Siblings with MS

Multiple Sclerosis
#1

Hi, I’m Kate (29) and I’m new to the site. I was diagnosed with MS on July 17, 2001. My older sister (36) was diagnosed with MS 10 years ago.

I’m wondering if anyone that has MS also has a sibling with the same condition. Do you share the same symptoms? How do you support each other?

What are your thoughts on treatments such as Avonex, Rebif, Copaxone, Novantrone (sp?) and chemo? My sister, by the way, has done all of the above treatments with no improvement. I stopped all treatments three years ago and have remained the same health-wise. She’s deteriorated. She now has a Baclofen-Morphine pump - which doesn’t work to alleviate any pain. Turns out, her pain doc said, that the pump doesn’t work on MS patients. Go figure!

I look forward to your thoughts, comments, and stories.

All the best to you and yours…

  • Kate
#2

Regarding the Beclofen pump, the pump is first tested
on the patient using a test dose and is then used to
dispense more Beclofen than a person can typicaly
tolerate orally without the side effects. The pump is
installed such that the medicine is administered in
the interthecal sac area where it is absorbed. perhaps
when the pump is secondarilly using for morphine, it
doesn’t work well for a patient with MS. He may have
been referring to that most pain that MS patients feel
is nerve pain and is better treated with things like
neurontin, tegretol, depakote, others (none of which
btw work for me)

my experience was I failed both Avonex and Copaxone
after 8 months on each with rapidly relapsing form of
MS during the time frame. I was recently treated with
IVIG for 5 days and Novantrone after a severe relapse
and had a good experience except my white blood counts
dropped post novantrone. I may be getting another
infusion in 2 more months or 3 months apart. i had an
allergic anaphlaytic response to tysabri. I used low
dose naltrexone (LDN) for 2 year with much less
relapses but stopped after the mega relapse last month
and pain meds are temp required still now 30 days post
relapse. IVIG is used when solumedrol is not indicated
and Novantrone typically used with worsening relapsing
MS as opposed to first line.

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Hi, I’m Kate (29) and I’m new to the site. I was
diagnosed with MS on July 17, 2001. My older sister
(36) was diagnosed with MS 10 years ago.

I’m wondering if anyone that has MS also has a
sibling with the same condition. Do you share the
same symptoms? How do you support each other?

What are your thoughts on treatments such as Avonex,
Rebif, Copaxone, Novantrone (sp?) and chemo? My
sister, by the way, has done all of the above
treatments with no improvement. I stopped all
treatments three years ago and have remained the
same health-wise. She’s deteriorated. She now has a
Baclofen-Morphine pump - which doesn’t work to
alleviate any pain. Turns out, her pain doc said,
that the pump doesn’t work on MS patients. Go
figure!

I look forward to your thoughts, comments, and
stories.

All the best to you and yours…

  • Kate

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#3

Welcome, Kate! I’m Kate also (48). My younger sis told me about 2 yrs ago
that she was dx’d with RRMS; she was vague when she was dx’d–I think in
2000.
My sis won’t really discuss MS or her symptoms with me. She is very closed
mouthed about it, which kind of depresses me. But that’s the way she wants
it. I talk to her alot about my symptoms, then I wind up feeling foolish…I
don’t know why, but I do. The support comes in our just trying to get
together and doing stuff. For instance, I’m training for the 20 mile MS Bike
Tour, Sept.30.,so we went out about 6am biking on the trail.
Her symptoms from what I can tell, are fatigue, heat sensitivity,
cognitive stuff…but to look at her…it is not obvious.
She is on Avonex.

I have had Trigeminal Neuralgia since 1997–but no one could figure out
what it was; so I had terrible pain for YEARS> my sister, without telling me
about her MS, hooked me up with her neurologist (who I didn’t know was her
neuro), he dx’d me with TN. He wanted to do all these tests, but I wondered
why–he thought my sis had told me she had MS, which she didn’t.To make a
long story short, I was dx’d with TN in May 2005, then with MS in 12/05. I
was on Copaxone from Jan. 06 til Feb.07. June 4, 2007 I began Tysabri. I had
3 major flares while on Copaxone, so my neuro and I decided it would be
better to make a change. Since I’m quite prone to depression, and depression
can arise with some of the other CRAB’s, we decided to go with Tysabri–so
far so good. My symptoms: left leg and foot weakness, with a tendency
towards foot drop., TN pain of course, cognitive junk, depression, fatigue,
bladder stuff, sexual issues. I’d think, Kate, your sister might want to at
least try the Tysabri. If you have further questions, please write me
privately, or post here .katelloydkidz@optonline.net
blessings, kate
----- Original Message -----
From: “kjohnson2227” ms-cpt5560@lists.careplace.com
To: katelloydkidz@optonline.net
Sent: Friday, August 10, 2007 10:40 PM
Subject: [ms] Siblings with MS

