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Re: Symptom Variability

PostPosted: Tue Jan 27, 2009 1:21 pm
by marieke
Your friend with MS is just lucky.. she may not have that NOW but she may in the future. It depends on HOW her nerves were/are affected. Not everyone with TM gets it either. Hence, Symptom Variability! LOL

As for my picture on here.. I tried to change it and messed it up, NOW can't get it back! I am working on it (so is Jim..)

Re: Symptom Variability

PostPosted: Tue Jan 27, 2009 1:43 pm
by marieke
Fixed the avatar problem.. like my new one?

Re: Symptom Variability

PostPosted: Sat Jan 31, 2009 8:07 pm
by Shirley
Hi guys,
You all need to come here to NZ to live. Lovely climate, here in Hamilton we have a very temperate climate, the winters get down to Celcius 5 or 6, and the summers 24-28. We have a westerley breeze most of the time.

My symptoms don't really change, it's the fatigue that I find hard to take. Maybe when I retire I will feel more 'normal'

Keep warm up there

Re: Symptom Variability

PostPosted: Sun Feb 01, 2009 11:38 am
by Sew

I am going to have to come and live with you. That climate sounds WONDERFUL. I also have a cousin who lives in New Zealand. Only met her once. She is about 81 to my 63.

Hmm, really really do love your climate.


Re: Symptom Variability

PostPosted: Sun Feb 01, 2009 12:34 pm
by Hev

I haven't posted in ages but I do visit the site to see how people are and to reassure myself that what I am experiencing is relatively 'normal'. In the scheme of things my symptoms are minor.

It is now over 2 years since my onset (Oct 06). I only ever went numb to my knees and my symptoms all seemed to be below the knees except for bladder weakness. My consultant was sure I would make a full recovery. I have been on Gabapentin since April 2007, building up to 1800mg/day, then in Mar 08 I was given amytriptilene (sorry about spelling) 10mg. Am now on 30mg and trying to take less Gabapentin but take 1000 - 1200 mg/day. My symptoms are mostly pain/burning in my feet, or pain/really cold feet. I work in an office but wear boots most of the time to keep my feet warm, and still need soft soles. I cannot stand for long periods of time without increasing pain in my feet, sometimes to the point of being unable to stay on them, but I can go shopping etc., I just pace myself. Thank heavens for Starbucks!

I am really lucky that I was not more severely struck by this and can carry on my normal life but with adjustments for the limitations set by TM and ignoring it as much as I can (whilst taking care to take the meds!) Most people don't know there is anything wrong with me as I am able to sit a lot at work so they don't see me walking like a really old lady!

I wish I knew what triggers the variability in pain - I know about the usual weather, PMS etc but sometimes it just seems to be worse for the heck of it, as if the TM is sticking its head up, waving and saying 'I'm still here, you know!' I also seem to be suffering far more from fatigue now than a year ago.

I didn't expect to be like this now - I believed in that full recovery I was predicted! :) But, it's much better to look forward than back; tomorrow is another day.


Re: Symptom Variability

PostPosted: Thu Jul 16, 2009 7:04 pm
by Dave Wheeler
Ok well it has been years since I have been on the site but things have changes for me recently. I am one of the senior TMers here, my original diagnosis was way back in 1981 with the onset at the end of 1980, they didn't know what it was at the time of my onset. But anyways for most of my life I have done pretty well, atrophied muscles, but ambulatory, weak bladder and bowels but kept them mostly controlled. Untill the past six months everything has been pretty good, I have felt decreasing strength but didn't really think much about it, about 2/12 weeks ago I bottomed out, feeling totally fatigued all the time and feeling a significant loss of strength in my arms and legs, the legs are also shaking now when I walk, my new neuro who I just met today is stumped. I have already have numerous blood tests and MRI of the spine, and CTs with no real results, so now more blood tests and another MRI of the brain is comming up.
This is really different for me, I have always been kind of a loner in the TM community since I seemed to be better off than most. I don't have pain, no tingling or other symptoms that I read on here, I rarely even took any meds, only took Flomax for the bladder and requip for RLS, and haven't taken those for several months due to a lack in insurance, now I am take Dexamethasone for some strength but honestly not feeling much yet (just started taking it yesterday).
I guess that I am reintroducing myself since now it seems I may have problems I didn't have before and might need some answers or suggestions, for me my TM has been more of a nusense than anything in my life but now with the new problems it is having severely negative rsults for me, I have never been this worried before for myself and my family and our future.
So hello everyone I look forward to speaking with everyone, hopefully I can give back with what I am sure will many great posts and sugestions.


Re: Symptom Variability

PostPosted: Fri Jul 17, 2009 2:34 pm
by Sew
Hi Dave,

Heather in Calgary Alberta here. I've had TM now for almost 6 yrs.

Your changes sure are not anything I've heard about either. Usually you have what you are left with after the 2 yr mark.

I know that I always say and so do a lot of others on here that we need to remember that there are always other conditions that can affect us just as if we were not disabled with TM in the first place.

I know that there is the new medication Lyrica that I tried and after 10 days my legs and feet were so badly swollen that I had to go off of it. In my family there is a lot of heart disease and high blood pressure also strokes. So I certainly did not need to have the added fluid build-up in my body due to the medication. I knew that this could be a side effect of the Lyrica.
However it is also a little indication that you need to remember all the other ailments that can affect us as well.

I hope that the neuro keeps on searching for you. Hopefully too the new MRI will point him in a direction.

Please keep in touch here and let us know how you make out. I'm sure that there will be others to sign in and give an opinion here too.

Heather in Calgary (where we FINALLY have some warmth today - maybe it will FINALLY be summer here - LOL)

Re: Symptom Variability

PostPosted: Fri Jul 24, 2009 11:02 am
by Dave Wheeler
Ok all update time, 1 mri of the spine, 1 to go yet of the brain, numerous blood tests, 3 ct scans and so far absolutely no explaination of what is going on with me. Only drug so far they have me on is dexamethazone 4mg but it doesn't seem to be doing much for me. Still shaking or tremors depends on your view point, have to make each action deliberate and thought out so everything takes a little longer now, haven't driven in 2 weeks or been to work either. Been trying to track symptoms if something new or different happens but pretty much same thing everyday, fatigue, shaking, weakness, concentration problems, and this kind of "tunnel" vision is best I can describe. I can literally feel energy being drained from me at times, it's an actual sensation. I am guessing that this has little if nothing to do with TM, but figuired it didn't hurt to see if anything sounded similar to others.

I would be happy to respond to TM questions though since I dealt with it for basically my whole life, and used to do pretty good. It might take a bit to respond but I will, took about 20 minutes to type this lol.

Have a good day all,


Re: Symptom Variability

PostPosted: Sun Jul 26, 2009 4:06 am
by heatherss99
Hawaii? Me too, please. Could we have a seminar/conference there?

Re: Symptom Variability

PostPosted: Sat Nov 14, 2009 7:15 pm
by still standing
Wow, I must have needed to get a lot out today. I have posted a few times today. This is in itself a change - wanting to post/talk about it. My symtoms change day to day. Factors I ask myself: DId I do more today/yesterday - could I be a little fatigued?? did I take my meds as I should?? did I allow someone to push my buttons?? :-? , do I feel a little sorry for myself and I am feeling more L-) , What's the weather like??? And is there a combination of all the above?? Whatever it is, life is a change day to day. :ymparty: and still I am giving thanks 'cause I am STILL STANDING!