Re: We have a NEW MEMBER! pilot_989- answers to sharons questions

Posted November 25, 2007 · November 25, 2007

I don't know if I am repeating myself or not ( I think my reply got

lost in space) so please forgive me if this is repeat info!

I have been on temporary state disability since June which is about 4

mos. after the worst pain and fatige started. I am due to return to

work on Dec. 3 on a part time basis (12 hours a week, my job

assignment is for 40 hrs a week) I am a public health nurse, I do

home visits working with poor and homeless children. I am very

concerned about returning to work. One, becuase I am still in a lot

of pain, horrendous fatigue, have episodes of vertigo which leads to

nausea, I have left sided weakness, which causes further balance

issues at times. I have other physical issues but those are the ones

that bother me the most, and are the most likely to interfere with

work. I am worried about not being able to do my job, and I am also

worried becuase I do not have a diagnosis. I ALSO am concerned about

how my supervisors and coworkers are going to treat me. They are all

very nice, however, There is that sense of " So what is so wrong with

you that you can't work " or " you don't look so sick " and I've already

gotten little bit of attitude for only coming back at half time

duty. So I guess I gotta put my extra tough skin on and remind myself

that only I know what is right for me, that they are not in my body,

etc....

As far as pain goes, I hurt all over, but the worst of my pain tends

to be deep in my thighs - like a burning, cramping pain. And also my

feet burn like heck - I'm constantly trying to stretch my feet or rub

them when I can. Otherwise my hands, shoulders, neck.... I could go

on. I have had episodes of slurred speech, urinary incontinence that

my GYN says is probably neurological not my anatomy.

My next Appt with my neurologist is Mid Dec. I am anxiously awaiting

the LP results (done Thurs. before thanksgiving) Does anyone know

how long the results take? I think I will call her on Monday. If my

CSF is negative for the bands can I still have MS? I'm also still

waiting to get the cervical MRI. My brain MRI showed a 1cm white

matter lession at the gray/white junction in my right temporal lobe.

Thank you all in advance for any comments/suggestions you may have!

Sorry this ended up being so long - I feel like I have been

so " alone " in all of this for so many months it has been very

frustrating and confusing.

Kami

>

> Do you work Kami? If so how have your symptoms impacted you on the

job? I used to work for the State of Arizona but went on disability

in 2000. I was in such bad shape when I went out on short term

disability and for months all I did was sleep.

>

> I am a 56 year old gramma of 8 grandkids ages 4 to 20. I live with

my son and his wonderful, patient wife and their 4 kids ages 5, 10,

11 and 13. I take care of the kids while their parents are working.

We also homeschool and I am the main educator of these grandkids.

>

> Sharon

>

> This email is a natural hand made product. The slight variations in

spelling and grammar enhance its individual character and beauty and

in no way are to be considered flaws or defects.

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> Re: We have a NEW MEMBER! pilot_989

>

> Thank you for the welcome Peggy!

> I wish I would have gotten the neck MRI done with the brain - I

REALLY don't like getting my head stuck in that machine (who does?).

Anyway, the reason my Dr. didn't initially order the neck mri is that

I got the brain mri because I was having a lot of right sided

migraines and not necessarily to look for MS lesions, and that is

when they saw the temporal lobe lesion and started to suspect MS.

>

> I didn't mention earlier I am a single mom of an eleven yearl old

boy, and that keeps me busy too.

>

> Be a better sports nut! Let your teams follow you

> with Yahoo Mobile. Try it now.

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Posted November 26, 2007 · November 26, 2007

Kami,

Yup, even with negative OCB in the CSF you can still have clinically definite MS.

here: http://jnnp.bmj.com/cgi/content/abstract/60/1/27

As you may find out in the days or months to come, MS is sometimes extremely hard to diagnose. This is an extremely good article to read, in fact, the whole website is a fountain of good information as well.

http://www.mult-sclerosis.org/diagnosingms.html

I on the other hand went straight for the jugular in my diagnosis, and passed or failed each of the tests, however you choose to look at the situation. But then my medical history seemed to prove that my body had actually been inhabited by the MonSter for at least 10 years prior to my diagnosis. I'm not sure that I would have gotten such a quick positive during the years preceding my diagnosis. In fact, I was the one to tell my PCP that I was pretty certain that I did have MS... She scoffed... but did a few manual tests in the office, and the sent me for an MRI as well. She wasn't chuckling anymore when the results came back from the MRI.. In fact, she was on the phone making appointments with Neurologists and Opthamologists immediately.