#4

For Kate Johnson2227
Hi Kate, from Australia via Internet.
I generally decline to respond to general questions like your own - but something about it registered this time. I’ve seen and talked to many PwMS (People with…) over the years, and can honestly say that I’ve never seen two exactly the same. I even met identical twins - who have both been Dx, but in different parts of the body ! So drawing any general rules, or classic cases, seems impossible - no wonder it drives the doctors to distraction. Seems specially unfair for the docs to be Dx - but they can at least translate the tech stuff.
When actimg as an MS Ambassador (explaining us to schools, nurses, funders etc) I usually represent myself as the luckiest guy on the block - because I was able to continue with a growing job for 10.5 years after Dx, my partner stuck around, we now have two houses to live in with our 15 year old son, and we have continued to travel worldwide (Rio, Africa, Macchu Picchu, last year Vienna/Budapest/ Prague). I’m usually able to work around any serious symptoms - though my limited vision makes driving impossible (I kicked off with Optical Neuritis) and I regularly make mistakes/misjudgments. I was Dx in 1982 at age 32 - meaning there was no MRI for diagnosis, leading to spinal tap etc: so my first 25 years is over: but I choose to see this as a preparation for the next 25.
Right now, I’m President of PwMS in Victoria (a state) - but only because my predecessor had a full-on heart attack in the job, and I only took it 2 years ago on my terms. Before that I had been the Editor of our Newsletter, ‘Short Circuit’, and a Volunteer in other ways. We think the priority issue is what happens after Dx - and we provide an Online network, a Peer Support Programme, a SelfHelp Group system and assorted other functions at that critical time -mostly at no charge. So I’m the lucky one - although I like to manage things a little to get better ‘luck’. Like you I’ve never taken any of the ABCR drugs, which used to be a fierce price here but are now subsidised, and seem to suit some people if they start early enough. I’m in touch with assorted international PwMS - from Buenos Aires to London.
I’m an only child - so must disappoint you on the sibling issue. Aside from the first week of Dx - I feel lucky never to have spent time in a hospital bed. I don’t seem to get much fatigue or regular pain, and I’ve just started a regular exercise routine. My memory can be erratic - but my sense of humour has grown in strength, if amything - and seems to me a vital requirement for all PwMS. In this country, the incidence is about 0.1% - or 1 in a thousand - with numbers stretching from 2F:1M to 4F:1M - who knows why?
Depression is a factor that, not surprisingly, affects PwMS - but so far has left me alone. The only medication I take in small amounts is called a mild anti-depressant - a tri-cyclic called ENDEP, made in New Zealand. The last substantial ‘incident’ I had was in Santa Fe, NM as I was on a solo Round-the World trip taking in Japan and England. Because I was employed in a substantial firm (who paid more than once for me to fly the world Business Class) I was treated well by the Superannuation system - and therefore can Volunteer left right and centre.
One thing we do for anyone Dx in Victoria is offer a book - the best we’ve found so far - called ‘Taking Control of my MS’ by a Doctor also Dx - George Jelinek. With this we certainly aren’t recommending one perticular treatment - but it does seem to explain sensibly what we know so far about the origins and progress of MS. So we equip new Dx better to make up their own minds, and become their own specialist resource.
Probably I’ve written too much - but if you want to ask/say more, please feel free…stay well…David Sullivan
ps Best Wishes to you and your sister.
----- Original Message -----
From: “kjohnson2227” ms-cpt5560@lists.careplace.com
To: sullivs@iprimus.com.au
Sent: Saturday, August 11, 2007 12:40 PM
Subject: [ms] Siblings with MS

#5

I just ran across your post although it’s old I wanted to express my idea to you for your sister. Since her pain is uncontrollable she might try going to a pain center where they specialize in pain managment.

#6

Hi, I’m sure late responding to your question, but here goes…

My sister is four years younger than I am, and was diagnosed with RRMS in Sept '99. Her chief complaint was drop-foot. She has no insurance, received Avonex for six months at no cost, then stopped taking it. Hers has become secondary-progressive, and she walks with a walker.

I was diagnosed with RRMS in June '00 at the age of 51. My complaint was double vision, which developed literally overnight. I had insurance, got a good agressive neurologist, got onto Copaxone immediately.

I’ve stayed relatively stable, my vision blurs when I’m overheated [I live in Texas], and I suffer from vasovagal syncope when tired.

I of course have no idea if our differing courses of the disease are the result of luck, or the difference in our treatments, or a combination of both.

Best of luck to both of you.