Who is is dx but does not suffer numbness?

[PatHC]

You know how sometimes when you finally get a dx after all the years of limbo? You question if it is true and think maybe they got it wrong?

Well - not quite true in this case I had 20 years of sx and no idea what was causing them it was only when I was told mild MS last December that we pursued a positive dx. So 17th June 2009 is now imprinted on my memory forever as it was the day I got a positive dx of RRMS and realised I had had it 20 years!!

Well this doubting Thomas is still questioning and it occurred to me last night, I have only ever had one numb patch on my back. Yes I have had load and loads of other sx but no numbness. So my question is:

Anyone else here with a positive dx and no numbness?

Thanks folks

Pat
x

[Lulu54]

Pat,
Welcome to the doubting club - on more than one ocassion I have stopped and honestly believed that I don't have MS.  I actually have that on my list to ask my neuro again in a few weeks - are you sure?

I can't answer your numbness question, because I have a perpetually numb leg and have had that for over a year.  I have feeling in it, but it is an altered feeling that never changes.  Its as is i have a glove over my leg and can't quite feel the skin when I touch it.  It makes shaving my legs quite interesting.  

To my understanding, numbness is NOT a requirement for MS - but it is a frequent sx.  

enjoy the day,
Lulu

[PatHC]

Thanks Lulu as always understanding and helpful.

I have had strange sensations like feeling as if there is a band around my ankle and I get loads of zaps, tingling, buzzing like so many others but I am still curious about the numbness as it tends to be the first thing others ask me about.

I have today off work as leave and we have slightly cooler weather here today as we have just had a mini heatwave this week - yes in the UK!!

So enjoy your day too.

Pat
x

[Karen99]

My experience with numbness happened 8 years ago that lasted for about six months.  Never had it since.

[PatHC]

Thanks for answering. Can I ask if you are dx?

Pat

[Wobbly]

Hi Pat, I can imagine you guessing if they are right or not... I have numbness in my fingers, toes, legs... come and go.. but as you know I'm not yet Dx with anything..
execpt Demeylating Disease of some sort..

take care
wobbly
undx

[Karen99]

Pat - Yes, I was diagnosed in 2001.  At that time I had substantial numbness.  The numbness started on my entire left side - like I was cut right down the middle in half.  Next came numbness on the entire other side as well.  Not totally numb - diminished sensation but enough that all pain I had was gone. It improved slowly after IV Solumedrol.

The C-spine MRI showed a healed lesion at that time, as well as several brain lesions.  Since being dx, I accumulated a few more.  

[shoshin]

I have numbness is spades, but so far as I understand it neither numbness or any other particular symptom is necessary for an MS dx. I read a book a while ago called Waist-High in the World: A Life Among the Nondisabled by a woman named Nancy Mairs who has MS (good book--I recommend it). She apparently has only motor symptoms (so no numbness/pain), but her motor problems are extreme. At the time she wrote the book, she could hardly move. MS is just variable. But you definitely don't have to have numbness.

sho

PS I do wonder (and probably most of us do) sometimes if the doctors messed up and I really don't have MS, but I have to admit that I have no idea what else it could be since the doctors seem to have ruled out the other likely possibilities.

[PatHC]

Yes I have heard that no sx are 'normal' for MS and sx can vary to the extreme. But I have still not met or heard from anyone without numbness who has MS so it would be nice just to have it confirmed.

Thanks for the book tip Sho, I'll go take a look, since my mobility was severly affected last year and I haven't full recovered even yet.

Pat

[Guitar_grrrl]

Hi, Pat,

I was only diagnosed in May, after numerous burning paresthesias after the flu in the 90's.  I stopped getting the flu after that, as an aside...hmmm....Leg spasms in the early 2000s, Trigeminal Neuralgia in 2005, and now, more leg spasms (last 19 months),  and weakness, and tremor on a more or less constant basis.

Thankfully, I can still ride my bike, but both my feet are completely numb for 2 hours after a ride.  I also need to take my rides early in the morning while it's still cool.  I took a ride at noon on Wednesday, and completely ran out of energy/strength on the way home.  Took it very slowly in 1st gear home, but I made it. Really difficult to stand and walk for about 30 minutes.   And still, the numbness in both feet after.  I guess these are more of a pseudo exacerbation  from heat, exertion, etc...

Thankfully, numbness on a constant basis isn't a problem.

Cheers,
Guitar_grrrl

[scaredguy309]

i am 95% convinced i have ms and yet i have never had numbness...Everything strted in 2007 after an infection. I've had many of the other symptoms though....heat fatigue, facial weakness, left side of body weaker than right, hand tremors, migranes, eye pains with blurred vision (ON), trigeminal neuralgia, slight tingling in lips, twitching and more...

[PatHC]

Thanks guitar grrrl and scaredguy for sharing that. I guess vibrations from the bike would cause that.

Still looking for someone who has never had numbness? I had a patch on my back that lasted about 6 months a while back but 20 years of sx which have never included any numbness!

[LATW]

I am dx'd and have not had on total limb go completely numb but I have had numbness in my face an chin. In my wrist, hand and little finger. Numbness in the midsection of my back coming around to my stomach. Numb patches in my right leg.  Numb sole of my foot...weird. Numb toes. Numbness that started in my neck that ran up to my ear lobes....weird.

Some people do have one total limb go numb but I guess not everyone.  I have loss of sensitivity on my right side that is very obvious with the pin test.  I had a splinter in my right foot that because infected and I had no idea until I ran my hand across the bottom of my foot applying lotion and felt a bump. I thought WOW that should have really been hurting me.

The other area that shows significant loss of sensitivity is the right side of my face. I can feel touch on that side of my face but can not feel a tickle or a pin pr..k

don't know if that helps or not. Everything is so different and you will drive yourself nuts trying to compare symptoms.  It causes me to start doubting.  Not a good thing.  I am starting to stay off of the boards a lot so I do not stress myself out.  

LA dx'd Feb 2008 going from Avonex to Beta.  Now using a cane, walker, and foot braces for foot drop. :(

[LATW]

One odd symptom I have had recently is scratching an itch on the inside of my leg and feeling is on the outside of my leg! Crazy.

My MS doctor said it is happening because of a flare that I must have recently had and the nerves are now miscommunicating. So fun.

[PatHC]

Thanks for sharing that, I had the numb patch on the back, sounds similar to yours but no other numbness at all either full limb of otherwise.

I know comparing sx is a silly thing to do with this ugly beast but it would be nice to know I am not the only one. I did have some lack of sensitivity in the left leg in the neuro exam but that is so subjective.

Thanks for getting back to me.

Is there anyone on the boards dx with no numbness though?

Pat