MS with trigeminal neuralgia


#1

Hi, I just joined, and would like to introduce myself. I’m Kate, almost 48. I have 5 kids: 7, 10, 13, 15, 18. I have MS and Trigeminal neuralgia. I’m looking to reach out and meet others with like condition and get to network and share info about what works. blessings, kate Anyone else have TN and MS?


#2

No, I’m new here. I had rec’d a message today from sidedawn1 from careplace that she wanted to be buddies. I’m Kate, just turned 48, have trigeminal neuralgia, and MS. Am married with 5 kids: 19, 15, 13,10 ,7. 3 girls, 2 boys. I’m new to this Careplace, so could use some assistance. blessings to you, kate
----- Original Message -----
From: “maddmom” ms-cpt4515@lists.careplace.com
To: katelloydkidz@optonline.net
Sent: Thursday, July 19, 2007 6:08 PM
Subject: Re: [ms] MS with trigeminal neuralgia


#3

Hi Sidedawn1…Gee, I had just written ‘my story’…and man, was it L O N G…and…it disappeared! For some bizarre reason…oh well… TN= Trigeminal Neuralgia. It was actually the very first symptom I had, evident of MS. It began in 1997, but no doctor knew what it was. I saw ENT’s, dentists, and a neurologist. I had teeth removed, root canals, lots of antibiotics–as they said it was chronic sinusitis…Finally, my doll of a neurologist here in NY–Dr. Andrew Decker “got it” in May 2005. The trigeminal nerve is the 5th cranial nerve. If you have symptoms of TN well before age 50, they are to suspect MS. So, after dx of TN, I had the MRI’s the spinal tap, the evoked potentials. 12/8/05 I was dx’d. I began copaxone Jan 06. Had 3 exacerbations from July 06 til 11/06. Began Tysabri June 4 of this year. I am 48, am married, have 5 kids: 3 girls: 10,15, 19 and 2 boys: 7 and 13. Life is hectic. Kicking myself that I didn’t sign kids up for summer camp, but didn’t have the $ at the time! lol! Looking forward to getting to know you. blessings, kate
----- Original Message -----
From: “sidedawn1” ms-cpt4515@lists.careplace.com
To: katelloydkidz@optonline.net
Sent: Thursday, July 19, 2007 2:55 PM
Subject: Re: [ms] MS with trigeminal neuralgia


#4

Hi Kate.

I don’t know what TN is, but I have asthma and thyroid issues as well as MS.


#5

IM SORRY DO I KNOW YOU?

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#6

DO I KNOW YOU?

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#7

I AM ALSO NEW HERE I EVEN FORGOT I SINGED UP,
MY NAME IS WENDY IM A MOTHER OF 3 GIRLS 20,13,10
I HAVE HAD MS SCINCE 1998 ,I AM 37
JUST OUT SIDE OF BUFFALO NY IN A SMALL TOWN CALLED SARDINA
SORRY GOTTA RUN TIME FOR WORK ILL FINISH LATER
TTYS WENDY

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#8

I AM ALSO NEW HERE I EVEN FORGOT I SINGED UP,
MY NAME IS WENDY IM A MOTHER OF 3 GIRLS 20,13,10
I HAVE HAD MS SCINCE 1998 ,I AM 37
JUST OUT SIDE OF BUFFALO NY IN A SMALL TOWN CALLED SARDINA
SORRY GOTTA RUN TIME FOR WORK ILL FINISH LATER
TTYS WENDY

************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour


#9

Hi Wendy~Nice to meet you. I actually think I’ve heard of Sardina. I’m in the lower Hudson Valley --in Ossining. I have the 3 girls part, + 2 boys. 3 of mine are very close ,or exact in age–I have one that just turned 19–she is going into her 2nd yr. at Arcadia U. in Philly, and my 10 yr old is also a girl, she will start 5th grade in the fall, and I have a 13 yr old also, but he’s a boy, and will begin 8th grade in Sept.
I too have lots to run to. Today, is PT/cranial sacral therapy, as well as at noontime, my 2nd Tysabri infusion. Hope your day is well… take care, blessings, kate
----- Original Message -----
From: “maddmom” ms-cpt4515@lists.careplace.com
To: katelloydkidz@optonline.net
Sent: Friday, July 20, 2007 6:46 AM
Subject: Re: [ms] MS with trigeminal neuralgia


#10

HELLO,I JUST DONE WITH ALL MY RUNNING FOR THE DAY, IF YOU DONT MIND WHAT IS
TRIGEMINAL NEURALGIA? NEVER HEARD OF IT,
I HAVE SOME FAMILY OUT YOUR WAY,AND I WORKED WITH A GIRL WHO ATTENDS SOME
CULANARY ARTS SCHOOL IN THE HUDSON VALLEY, MY SISTER IN LAW LIVES IN THE
BRONXS AND MY SISTER LIVES IN GOSHEN NY,AND ANOTHER IN LAW LIVES IN MAHATTEN,EW,I
GUESS THAT COVERS THAT,
BACK TO MS I JUST HAD A RELASPE EASTER MORNING AND WAS PUT ON STERIODS THE
MONDAY AFTER,NEVER HAD ONE LIKE THIS ONE MAN IT WAS BAD ,THE FIRST TIME EVER I
FELT LIKE 1000LBS ON MY ANKELS,I ENDED UP QUITTING MY JOB ONE OF THEM ANY
WAY,I STILL DO HOME HEALTH CARE,FOR 3 LADIES,
WELL THE KIDS WANT ON SO IM OFF FOR THE NIGHT
IN HIS LOVE
WENDY