Now, I'm not sure if the neuro can start you on any of the CRAB-T drugs without a positive diagnosis. I don't think that you will be given the choice of Tysabri immediately. My suggestion, and only my suggestion, would be if given a choice pick Copaxone as your first choice. I don't hold stock in Teva... lol.. but I do HOLD stock in Teva.. I have been on Copaxone for 13 months now. I did Avonex for 4 years following diagnosis in 2000. From 2004 until last year, I did nothing.

I wish that I had been given the choice of Copaxone at the beginning, but Avonex showed promise and seemed to be the way to go. Even my MS mentor thought that was the best on the market. I never "felt" the Avonex work, but then you aren't supposed to feel it working. I can be pretty sure that it had a hand in resolving 4 of the 7 lesions that I had at diagnosis, within 4 months. So I won't say that it doesn't work.. It does.. but studies have begun to show that after 2 years of Avonex treatment, the body can begin to build antigens (I think is the word) against Avonex, and that it doesn't work quite so well once that happens.

About a year and half to two years before I stopped taking the Avonex, some European doctors were questioning the feasibility of adding Copaxone to Avonex, because they are two completely different medications, thus covering ALL the bases in treatment... My neuro wouldn't go for it.. and he suggested Novantrone.. with a bit of research, I quickly ruled out Novantrone as an option for me...

But I continued to take the Avonex, until I KNEW that it wasn't working for me any longer, as the MonSter was progressing. Then I read the insert, in the fine print, where some people had developed Congestive Heart Failure with absolutely NO family history of heart problems at all. My paternal grandmother died of CHF, and my father now has CHF (though he'll deny it).. and I'm thinking just WHAT are the odds that I too will develop it way before my 60's or 70's if I continue using Avonex?? .. I decided that a wheelchair was preferable to the alternative.

I wasn't able to get my neuro to prescribe Copaxone until last year.. and then I hadn't been to see him since I went off the Avonex. When my son died in an auto accident, my neuro did prescribe Xanax (15 whole pills.. lol.. but that's okay, I only wanted them "just in case" and then I always broke the quarter milligram tablets in half, because I didn't want to "space out".. just wanted to smooth out the rockey spots.. I just recently finished that 15 pill prescription.. and he died in May of 2006)... BUT he refused to fill any other of my prescriptions.. baclofen, anti-depressant etc... until I came to the office for a visit...

Of course, the first thing he did was send me for a new MRI.. and when I came back for the next visit, he told me there were NEW lesions and some enhancing old ones (could have told him that because of the major mood swings).. and that it was imperative that I go on SOMETHING immediately.. lol.. I asked him what he suggested...

He looked through my charts and said.. well Avonex is out..I nodded.. and Novantrone you refuse.. I nodded... Tysabri hadn't been re-released again as of yet.. so that was out... He said "Well, Copaxone is the only thing left".. I said BINGO.. that's what I asked for TWO years ago!!!...

Yes, it's a daily injection, and yes the one "serious" side effect is the shortness of breath, (it's a pseudo-anaphylactic shock type deal).. but that side effect occurs RARELY.. (yes, rarely.. the only time it happens, though not a proven by scientific study, is when you nick a vein, or in my case put the whole dose into a vein).. the other side effects... redness, warmth, itching, bruising, a welt, and some other minor (or at least I feel they are minor) side effects..

Now, if I haven't completely killed your interest on the pseudo anaphylactic shock thing.. I will relay my experience with Copaxone.. Though, again this isn't typical, in fact the Shared Solutions nurse told me that though she'd heard similar things.. it didn't normally happen that fast....

My first injection was at night, (residule from the Avonex days, when I was going to start to run a fever and start aching and feeling miserable about an hour after injection, so chose to try and sleep through most of it).. and we injected the back of my leg (also residule from the Avonex days, and not a recommended spot for Copaxone anyway).. so it felt like I been stung by a hornet... for a good hour or so.. because I was sitting on the injection site..LOL

But on the first of my many trips to the bathroom in the middle of the night.. I noticed that my legs didn't feel wobbly.. and they always felt wobbly.. I would have to sit up in bed, get my bearings and reach for a nightstand to balance my way to the bathroom.. but NOT that night!!! or any night since then...

