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Symptom Variability

PostPosted: Mon Mar 27, 2006 2:38 pm
by relbling
Does this happen to my fellow sufferers? My symtoms seem to vary from day to day and even throughout the day. My weakness increases, decreases and increases again throughout the day. I can have good days where my arm weakness, is minimal and there is no tingling in my hands. I can then also have days where my arm weakness is more severe (it's a little bit difficult to type this right now) and others where they seem almost normal. Spasticity in my arms and legs comes and goes. I'm sorry if this is an obvious question, but I'm only 2 months into this and I'm not getting any support from my neuro.

By the way, I have a C4-C5 lesion. I'm currently on a short term 20mg Prednizone treatment. I experience weakness in my arms and legs, Clonus in my arms and legs, mostly on my right side for both. L'hermitte sign, spasticity in my forearm (I know it's the ulnar nerve) and shin. Praise God that I am ambulatory. TIA for any help.


PostPosted: Mon Mar 27, 2006 4:35 pm
by courtneysmom
Mine have changed over time....and with circumstances. I seem to have a baseline of where I am all the time and then with new circumstances and other variables I get various things that worsen. Also I have had some new things pop up at times over the past two years.

PostPosted: Mon Mar 27, 2006 4:36 pm
by Carolyn Sunday
My symptoms change more than a drag queen on broadway!

PostPosted: Mon Mar 27, 2006 7:51 pm
by confused
LOL Carolyn! What color dress you wearing today? I'm wearing "leg pain lilac!" It has really tight stockings with it and knives that dangle underneath the skirt! And I can't seem to get this darn dress off!

Seriously though, my sx due sway a little from time to time, usually overdoing it, pms, illness. Worse at the end of the day and at night, when I have nothing to distract myself. But I swear I'm cyclical with this, every 3-5months and BAM hit with a big one. Mar, June, Sept (long hit, lasted 3mos) and maybe now?

Hang tight Ross, it's a bumpy ride that will try to throw you off at times. 2 months is pretty early into it. Give yourself time to adjust.


PostPosted: Mon Mar 27, 2006 9:05 pm
by Lynne
I find my symptoms change with the weather.

PostPosted: Tue Mar 28, 2006 6:57 am
by marieke
I answered steady. They are more-or-less. They change with my menstrual cycle and the weather, but not drastically. I have off dasy where I am more spastic, but it never lasts for too long. Pain varies, but never for long either... it's hard to say steady vs. change. I mean, how much change are we talking about...?
marieke (TM since 18/03/04)

PostPosted: Fri Mar 31, 2006 2:53 pm
by jmiller
Hello Ross, I was diagnosed with TM, or so the Dr's at MCV in VA think, on Feb. 20, 2006. I started with tingling in the feet and then went numb and then moved all the way up to the abdomen. I was completely paralyzed for 1 1/2 weeks. They put me on IV steriods and then pill steriods and am taking BetaSeron every other day. I feel tingling all the time but when I get up to walk somewhere it worsens. By the time I get to the place that I want to go I am completely numb where I was paralyzed and feel light headedness and SOB. I started having Blackouts when I got home from the hospital and the Dr's do not know what they are going to do at this time for me. Hang in there though. I have found out that stress will make it worst and also heat or so some my PT have told me and since they told me that I have found it to be true. What I have found to help me when my problem gets worst is to stop deep breaths and just pray to the good Lord above. And after a few minutes the numbness goes away and the tingling gets so I can move again. Hang in there though it will get better or so I have to tell myself.

PostPosted: Tue Apr 18, 2006 4:24 am
by Dawn (UK, Birmingham)
I have had TM for 6 years now and my symptons over the last few months have been crazy. If i cant breath for the pain, my kegs are jumping all over the place or i am just so tired and wore out i cant get the energy togerther to move. Am doing gentle exercise as normal but even that tires me. I amjust waiting to see my neuro, so see what cheerful things they have to say!
Its staring to get me down and i know my husband and family are worrying like crazy they feel so helpless that they cant help me and i feel so helpless for making them feel that way.

Oh well, thanks for listening i think i should go back to work now.


