if i were to advise i would say help when you can, be patient when you can't,,and be very prone to listen.
love is the most important thing in this mess. ________________________________ From: Tracy Lea Bell <[email protected]> To: Elizabeth Clark <[email protected]> Cc: Janice Nichols <[email protected]>; "<[email protected]>" <[email protected]>; Robert Pall <[email protected]> Sent: Sunday, January 15, 2012 2:51 PM Subject: Re: [TMIC] Is it really so important to know? I realize that I am not the one that has TM but joined this support group because of my mom, you all have been amazing for me! Mom was just diagnosed with sleep apnea and myanethia gravis as well! These auto immune diseases are so devastating and very devastating to to me to watch my mom go through. Any advise!? Sent from my IPhone On Jan 15, 2012, at 1:30 PM, Elizabeth Clark <[email protected]> wrote: >While I agree, for the most part, about getting on with our lives with what we have, I also have a desire to know ‘the cause’ for the following reasons… > >Since contracting TM almost 6 years ago and discovering it is an auto-immune condition, my sister has been diagnosed with two different auto-immune conditions – Shingles (about 4 yrs. ago) and Celiac (gluten intolerance, just this last year). > >My mother has had three auto-immune conditions – Rheumatoid Arthritis, Temporal Arteritis (inflammation of blood vessels in arteries of the head, about 5 yrs. ago) and Alopecia (hair loss – two yrs. ago). > >In addition to TM, and though not considered an auto-immune condition, I also have Scoliosis – ‘idiopathic’ like my TM. > >Because of all of this, I worry about my two children developing any of the same – or other – auto-immune conditions at some point in their lives. I’d like to know there is some way in the near future to predict and/or prevent that happening. At 21 and 22, they’ve passed the ‘adolescent scoliosis’ age of 10-13 yrs, but my sister and I weren’t dx’d with the rest until our 50’s and my mother’s began in her 70’s. > >I’m sure this has occurred to other TM’ers who worry about having passed this or some other condition on to their children. Is it just genetics and was never realized years before, or is it environmental or related to all the processed food we eat that’s affected the depletion of vital vitamins and minerals our bodies need to be healthy? > >Whatever the cause, I want to know. In the meantime, I do what I can with what I have to lead the best life possible. > >Betty >(in Northern California) > > >________________________________ > >From:Janice Nichols [mailto:[email protected]] >Sent: Sunday, January 15, 2012 10:03 AM >To: [email protected]; Robert Pall >Subject: Re: [TMIC] Is it really so important to know? > >Rob, I agree with you 100%. I admit I am really curious as to the “why” of it, but am getting used to my new life and am adjusting to most of it. All we can do, at this point, is treat the symptoms >and share successes with the other TM’ers. Who knows, it just might help someone else - as I suspect has happened fairly often. >Janice > > >From:Robert Pall >Sent:Sunday, January 15, 2012 11:12 AM >To:[email protected] >Subject:[TMIC] Is it really so important to know? > >I have had TM for more than 14 years and I have gone to the best Doctors (Dr. Kerr). In this group as well as some of the other facebook groups there seems to be a preoccupation with trying to find the cause that brought TM into our lives. I certainly understand the importance of medical researchers looking for these answers but I don't understand why it is so important for us to have a definitive answer as to why we were unlucky enough to contact TM. >I am a layman when it comes to our condition. I see my neuro twice a year basically for pain management. I do not waste my time trying to answer a question for which there is no answer. >We were just unlucky enough to have hit the million to one lottery....why us..was it stress, was it a flu shot, was it just a common cold that our immune system attacked improperly???? >God only knows ....and try as we might how are we supposed to figure out the cause when none of our doctors have been able to? > >For me the most important things that a support group like ours can supply is the medications that have been sucessful, and or the doctors that we have confidence in. I like all of you pray for a cure....but at my age (64) I pray it does not get worse and that new medications might make me feel better. > >Ok I am starting to ramble.... > >All the best to all! >Rob in New Jersey
