Online chat

discuss symptoms related to arms, legs, torso and neck; solutions and what works for you

Moderators: marieke, jlubin

Based on GMT time — which time would best suit you for online chat?

Weekday morning
Weekday afternoon
Weekday evening
Friday evening
Saturday morning
Saturday afternoon
Saturday evening
Sunday morning
Sunday afternoon
Sunday evening
Total votes : 70

Re: Online chat

Postby wilky50 » Sat Mar 26, 2011 1:44 am

I live in leeds in Yorkshire, England.
Most days I have a quick browse and pick up on peoples posts, there are some very good suggestions and I think that you have to find what really works for you.
Yesterday I overdid it and today I`m suffering, I didn`t get the required rest through the day.

Take care

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Re: Online chat

Postby Scoobs » Sat Mar 26, 2011 7:54 am

Hi all, nice work on setting this up May.

I missed last Sat. night due to unexpected visitors for dinner.

Hope all are well and hope to catch up with some of you in the chat.

Has been a while since last posting. Will update 'my' thread shortly.

Life is like riding a bicycle - in order to keep your balance, you must keep moving.
Albert Einstein
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Re: Online chat

Postby lauriem225 » Sun Mar 27, 2011 3:44 pm

Hi All,
Thanks for taking the time to do all this. I should be around some of the times the next few weeks so I'm going to try to get my calendar reminders on.
Georgia, USA
TM since 11/30/2010

patiently waiting to dive...
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Re: Online chat

Postby Louise E » Sun Mar 27, 2011 10:29 pm

Hi May
Thanks for your work in trying to set this up. I will try and participate when I can. I am trying to work out the right time here in Australia and also trying to take into account that 'daylight saving' is being phased out in various states over the next 4 weeks. Any way some times I am awake at odd hours when I can't sleep so I may even manage to join in even if it is some time during the night here.
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Re:My dad has been fighting TM for 1 year so far

Postby chippergirl57 » Sun Sep 25, 2011 10:50 pm

I am new here.I'm trying to find some support for my dad(Harold Foutz) who was knocked down by this disease a year ago.
He's been in the bed for a year now,still unable to walk on his own. I hear him talk about the numbness and tingling in his hands.He says his hands feel like they're dead.He tries to get up and into his wheel chair as oft as he can,but can't sit for just a short time before this head starts flopping over to one side because his neck is weak,and can hardly hold his head up,his shoulders start hurting bad and he feels miserable in his abdomen with pain and gas. He has lots of bladder infections from having to use a catheter.He's not got control of his urine and bowel functions.
My dad was always a strong man,used to doing carpenter work,going fishing or hunting and now is not able to have much in his life to look forward to. He has a lot of depression lately,which is quite understandable. It's so hard for me to see my dad this way,in so much pain!
He had rheumatoid arthritis before he got clobbered by this TM. I am his oldest child.I'm married with one grown son,and have had my own struggles with rheumatoid arthritis that started about 7 years ago.We both have had Sjorgren's Syndrome.
I'm hoping that I will not get clobbered by this as well because I pretty much have to paddle my own canoe here. It doesn't seem like my dad's doctors are doing very much of anything for him these days,and it makes me so mad.What can I do to help him? Annette Foutz Forbes
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Re: Online chat

Postby Shirley » Mon Sep 26, 2011 1:05 am

Hello Chippergirl,
I'm so sorry you had to contact us at all, this is the forum that noone wants to be in, but we have a wealth of support. Firstly, where do you and your Dad reside? I'm in New Zealand and things could be alot different here as far as support services are concerned.
Your dad is obviously at home, is your mum around? Does he have district nurses or any home help come in the home? Is he still having PT or OT?
There is such a lot of questions.
There is quite a lot of support on Facebook. I belong to 3 groups there, just put Transverse Myelitis in the search box and you will be taken straight to them. You have 2 autoimmune illnesses of your own, it doesn't mean you will get TM, it means that your family is predisposed to autoimmune illnesses. My Mum had oesteoarthritis and Diabetes. I am pre-diabetic and have had TM, so we have to accept our lot in life don't we?

There are support groups all over the world from this site, so again it depends where you are on who to get in contact with.

Take Care
Keep well


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Re: Online chat

Postby jmaygers » Mon Sep 26, 2011 5:34 am

Please feel free to send me a private message, Annette. There is a specialist here at Hopkins who specializes in Sjogren's and TM. His name is Julius Birnbaum and he is both a neurologist and a rheumatologist. Might be worth consulting.
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