----------
> From: Kathy Dunn <kathy.dunn(AT)scenictours.com>
> To: 'Weissman, Peter' <PWeissman(AT)Richter.ca>; tmic-list(AT)eskimo.com
'MTripimcca' <MTripimcca(AT)aol.com>
> Subject: RE: Need Info, new to this!
> Date: Thursday, May 21, 1998 8:17 PM
>
> Hi, my name is Kathy and I'm writing on behalf of my niece Hayley who
> suffers with TM. She collasped on April 17 1996, 3 days before her 10th
> birthday. There were no signs of anything until she collasped - she had
> severe pains in her chest and back and felt sick, 10 minutes later her
> left leg went numb and she fell and couldn't move, within 3 hours she
> was totally paralized from her chest down (T4).She did lose movement and
> feeling in her arms but that came back, although not to full strength.
> Hayley's lungs have been affected 75% also, though she has never used a
> respirator. We can't understand why this has affected her breathing - is
> it because her muscles are too weak to help her lungs? We don't know.
> Why has this ever happened????? We don't know.
> A couple of months down the track Hayley discovered she could move her
> big toe on her right foot (the left side of her body is weaker than her
> right), but since then there has been no other improvement. Also, on
> top of everything else, Hayley has developed severe postural scoliosis
> and now has to wear a full body brace 24 hours a day to help prevent it
> getting worse. Eventually she will need an operation but the Dr does not
> like operating on childrens' spines and the brace is to prolong the
> inevitable. If the brace doesn't work she will evidently have the
> operation sooner. For over 2 years now Hayley and my family have
> struggled to come to terms with this tragedy. We have felt "left in the
> dark" because there is so little known about TM and no-one seems to be
> able to offer any explanations or suggestions on how to get through this
> and cope. There a so few cases here in Australia - about 15 we have been
> told. I am so grateful for the Internet. It was only a few days ago I
> discovered there was an Association set up on the net and that there was
> contact with other sufferers and to find out that Hayley and my family
> are not 'alone' . The last couple of days I have found out more about
> TM than what I have learned over the past 2 years. I must say that I am
> so proud of everyone that I have read about - you are all so courageous
> and spirited. It's good to see that none of you will let this thing beat
> you. I am hoping that by keeping intouch with people on the net, I may
> be able to help my niece to be more encouraged to get on with her life.
> I am telling her stories about all of you and about information I have
> read. I am so thrilled there is at last something I can do to help
> Hayley try an overcome her fears and help me overcome my helplessness.
> As yet we have not heard of any such support group or association in
> Australia that can help us. She has never met anyone else with TM. There
> hasn't even been any sort of counselling. My family feels so helpless
> and it's heartbreaking to watch Hayley and her parents go through this
> and not truly understand how it is affecting her. She has coped very
> well and I really admire her. Although she has had a really difficult
> year this year, with starting High School. Hayley was having a hard time
> fitting in and getting use to it. She became very depressed and
> withdrawn and none of us knew what to do to help her. We have tried to
> help her find an interest but had no luck. She was involved in disabled
> sports days but was never real happy about it and stopped going. She was
> a confident gymnist before this happened and seems not interested in any
> kind of sport now and I think it's because she knows she can't be like
> she use to be. She has keyboards but is not interested in playing them
> either. It's so hard to get her motivated - but I can understand that. I
> don't think I could just pick myself up in a hurry and get on with it.
> So therefore I have these questions - how can we get Hayley motivated
> and interested in life, and how do we teach this 12 year old she can
> still have a quality life?? I know as Maria said, a positive mental
> attitude will greatly help us all. Thank you for saying that. It helps
> both sufferers and non-sufferers.
>
> Cheers and best regards to everyone and keep smiling,
> Kathy
> Newcastle
> Australia.
>
> > -----Original Message-----
> > From: Weissman, Peter [SMTP:PWeissman(AT)Richter.ca]
> > Sent: Thursday, 21 May 1998 11:40 pm
> > To: tmic-list(AT)eskimo.com 'MTripimcca'
> > Subject: RE: Need Info, new to this!
> >
> > Maria:
> > I'm sorry to hear you are going through this terrible experience. I
> > have also been through it (although it never really ends, you do get
> > your self, and mind, into a comfortable space. I take Clomipramine
> > (similar to Amitriptiline) to help reduce my anxiety over the whole
> > situation. From what I know about the drugs, they usually take about
> > 4
> > weeks to reach their maximum potential. Even if the pain is not gone,
> > they will hopefully help you focus on the pain less and put things in
> > perspective.
> >
> > 41/2 years ago I had the similar symptoms to yours, numbness and
> > tingling in feet that moved up to my waist. I didn't have the pain
> > that
> > you described or as much upper body involvement. My neuro was a jerk
> > but after about 2 months of telling me that this is nothing serious he
> > said, he really thought it was MS. He sent me for a cervical MRI
> > which
> > showed a significant hernated disk at C5-C6 (causing spinal cord
> > compression) and some swelling of the cord in that location. My
> > diagnosis? Probably not MS, but as my jerky Neuro put it "it doesn't
> > mean you won't develop MS in the future". Talk about liability
> > protection. Anyhow I had to have the disk removed surgically by a
> > neurosurgeon and my vertebrae fused. The intention was to stop the
> > progressin of my symptoms, not necessarily reverse them. They did get
> > better, however, but every once in a while I have a flare up of my
> > numbness or tingling and this whole issue of MS? comes up again. I'm
> > going to see a new neuro who apparently is very good to see if he
> > thinkd
> > there is any reason to investigate the MS possibilty or not. Unless
> > there is something they can do to help me if it is MS, I'm not
> > interested in having any more tests. From what I understand, however,
> > there are some new drugs that reduce the symptoms of MS and help slow
> > the progression (Avonex, Beta-interferon).
