RE: Need Info, new to this!

Kathy Dunn (kathy.dunn(AT)scenictours.com)
Fri, 22 May 1998 11:17:46 +1000

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
> >