It has gotten better and better for me as well.. I don't use my cane anymore, except for maybe really really hot days, when the a/c at work doesn't get turned on until late afternoon (too late for me) and then I had to go out in the heat to a car where the a/c needed to be recharged... and be in the heat again for another 10 or 15 minutes.. Then my balance might be off a bit, and I'd need my cane for balance.. But as soon as I cooled down, the cane wasn't needed anymore... It's taken up residence on the floor of the back seat of the car now.. And up until then, that cane was my constant companion, except in the house, for 4 years or more...

I've gone back to work 3 days a week.. for a total of 20 hours a week.. and the last week of the month, I work all 5 days.. not quite 40 hours, but 34 hours a week.. (I get paid for lunch hour too.. which is nice)... And I'm pretty sure that if I had an employer that understood my limitations (as does my current employer) I could easily work full time once again.. well maybe not easily.. but in time it wouldn't be too overly hard to do.. I'd just spend weekends veggin' out.. lol..

I can now help with the housework again.. which I hadn't been doing much of.. Maybe a load or two of laundry... now I can wash and dry and fold clothes all day.. though I don't.. LOL.. and I can wash more than one sinkful of dishes before having to take a half and hour to forty-five minute break between.. you know just in time for the water to be cold and having to draw new hot water to wash the next load..

They have completed the "official" studies and can now announced proudly and with backing that 92% of people with MS being treated with Copaxone for 10 years or longer are STILL walking unassisted!! I like those odds.. Now my balance is still off, but I hope that will return as other things have been steadily, though not rapidly.. but I suspect it's going to take some time to regain all that I've lost over the past 7 to 17 years.. preceding and after diagnosis..

Oh.. and I nearly forgot.. Welcome to the group.. I'm glad that you found us.. but I'm extremely sorry that you needed to find us... You won't find a more fantastic group of people, who quickly become extended family, anywhere on the internet.. I can guarantee that ONE thing in a life full on NO guarantees!!!

|}onna

Re: We have a NEW MEMBER! pilot_989>> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> Thank you for the welcome Peggy!>> I wish I would have gotten the neck MRI done with the brain - I > REALLY don't like getting my head stuck in that machine (who does?). > Anyway, the reason my Dr. didn't initially order the neck mri is that > I got the brain mri because I was having a lot of right sided > migraines and not necessarily to look for MS lesions, and that is > when they saw the temporal lobe lesion and started to suspect MS. >> >> I didn't mention earlier I am a single mom of an eleven yearl old > boy, and that keeps me busy too. >> >> >> Be a better sports nut! Let your teams follow you >> with Yahoo Mobile. Try it now.>> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> > ______________________________________________________________________> ______________>> Be a better sports nut! Let your teams follow you >> with Yahoo Mobile. Try it now. > http://mobile.yahoo.com/sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ>>> > > > >

Posted November 26, 2007 · November 26, 2007

My evoked potentials was normal but I had lesions and was positive on one band on LP. It just goes to show there are as many variations in the way we are dxed as the way MS affects each of us. Connie--I hope you don't Igor Walk either. It's fine for Halloween but may be noticed just after Thanksgiving! LOLhugs))Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: We have a NEW MEMBER! pilot_989

>

> Thank you for the welcome Peggy!

> I wish I would have gotten the neck MRI done with the brain - I

REALLY don't like getting my head stuck in that machine (who does?).

Anyway, the reason my Dr. didn't initially order the neck mri is that

I got the brain mri because I was having a lot of right sided

migraines and not necessarily to look for MS lesions, and that is

when they saw the temporal lobe lesion and started to suspect MS.

>

> I didn't mention earlier I am a single mom of an eleven yearl old

boy, and that keeps me busy too.

>

> Be a better sports nut! Let your teams follow you

> with Yahoo Mobile. Try it now.

>

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Posted November 26, 2007 · November 26, 2007

I only had the visual test done and didn't know there was more to it until it was mentioned here on the group. Two lesions are plenty for us. Are they plenty for you? lolloveSharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: Re: We have a NEW MEMBER! pilot_989- answers to sharons questions

Hi Sharon, Connie, Kami and group...