> >
> > Anyhow, it seems too coincidental that my herniation was at the same
> > spot as my spinal cord lesion. What are the chances of having a
> > herniation causing compression and having a totally unrelated scar at
> > the same spot?
> >
> > Please feel free to email me at anytime if I can help you. I'm happy
> > to
> > chat. Just to let you know, my goal once the problems and
> > unceratinties
> > were forced upon me was to get ME into a comfortable state of mind so
> > that I could get on with life and stop feling sorry for myself.
> > Remember, everyone will be struck with something at sometime. I feel
> > fortunate that this isn't life threatening. After my surgery my wife
> > and I had a child. Number 2 is on the way and life is pretty good.
> > Sure, we're not naive kids anymore, but I think that's a good thing.
> > I
> > didn't develop this philosophy until I had agonized over the situation
> > for quite a while. I started taking the Clomipramine and it helped me
> > stop worrying and start living.
> >
> > As a side note, I also took small doses of Clonazepam when I had
> > anxiety
> > attacks. It really helped and it reduced my symptoms. Apparently it
> > calms the spinal cord down. Maybe this would help your pain and other
> > symptoms.
> >
> > Peter
> >
> >
> > > ----------
> > > From: MTripimcca[SMTP:MTripimcca(AT)aol.com]
> > > Sent: May 16, 1998 2:00 AM
> > > To: tmic-list(AT)eskimo.com
> > > Subject: Need Info, new to this!
> > >
> > > Hello Al,
> > > First I would like to thank Pat so very much for responding to me
> > > personally.
> > > Pat you offered me an awful lot. I felt quite relieved to know that
> > > the
> > > symptoms I am experiencing are somewhat similar to yours. For a
> > while
> > > I
> > > thought it was all in my head. Not to mention the fact that I was
> > > scared.
> > > Although I am still somewhat scared, I do know that it feels good to
> > > know I am
> > > not alone and that I can share and learn with you all. I have so
> > many
> > > questions and have been doing a lot of research now that I can type
> > > again. I
> > > first starting getting "symptoms" last summer. Numbness in my legs
> > > and arms
> > > and face. Then after about 2 months, I had pain under my right arm.
> > > I also
> > > had a toothache, and thought it was swollen lymph nodes. So I
> > didn't
> > > pay it
> > > much mind. Then the pain progressively got worse and lasted all the
> > > time. By
> > > January, I decided to see my GP, because my neuro kept telling me it
> > > was the
> > > meds and either switched meds or lowered dosages. You see, I also
> > > have
> > > epilepsy, so he could see no further than that. The GP originally
> > > thought it
> > > was a tumor under my arm, and when those results proved negative, he
> > > thought
> > > it was lymph nodes also. He put me on some antibiotic and some
> > other
> > > med,
> > > like an anti-inflammatory, and I developed this rash on my arms,
> > that
> > > were
> > > like chicken pox. My skin burned from the inside out. Went to the
> > ER
> > > and
> > > they thought it was an allergic reaction to one of the meds. Gave
> > me
> > > steroids
> > > thru an IV and sent me home. 2 days later, I contacted the worst
> > "flu"
> > > I had
> > > ever had. At least that is what the GP thought. The whole time my
> > > neuro was
> > > informed by me of all these symptoms, but yet did not see past the
> > > epilepsy.
> > > Went back to GP and he performed some neuro tests on me and kept me
> > in
> > > his
> > > office for 2 hours. Boy did I know there was something wrong. Sent
> > > me to the
> > > Dent clinic here and failed the same neuro tests as well. An MRI
> > > showed no
> > > lesions, yet he labeled it TM and had to have a spinal. Still
> > waiting
> > > for
> > > results, will take 5-6 weeks they say because they sent them to the
> > > Mayo
> > > Clinic. He thinks it is MS. Today, I am in pain but I can walk
> > again
> > > with a
> > > stable gait, and that makes me very happy. Hoping that my arms and
> > > hands will
> > > catch up to were they used to be. The Neuro said it was between
> > 5&6,
> > > whatever
> > > that means. I have a herniated disk there. He told me it is not on
> > a
> > > nerve,
> > > nor is it hitting my cord. Hence, he does not believe that is the
> > > cause. I
> > > have had back probs all my life. Slight curvature of my spine,
> > > fractured
> > > coccyx, and the disk prob. I am looking to learn what could have
> > > caused this,
> > > as well as what tests I should be getting. I want all test done,
> > from
> > > GP, GYN
> > > and Neuro. Is there other tests I should know about? My knew neuro
> > > tells me
> > > he has been practicing for over 20 years, and says he can count on
> > one
> > > hand
> > > how many cases he has seen of TM. So of course I am leary and also
> > > want the
> > > best treatment available. Is the a clinic that specifically treats
> > > TM? Are
> > > there things I can do homeopathically? And I would like more info
> > on
> > > the
> > > magnets I am reading about. Are they surgically implanted? Am
> > > currently
> > > taking amitryptilyne for about 3 weeks now, but does not seem to
> > help
> > > with the
> > > pain, unless of course it would be worse without it. Did a stint
> > with
> > > steroids, but again did not work? Could it because I only had to
> > take
> > > it for
> > > 6 days? And the three biggest thing on my mind are, will I
> > eventually
> > > be
> > > paralyzed, does it affect my life span, and is it hereditary? Well,
> > > that is
> > > all I can bombard you all with for now. Thanks so much for taking
> > the
> > > time to
> > > read this and I know a positive mental attitude will greatly help us
> > > all.
> > > God Bless,
> > > Maria
> > >