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Old 04-08-2008, 07:26 PM #11
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Cherie - they do take a while to go away. The last time it was this bad was about a year ago. The only thing I have below my hips is increased spasticity and sensitivity to touch. I am taking that as a good thing.

The uro appointment for today was to get some baseline studies done. I had made the appt several weeks ago. It just happens to be while I am in a flare. I definitely have a neurogenic bladder (and bowel) and they are going to do the CMG tomorrow, kidney ultrasound on Thursday, and a cystoscopy on the 29th. They will also send the urine sample over for a culture to make sure I don't have an infection. (I don't think I do as I don't have symptoms of that)

Barb - Like you, this was one of my presenting symptoms several years ago. It took 3 years for them to diagnose me with MS (although my PCP suspected it right along). I have to say as the years go by the discomfort is almost constant. (Thank God for Neurontin.) The funny thing though is that I forget what it feels like when it is really bad. Kind of like childbirth. You forget the pain.

Frank - I hope you get though yours quickly as well. The neuro actually did mark it and it follows right along the lines of about T5 through T7 curving down just like the nerves. (Cherie, I think it was you that posted that picture wasn't it?) Hang in there cyber-flare-brother.
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Old 04-08-2008, 07:31 PM #12
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Quote:
Originally Posted by suzyqz_2007 View Post
i have days where i can feel wonderful one minute then absolutely awful the next. (
It's so frustrating isn't it? You can't fully plan. Everything is tentative. UGH!

I too had numerous tests done including an EGD which showed sensitivity of the nerves which was causing stomach spasms. Now, thanks to all my board buds and my new neuro, I understand what is causing all of this.
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Old 04-08-2008, 07:47 PM #13
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I just wanted to thank you for explaining this.

I have numerous lesions on the brain (at least 13) and I have had an mri of the spine but it didn't show any lesions...is it still possible to feel the "hug"?

You are welcome.

Spinal lesions can hide very well, but I think you have to have them to get the hug. Most often there will be considerable "numbness" (that hurts a lot ) too.

Frank/Barb, I've had the split too. So far I've had it where:

- one side went numb from my foot to mid-breast, then a week later the other side did the same thing. Until it did though, I could draw a line down the center (left side only) and through my breast (bottom numb only) that was numb/not numb. This did not include my hands.
- both feet went numb, and it progressed to above my breasts; same on either side. This time it included my hands and tips of my ears. It also affected several internal organs.
- one side only, starting in the chest and working it's way down to include everything to foot (eventually)
- torso for a few weeks (only to my hips), then my mouth, then patches in the legs, then feet (but still not my hips). As the torso was letting up, the legs were getting worse, then the torso took off again to include my neck, scalp, ears.

Life is like a box of chocolates . . .

Cherie
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Old 04-08-2008, 07:54 PM #14
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Chocolate? Did you say chocolate? I'd like some. LOL.

It definitely affects the internal organs. Not fun. I am still on a smoothie diet. LOL.

Numbness, tingling, inflammation, spasms, and extreme sensitivity to touch are some of the things that I can think of that go along with this.
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Old 04-08-2008, 08:10 PM #15
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yeah cherie that was kind of weird Barb explained it so well, I was trying about 3 weeks ago to explain it to the doc, I didnt know that is the MS HUG now I do , I always just say tightness in the chest and difficult breathing,

thats what made me think of it too, I used the phrase to the neuro draw a line from here to here on front and back of my body,

If I could ask you something cherie, i mentioned it around 4 am this morning on here and dont remember where there's a big surprise.

The period inbetween flares, relapse's whatever term you want to use, is there any terminology for the false sense of security between flares, I would like to read any info about it from a pysch aspect.

I will try to explain this, so here goes, its almost like I forgot some of my SX? does that make sense or am i just blocking it out, sort of like a false security like oh good flare up is gone so is MS. this has just been such a weird flare, every time my flares have always been on left side, and this time its all backwards, its all on right side, I pretty much have myself convinced from a mental standpoint I am so off guard this time because I have put the MS far enough back in my mind and dealt with other issues and centered on those instead, but not sure I am that bright

would be interested in reading about this, it has to be a common thread to MS that false sense of oh good its finally gone. sorry to babble

Flare Sis you hang in there too, first one out of it, gets to drive the little red corvette
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Old 04-08-2008, 08:13 PM #16
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Thanks for the great explanation, Cherie

AND, T~~ feel better soon, OK>
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Old 04-08-2008, 09:06 PM #17
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Frank - I have that false sense a lot. I also think we forget about the pain. Like my last flare, I had TN but I can't remember the pain and facial spasms. When I get it again, I'll remember. Again, like childbirth. We forget the pain. I think if we didn't we would have less children.
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Old 04-08-2008, 09:09 PM #18
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I'll apologise in advance here Tkrik, as I'm hijacking your thread for just a minute. Please forgive me. I hope you don't mind just this once, seeing my following question is for Cherie and the topic is so similar to your own.

I too thank you Cherie for that great explanation....but....I've been suffering from something that's more like acute short stabs of pain in the intercostral spaces/muscles.

In your explanation you mentioned the following, and I've only quoted the relevant part from your post...

Quote:
Originally Posted by lady_express_44 View Post
What Does It Feel Like?

- Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure....


On another website I'd asked about the rib pain that I suffer because it really is debillitating while it lasts, but as it's only for a few seconds at a time, no-one seems to think it's anything to be concerned about.

I did break 4 ribs in a fall a few years ago in that same area, and my pain is now said by other MSers who I've asked, to be solely due to spasms in the Trigger Points and that I should see a Myofacial Pain Therapist! (I've actually not heard of one here in Australia)

My own doctor has dismissed my complaints of pain in the ribs when I mention it, even though the pain is agonising and makes me scream out on movement. He says that I probably trapped a nerve during the bone healing process.

Could this old injury be acting as a trigger for MS pain or the hug, or is it more likely to be due to the answers I've already been given as above.

Thank you Cherie if you reply, and thank you Tkrik for allowing me to hijack just this once.
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Old 04-08-2008, 09:18 PM #19
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Originally Posted by Koala77 View Post
I'm hijacking your thread for just a minute. Please forgive me.
Hijack away Koala. I never worry about hijacks as they can be really positive hijacks. This thread seems to be opening quite a bit of good discussion and I am all for it.

Cherie and I have had discussions on the hug before and she has lots of knowledge as well as experience with the hug. She has been a great resource for me regarding this issue.
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Old 04-08-2008, 10:54 PM #20
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It definitely affects the internal organs. Not fun. I am still on a smoothie diet. LOL.

Numbness, tingling, inflammation, spasms, and extreme sensitivity to touch are some of the things that I can think of that go along with this.

I was thinking about this the other day T, and I really hate eating when I get the numbness with the hug. I think it expands my skin in some small way, and then the sensation is much worse (just like when we move or do virtually anything). I also feel sick to my stomach, but I think that is a bit of mind over matter (because I know it will hurt to eat).

You described the sensations very well, BTW. Sometimes is also hard to get my breath . . . like the lungs don't expand enough. I also feel as though I have no muscle what-so-ever in my torso . . . I couldn't hold in my stomach if my life depended on it.

Cherie
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