Re: Symptom Variability

PostPosted: Thu Dec 18, 2008 9:40 am
by rmc1028
Thank God for you guys! Please allow me a moment to vent!
Had a major, immediate "attack" about 4 years ago and was diagnosed with MS. Spend three years self-injecting and, with each MRI - no progression. I was "reclassified" as having TM about 8 months ago. Wonderful about not having more needles. But seems with TM - I'm on my own I'm classic TM....immediate onset, significant recovery over the first 3 months....and now I'm mobile but limited. Numb/tingling legs and feet (esp on the left) and intense tightness around my torso/trunk. The symptoms never go away but vary from annoying to pretty bad (limiting.) Sometime it gets so tight my breathing seems affected, as though my diaphram is clenched. Can't figure out if I'm tensed-up like I'm holding in my stomach...or the opposite (distended). My stomach is always tight/ a pregnant women. I explain to friends and family, but they really can't relate. Can you offer me any advice/suggestions? Thanks! Rosie

Re: Symptom Variability

PostPosted: Thu Dec 18, 2008 11:36 am
by Sew
Are you taking any medications. Baclofen, Zanaflex are the most common to help relieve the symptoms you are describing. These meds are for spasticity.

Other meds for pain the hot and cold burning sensations are Neurontin or Lyrica.

Ask your neuro for advice on taking these meds.

Heather in Calgary

Re: Symptom Variability

PostPosted: Mon Dec 22, 2008 11:35 am
by marieblond
the symptoms change when I have an infect of urinary passage, the spastic growths.

because I regret chemical medicine I take a day between 1 and 5 pills, try to translate - moment - valerian and common hop with the surprising result, that I don´t need gabapentin. I have it for the worst case. but I work so hard, that I hope not to meet this worst case.

best changes come under weekly use of thera band training and the socalled leg-press in gym.
I become laxly (??) by weekly aqua power and bathing in salt-water of about 38 degr. centigrade.

Re: Symptom Variability

PostPosted: Mon Jan 26, 2009 4:26 pm
by tmcmillin
Haven't posted in a long time--- been too busy as I've recovered a lot! Diagnosed in May 2007 after sudden onset - clear MRI, but guess possible lesion at T-10. Now 100% functional, not 100% comfortable :)

Yes, my symptoms vary some, but only enough to be annoying and tiring. I live in the central US and the weather temperature fluxuates dramatically. One day it is 15degreesF, the next could be 60degrees F. This affects my symptoms the most. I have an awful time with my legs feeling cold and then I can't warm them up! 2 hours under a pile of blankets and my hips can still feel cold! Do other people feel this? The skin can be warm, but I am oooohhhh sooooo cold. I do take 1800mg of Gabapentin per day. The spasticity increases when I go out in the cold although the muscles are not actually tight--- they just feel tight--- ugh! It is exhausting!

I work as a home health care speech therapist so I am in and out of my car and these cold days are about to drive me insane! My legs are tight, their cold, nope now they are not as tight, but still cold, now they are hot --- is there a smiley face for going insane! @-)

I also hate pants as my legs are hypersensitive to light touch. Tight stockings/tights help with reducing the hypersensitivity so I can deal with pants, but they obviously don't help with the tight feeling. 8-}

Can anyone relate?

Re: Symptom Variability

PostPosted: Tue Jan 27, 2009 8:51 am
by marieke
Everything you describe I can relate too. Yup, it's all part of the neuropathic pain/sensations. Cold makes spasticity worse, takes forever to warm up...! I live in Quebec Canada. FREAZING COLD 6 months of the year! Oh JOY! I need to move someplace warm... Hawaii anyone?

Re: Symptom Variability

PostPosted: Tue Jan 27, 2009 9:23 am
by Sew

I'm with you on the warmer climate thing.
Why doesn't your picture show on here anymore?

Heather in Calgary

Re: Symptom Variability

PostPosted: Tue Jan 27, 2009 10:33 am
by tmcmillin
I'm not glad that you experience the same symptoms, but glad to know that someone can relate. I have a friend with MS and she said that she doesn't get those feelings and just kind of looks at me strange. I was kind of surprised that she didn't. I guess that i don't understand how MS and TM differ.

Okay, so when are we all moving to Hawaii??!!
Thanks for your reply,