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#11

HELLO,I JUST DONE WITH ALL MY RUNNING FOR THE DAY, IF YOU DONT MIND WHAT IS
TRIGEMINAL NEURALGIA? NEVER HEARD OF IT,
I HAVE SOME FAMILY OUT YOUR WAY,AND I WORKED WITH A GIRL WHO ATTENDS SOME
CULANARY ARTS SCHOOL IN THE HUDSON VALLEY, MY SISTER IN LAW LIVES IN THE
BRONXS AND MY SISTER LIVES IN GOSHEN NY,AND ANOTHER IN LAW LIVES IN
MAHATTEN,EW,I
GUESS THAT COVERS THAT,
BACK TO MS I JUST HAD A RELASPE EASTER MORNING AND WAS PUT ON STERIODS THE
MONDAY AFTER,NEVER HAD ONE LIKE THIS ONE MAN IT WAS BAD ,THE FIRST TIME EVER
I
FELT LIKE 1000LBS ON MY ANKELS,I ENDED UP QUITTING MY JOB ONE OF THEM ANY
WAY,I STILL DO HOME HEALTH CARE,FOR 3 LADIES,
WELL THE KIDS WANT ON SO IM OFF FOR THE NIGHT
IN HIS LOVE
WENDY

************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour


#12

My MS was diagnosed in 2004 and has taken a
chronic relapsing and progressive course. In
retrospect, my doctors say I had symptoms as early
as the mid 80s.

Interestingly, I had my first bout with trigeminal
neuralgia in 2002. To this day, the trigeminal
area is one of the first effected in many of my
more severe relapses. I also developed shingles in
my eye and face on the same (left) side of my face
and have since had post herpetic neuralgia (PHN)
repeatedly.

I am 3 weeks post severe relapse which included 16
days in the hospital and IVIG for 5 days and my
first Novantrone treatment. I am doing well now
and walking better than I have in 2 years (but
the pain along my face and cheek and eye will not
quit and they have me on heavy doses of Oxycontin
since release from the hospital.


#13

Hi there…ok, here’s the thing: Trigeminal Neuralgia…Your trigeminal nerve is the fifth cranial nerve. There is a pair of them–one for the right side of your face, one for your left. Sometimes a vein or an artery, presses against this nerve, and causes extreme pain, in the form of lightning strike sensations, or banging, like a hammer, or a nail being driven. It is awful. Pure, sheer pain. Nothing like it. Sometimes folks have MS related TN. That’s what I have. Most of the time stuff like surgeries and procedures only give temporary solutions. That is my case so far. I had brain surgery 8/05–microvascular decompression. They found a vein pressing on the nerve. The cauterized it. The surgery went well. I was pain free . Unfortunately pain free for only 2 months. Back on medication. Then remission. Then pain again, and a Gamma Knife, or stereotactic radiation in Oct.06. That helped for awhile. But, again, not for long. Pain again. Now I’m on 4 different meds for it. I feel like a zombie. Prior to these meds the pain was 10. Now I’m at about a 7 or 8. Very drowsy. The only thing that makes the pain go away is sleep. But with 5 kids, that is often impossible to do, during the day , at least. Right now I’m so zonked I’ve got to get a nap in…Yes, your family is quite close to me. Goshen is only about 45 min. The girl you worked with must go to the very well-known CIA–Culinary Institute America, in Hyde Park, I think that’s where it is located, about an hour from here.
If you google trigeminal neuralgia, you can find out a lot about it–it has been called --the suicide disease–that’s how bad the pain is…take care. blessings, kate
----- Original Message -----
From: “maddmom” ms-cpt4515@lists.careplace.com
To: katelloydkidz@optonline.net
Sent: Friday, July 20, 2007 10:30 PM
Subject: Re: [ms] MS with trigeminal neuralgia


#14

Wow that sounds aweful!!! I read your profile does your husband help with
the kids ect???
I get headaches but nothing like yours,one time i had to be put on some
steriod to get rid of it i had it for days,but the steriod worked
So do you work? I wish I didn’t have to,sometimes its tuff on me and I slow
down,my oldest girl who is 20 understands my disease but my 2 little ones dont
get it yet,probably because i tend to do it all and that’s what they know. i
wish they had a class or something for them to go too,to understand more,lol
who am i kidding i dont even understand the disease,and i have had it scince
1998,maybe someday
what theropy do you take? im on betaseron,ever other day injection,but i
kinda do it when i remember after 10 years i cant stand taking it anymore i wish
it was a pill,instead forgive me for jumpimg from one thing to another and
my spelling,well hope you have a nice day
god bless & stay well
do you have a email address cuz i never go on this web site like i said
before i forgot about but i do enjoy talking with you