I recall my neuro calling me after I had the evoked potentials and saying, "I'm sorry, but your test came back 'bad'". When I asked for more details he just said the only portion that was 'bad' or 'abnormal' was on my legs. My eyes, ears and arms/hands were fine. When I really tried to get more details, like--well is there 'degrees' of bad--he said no, which I thought was odd.I only have 2 lesions and sometimes I think I shouldn't be here with 'only two'!.

Love ya all, Kate

My evoked potentials was normal but I had lesions and was positive on one band on LP. It just goes to show there are as many variations in the way we are dxed as the way MS affects each of us. Connie--I hope you don't Igor Walk either. It's fine for Halloween but may be noticed just after Thanksgiving! LOLhugs))Sharon

..

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Posted November 26, 2007 · November 26, 2007

Really, Sharon? I had the whole EP test done-eyes,

ears, arms and legs. But the legs was my only abnormal

one. I suppose 2 lesions are enuf fer me! I do wonder if

there are any 'happenin' elsewhere--like C or T spine. I'm

having a devil of a time with my balance, numbness in my

foot and spasms.

love you, Kate

Re: Re: We have a NEW MEMBER! pilot_989- answers to sharons questions

Hi Sharon, Connie, Kami and group...

I recall my neuro calling me after I had the evoked potentials and saying, "I'm sorry, but your test came back 'bad'". When I asked for more details he just said the only portion that was 'bad' or 'abnormal' was on my legs. My eyes, ears and arms/hands were fine. When I really tried to get more details, like--well is there 'degrees' of bad--he said no, which I thought was odd.I only have 2 lesions and sometimes I think I shouldn't be here with 'only two'!.

Love ya all, Kate

My evoked potentials was normal but I had lesions and was positive on one band on LP. It just goes to show there are as many variations in the way we are dxed as the way MS affects each of us. Connie--I hope you don't Igor Walk either. It's fine for Halloween but may be noticed just after Thanksgiving! LOLhugs))Sharon

..

Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

Posted November 26, 2007 · November 26, 2007

Oh my, I think Dr.'s should be taught in medical school that only

under very rare circumstances should they use the word " bad " !

It was pretty much drilled into us in nursing school to stay in the

hospital room when the dr is talking to your patient, and stay in the

room after the Dr. leaves to " interpret " to the patient what the Dr

was trying to say, or NOT say. HEE HEE -- and I found this to be so

true ( Don't get me wrong, I have a very deep respect for most

doctors and really enjoy working with them, and it is stories like

this that get me giggling about some of them I have worked with!)

Kami

>

> Re: Re: We have a NEW MEMBER! pilot_989-

answers to sharons questions

>

> Hi Sharon, Connie, Kami and group...

> I recall my neuro calling me after I had the evoked potentials

and saying, " I'm sorry, but your test came back 'bad' " . When I asked

for more details he just said the only portion that was 'bad'

or 'abnormal' was on my legs. My eyes, ears and arms/hands were fine.

When I really tried to get more details, like--well is

there 'degrees' of bad--he said no, which I thought was odd.I only

have 2 lesions and sometimes I think I shouldn't be here with 'only

two'!.

> Love ya all, Kate

>

> My evoked potentials was normal but I had lesions and was

positive on one band on LP. It just goes to show there are as many

variations in the way we are dxed as the way MS affects each of us.

>

> Connie--I hope you don't Igor Walk either. It's fine for

Halloween but may be noticed just after Thanksgiving! LOL

>

> hugs))

>

> Sharon

>

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Posted November 26, 2007 · November 26, 2007

Kate,

I had all the EP tests done also. Hated

the electric shocks !! My legs and arms had “abnormal” reactions

according to my neuro.

I don’t know if the amount of

lesions has anything to do with the amount of symptoms. I know there are many

people who have numerous problems and no lesions yet. Or maybe no visual

lesions?

I have seven lesions but my symptoms aren’t

as severe as others on the group.

This sure is an interesting disease….

Connie

From: MSersLife [mailto:MSersLife ] On Behalf Of Kate Rothschild

Sent: Monday, November 26, 2007

6:19 PM

To: MSersLife

Subject: Re: Re: We have a

NEW MEMBER! pilot_989- answers to sharons

questions

Really, Sharon?

