What do you say

[Terrie2008]

To: What do you say
Hi sorry if I'm being a pain need to find out another problem I'm having,
The tingling buzzing I'm getting is in different places all day long but sometimes the tingling gets worse and it runs right through my body, its horrible but the worse thing is when its happening i cry i feel really stupid and don't know what to say to people.

The feeling feels like I'm  loosing control off my body it only last a little while its so horrible
If anyone  gets this (I'm sure a lot of people do) how do you cope, what do you say when it happens.

Terrie

[wonko]

Hi Terrie,
I get that feeling often in public and can relate.  Like today, I am very uncomfortable, but I am also at work.  Not a good time/place to start balling for reasons that even I can't understand, let alone my collegues!

Take deep, calm, breaths.  I also like to remind myself that the feelings aren't "real."  There's no fire burning my arm, there's no weight on my leg, etc.  I try to think of the werid sensory things as being akin to the pain an amputee may feel in the lost limb.  My brain registers it, and I can feel hurt, but I am obviously in no clear and present danger, and it's ok to just stay calm and wait for it to pass.

If we let this stuff get to us, anything even resembling a normal life will be impossible.  I can understand that it is hard to go even seconds without wondering ???? WHATS HAPPENING TO ME??? Especially on bad symptom days.  But I've had enough tests done to know that while there are unanswered questions, I'm not about to explode or keel over.  I'd be doing myself a disservice if I stopped trying to go about my normal life.  

When I catch myself despairing over how long I've felt this way, over the unknown future of this, or any of the many other complicated issues surrounding my health, I do my best to STOP.  I may need to duck into the ladies room and have a moment of privacy  to collect, or at home, I may need to just change what I am doing and go pet one of my cats or admire things in my home that are meaningful to me.  And you know, sometimes those flooding thoughts come right back!  So I repeat the process, being patient with myself BUT not allowing myself to get too down.

The emotional roller coaster has slippery tracks!  Try to stay calm and level.  I'm a rookie on this forum, let's keep an eye out for more feedback on this.

Take care!

[jensequitur]

Terrie, there's not much to be done about it - you've just got to wait it out.  After I was diagnosed, all the weird tingling and buzzing, the vertigo and the head buzz, I could live with it a little better, knowing it wasn't a brain tumor or anything else weird.  

Much of that time I spent at my desk at work!  Buzz buzz, tingle tingle, whoops, gotta go down for a photo shoot, hope I don't fall over!  Severe vertigo, problems with my legs and arms... it wasn't fun!  I work as a graphic designer, so I'm fortunate that I don't spend my time standing up.  And they keep it really cold in the office.

Just remember that it could be worse.  Not to be a downer or anything, but the sensory symptoms are the least of your worries.  They're inconvenient and distracting, but they won't keep you from working or thinking clearly.  It's the cog fog and the muscle weakness that cause real problems.

[wonko]

You're not being a downer, just sharing your experience.  But speaking as one without diagnosis, and at least mostly sensory symtpoms, I DO find it has had great impact on my work.  Somedays keeping my concentration is nearly impossible.  Sometimes, even if I'm on a good roll, if a sensory symptom lights up, then my concentration cracks.  I'm in no way implying that sensory symptoms are the hardest to cope with, but I do think people have unique reactions to them.  There are obviously a lot of factors.

Oh, I DID have a question when I began this reply:  Can an individual distinguish for themselves if cognitive difficulties are primary or secondary?  I've debating posting this as its own thread, but am nervous about it.  I've chosen to think of my concentration problems as being a result of the other symtpoms, and not being a primary symptom.  But a trusted friend who knows how my work is suffering asked me:  Well, if your foot hurt but they were not sure why, would you still have this much trouble concentrating?  Anyway, I'd appreciate anyone's thoughts.

[Wobbly]

I have been off work since Feb 2007...and miss it so much.  I am an Office Assistant and have been for 18 years.... I can't stand staying home and loosing my independence.  

andie

[Wobbly]

sorry, I posted so quickly...I didn't say what I wanted too.

when I did work and had my spells, walked funny...couldn't speak properly...staff noticed and they all talked about it when I was around, I talked with my direct supervisor and told her that I would like to inform everyone what I have been going through...

Not Dx yet... so at one of our meetings, I talked about it and my supervisor let others know...so they didn't panic tooooo much when I fell over..they would just call 911...

andie

[jensequitur]

Wonko, my neuro told me that my cognitive problems were the result of 'distraction' because of my sensory symptoms.  That's when I began to be worried about the credentials of my neuro, because 45% of MS patients suffer from cognitive impairment.  My cog fog had all the hallmarks of classic MS impairment, including the problem-solving, the word-finding, using the wrong phrase, etc.  For a while I didn't talk very much because I wasn't sure how to say what I meant, or because I knew it wouldn't come out right.

So if you're concerned about your cognitive problems, ask for a neuro-psych exam.  I did, finally, and I'm scheduled for one on June 30th.  I'm feeling much better now, but I think I have some residual impairment.   So the results of that exam will be my current status, not the state of my mind when I'm in relapse... and I hope I don't have another flare before then!

[sllowe]

Hi Terrie,

How you been doing w/all this?  You get a break from it at all? Slightly?

Let us know if you can,

-SL

[Terrie2008]

Hello silowe

I've been doing just the same really, Its always there.. less in the mornings but gets worse as the day goes on.

I have put wonko's advice into action

"Take deep, calm, breaths.  I also like to remind myself that the feelings aren't "real." "

this helps me to cope better, and haven't burst into tears yet.

You may notice from the time of this post that I'm not in bed sleeping, I sort of had a bad case of shivering, well it was like shivering but started with my back muscles going tight, then down my back and into my arms and legs.. So I cured it by getting up and having a cup of tea with 1 1/2 hot cross buns.

I'm now going to try and go to sleep, if I don't I will have to attack the contents of the fridge (I blame the steroids, will have to find something / someone else to blame wh

[Terrie2008]

when I stop taking them.

[wonko]

I come here a lot when my symptoms wake/keep me up.  Its another great coping mechanism, and fat free!  I think we as a forum span enough time zones and keep odd enough hours to always have someone close by, which can be comforting during all of the weirdness.

Take care!

[southygirl]

just a quick post to let you know I can relate, 4mths and stil tingling and dont know whats wrong,its not as if you can show people whats going on eg broken arm or leg!anyway its 10 58 in the morning here got to go out but back later if you want to talk.


theresa

[Terrie2008]

Thank you so much for your advice.

Southgirl any time you would like a chat Im usually about thank you for your message.


Terrie