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#15

Wow that sounds aweful!!! I read your profile does your husband help with
the kids ect???
I get headaches but nothing like yours,one time i had to be put on some
steriod to get rid of it i had it for days,but the steriod worked
So do you work? I wish I didn’t have to,sometimes its tuff on me and I slow
down,my oldest girl who is 20 understands my disease but my 2 little ones
dont
get it yet,probably because i tend to do it all and that’s what they know. i
wish they had a class or something for them to go too,to understand more,lol
who am i kidding i dont even understand the disease,and i have had it
scince
1998,maybe someday
what theropy do you take? im on betaseron,ever other day injection,but i
kinda do it when i remember after 10 years i cant stand taking it anymore i
wish
it was a pill,instead forgive me for jumpimg from one thing to another and
my spelling,well hope you have a nice day
god bless & stay well
do you have a email address cuz i never go on this web site like i said
before i forgot about but i do enjoy talking with you

************************************** Get a sneak peek of the all-new AOL at
http://discover.aol.com/memed/aolcom30tour


#16

Wow that sounds aweful!!! I read your profile does your husband help with
the kids ect???
I get headaches but nothing like yours,one time i had to be put on some
steriod to get rid of it i had it for days,but the steriod worked
So do you work? I wish I didn’t have to,sometimes its tuff on me and I slow

down,my oldest girl who is 20 understands my disease but my 2 little ones
dont
get it yet,probably because i tend to do it all and that’s what they know.
i
wish they had a class or something for them to go too,to understand
more,lol
who am i kidding i dont even understand the disease,and i have had it
scince
1998,maybe someday
what theropy do you take? im on betaseron,ever other day injection,but i
kinda do it when i remember after 10 years i cant stand taking it anymore i
wish
it was a pill,instead forgive me for jumpimg from one thing to another and

my spelling,well hope you have a nice day
god bless & stay well
do you have a email address cuz i never go on this web site like i said
before i forgot about but i do enjoy talking with you

************************************** Get a sneak peek of the all-new AOL
at
http://discover.aol.com/memed/aolcom30tour

__

************************************** Get a sneak peek of the all-new AOL at
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#17

Hi there
Yes, you can email me at: katelloydkidz@optonline.net
or I’m numbskullkate at yahoo IM
I’m on Tysabri. I began it June 4. of this year. Before then I was on copaxone from Jan. 06 til Feb. 07.
I work p/t during the school year. I do music at a nursery school It is only 5 hours a week. I do 1/2 hour for 2 2 yr old classes, I do 3 and 4 yr old classes as well. It pays well. I get like $27 per 1/2 hour. However, I looked into disability, and I don’t have enough work credits. I had stayed at home full time to raise my 5 kids. So I worked full-time in personnel at a home health agency, placing nurses in homes, hospitals and nursing homes. So that was from like 1979 til 1988–then I had my first child. I had kids in: 1988, 1991, 1994, 1997 and 2000. In 2002, I went back p/t working in another nursery school. I’ve been working only p/t since 2002. I was dx’d with MS 2005. I’ve had this stinking trigeminal neuralgia since 1997.
The NMSS might have, yes, they have a publication for kids called ‘Smyelin for kids–or something like that–if you go to the NMSS web site, they have all sorts of good info, and if you have a local chapter, you can sometimes hook up with their social worker–through the MS society, we are eligible for services–like counseling services for you and your kids–for free–something like 5 sessions.
I’m in such horrible pain, i’m not doing much of anything. on our way home from vacation, my 10 yr old breaks the silence in the car by saying…and you had to go and get MS—its’ ruined everything! yeah, well, that’s my Kelly girl for ya…
talk to you soon. feel free to write me private or im me anytime.
blessings–kate
----- Original Message -----
From: “maddmom” ms-cpt4515@lists.careplace.com
To: katelloydkidz@optonline.net
Sent: Tuesday, July 24, 2007 6:19 PM
Subject: Re: [ms] MS with trigeminal neuralgia


#18

Hello, I am new here and also new to careplace, glad to have found it. I am currently not diagnosed with MS although we are suspecting it, however, I do have TN very bad, I also have other Autoimmune Disease (s): Autoimmune Hepatitis, I have Migranes, I have High Blood Pressure, Heart Valve Disease, Heart Murmur, in addition to the very painful, Trigeminal Neuralgia. It affects all three brances of my TN and can switch sides as well. I was wondering if there are others here who were diagnosed with other Autoimmune Diseases or Trigeminal Neuralgia before coming to the diagnosis of MS? What tests should I be asking for? I have a second and a first cousin with MS. Our mothers are sisters which means we have the same grandfather and I think this is where our MS comes in from.


#19

You must be a very busy person. Have you had any treatment for your ms yet. Is your family understanding as too your illness. I know Ice Packs help a little and Neurontin helps a little but I have to drink beer to boost the neurontin. For some reason alcohol works good on nerve pain (unfortunantly.) I take it at bedtime only.