I had the whole EP test done-eyes,

ears, arms and legs. But the legs was my only abnormal

one. I suppose 2 lesions are enuf fer me! I do wonder if

there are any 'happenin' elsewhere--like C or T spine. I'm

having a devil of a time with my balance, numbness in my

foot and spasms.

love you, Kate

Re: Re: We

have a NEW MEMBER! pilot_989- answers to sharons

questions

Hi Sharon, Connie,

Kami and group...

I recall my neuro

calling me after I had the evoked potentials and saying, " I'm sorry, but

your test came back 'bad' " . When I asked for more details he just said the

only portion that was 'bad' or 'abnormal' was on my legs. My eyes, ears and

arms/hands were fine. When I really tried to get more details, like--well is

there 'degrees' of bad--he said no, which I thought was odd.I only have 2

lesions and sometimes I think I shouldn't be here with 'only two'!.

Love ya all, Kate

My evoked potentials was normal but I had lesions and was

positive on one band on LP. It just goes to show there are as many

variations in the way we are dxed as the way MS affects each of us.

Connie--I hope you don't Igor Walk either. It's fine for Halloween but

may be noticed just after Thanksgiving! LOL

hugs))

Sharon

..

Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See

how.

Posted November 27, 2007 · November 27, 2007

Kami,

On this you are sooooooo right... One pediatrician, in particular, lost my children and anybody else's children that I could convince to leave his practice.. Why? Wasn't that he was a bad pediatrician, he was very good at what he did.. but he was also a Moron...

Earl, was six weeks old, in the hospital for bronchiolitis and of course they were giving him Ampicillin.... Well, when I'd change his wet diaper, there was an odor to his urine, that I KNEW that I recognized, I just couldn't place it.. So I asked the doctor what was causing that... the Moron COMPLETELY ignored me, and only talked to the nurse... MISTAKE... when Earl was discharged from the hospital, I promptly called the old family physician and asked her to take him on as a patient.. I don't think she subscribed to any insurance plans, so I had to pay the whole whopping $15.00 a visit.. that's what she charged.... $15.00 (and she still made housecalls for the very ill or very elderly.. and she'd do it in the middle of the night!!).. It cost me the same $15.00 the day we spent more than 45 minutes in the exam room going over every single thing that might have caused the German Measles looking rash all over Earl's body... Yeah... he had them.. cause nothing had changed..

Anyway.. the nurse that was with the pediatrician stayed after he left the room.. I'm pretty sure that she knew that I was fuming at that point.. She apologized for him (she should not done so).. and she explained it was overspill of the ampicillin in the urine that I could smell.. Then it dawned on me, and I chuckled a bit.. I knew that I knew that odor... because it smelled soooo much like that penicillin bottle I lived with for so many years after having Rheumatic Fever...

I don't deal well with doctors who will not take the time to "talk" to me.. and they don't even have to explain everything in layman's terms.. I understand and awful lot of their medical jargon, and if I don't.. I have my trusty computer to look it all up on when I get home... I'm sorry.. but ya know.. had I not had a child to raise.. and had circumstances been different.. I might could have been a doctor too.. and I'd probably be laughed out of the medical association.. cause I'd be one of the "OLD" time docs.. visits in the middle of the night.. and pay me with a chicken or two here and there.. LOL...

|}onna

Re: Re: We have a NEW MEMBER! pilot_989- answers to sharons questions> > > > Hi Sharon, Connie, Kami and group...> I recall my neuro calling me after I had the evoked potentials and saying, "I'm sorry, but your test came back 'bad'". When I asked for more details he just said the only portion that was 'bad' or 'abnormal' was on my legs. My eyes, ears and arms/hands were fine. When I really tried to get more details, like--well is there 'degrees' of bad--he said no, which I thought was odd.I only have 2 lesions and sometimes I think I shouldn't be here with 'only two'!.> Love ya all, Kate> > My evoked potentials was normal but I had lesions and was positive on one band on LP. It just goes to show there are as many variations in the way we are dxed as the way MS affects each of us. > > Connie--I hope you don't Igor Walk either. It's fine for Halloween but may be noticed just after Thanksgiving! LOL> > hugs))> > Sharon> > > Recent Activity> a.. 3New Members> Visit Your Group > Cancer Support> on Yahoo! Groups> > Connect w/ others> > find help & share> > Yahoo! Health> Fit for Life> > Getting fit is now> > easier than ever.> > FruitaBü Parents> Healthy Eating Zone> > A parenting resource> > on Yahoo! Groups.> .>

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