whilst in a true relapse, so with you experiencing the sx's for two weeks or more, it seems likely that you had a relapse. I have to wonder though if you are possibly making an assumption that stretching takes away your numbness, when resting could be the alternate explanation?

I am a little confused by some of what your saying, "If I stretch it during the night, by the morning the numbness is usually gone. The numbness comes when I'm lying down." this seems to contradict itself but to me resting would be the alternate explanation because usually stretching helps ease spasticity rather than numbness. When you say "numbness" is that a tingling or total absence of feeling? And when you say its never the same, it always changed, is this still in the same spots/places and its just the sensation that's different?

We have a health page on paresthesia and other health pages that will help to explain things, look to the right of your screen for "most viewed health pages" if you would like some more helpful information on how things work.

Cheers.......JJ

    
Blank
4907540_tn?1361980455
I have not been dx with MS but have Transverse Mylitis at the moment so can understand how confusing the tingling/numbness can be and any other symptoms that you can't get your head around.

I quiet often suffer myself with tingling on the left side of my body either i have it in my face or my fingers and sometimes have the numbness and tingling in my left foot and toes it can last anything from 10 mins to an hour.

I also find that i have intense tingling down the left side of my body when i excersie but it doesn't stop me from carrying on..

My advice is to speak to your neuroloist MS specialist and ask them the qestions that you seek..

You have been lucky that your diagnosies was quick as for some people it can take years..

I know it's easy said than done but try and stay positive..

Take it day as it comes best wishes for the future..

Kerry x
Blank
667078_tn?1316004535
You could get a second opinion from a MS Specialist. Not all MS acts the same. I take hot baths every day. My MS started when I was two years old and was so subtle I did not know I had it. When I was 44 my Doctor said there is something very wrong. I asked her what she was talking about. I am now almost 50 and just starting to notice the MS. Some symptoms I had my whole life so I thought they were normal, they were for me. I saw a lot of Neurologist and had a lot of tests before I believed them.

My MS baffles the Doctors. I look perfectly fine. I hike and ride horses.

Alex
Blank
198419_tn?1360245956
Hi Vineet!

Thank you for joining us :) and bringing up an important topic.

How can this be MS when it's so different than what I read, what I'm experiencing, and others? How can this be MS is the doctor cannot explain the variable numbness? Is this really MS? Other things cause this, and could my doctor be wrong? Aaaaaaaaaaah Questions many of us have pondered in the beginning, middle, and end, or I should say the "now."

There is no "single" smoking gun test that 100% indicates MS. It's clinical, there are many pieces of the puzzle that must match/exist, and here is the biggy - it can and does present so differently from person-to-person.

Knowing this very well (I was a disbeliever from the onset w/my dx) My suggestion?  Go get a second opinion from a well known top MS doctor (there are many).  Bring all of your most current, or recent imaging, labs, etc. Tell this specialist exactly what you are thinking, and let he or she examine, explain, and discuss.

Your 17 - you deserve to proceed through life with some level of confidence that #1 you know what you have, or do not have and #2 that things change and if ultimately this is confirmed MS, your current status may not be your future status. I've seen improvement that I would have never thought imaginable :)

Welcome to the forum. I'm sorry you did not receive responses in neurology forum - be rest assured, we'll listen, and give you the best of what we know.

-Shell

Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Neurology Answerers
1831849_tn?1383231992
Blank
kwarendorf
Great Neck, NY
667078_tn?1316004535
Blank
HVAC
Durham, NC
987762_tn?1331031553
Blank
supermum_ms
Australia
Avatar_f_tn
Blank
essdipity
338416_tn?1413581329
Blank
jensequitur
Fort Worth, TX
Avatar_f_tn
Blank
SarahL2491
Alagash, ME