Re: Re: I hate neuros!

[Guest guest]

Unfortunately, this is a problem with many other illnesses, like neuro Lyme's

disease, neuro Syphillis, even after traumatic Brain Insuries...Just throwing

this out to consider all the possibilities. After all lesions can also be caused

by Herpes 1 and 2 (which would be terrible once it is in the brain!).

To all keep up the fight for yourselves! Bianca

 

[Guest guest]

Thanks to everyone who responded to my original post about my neuro appointment.

I should know better than to have any expectations from docs. I will continue

with the BBD. I am contemplating LDN. I am still considering that I have MS

and will proceed in that way.

I have a question regarding RRMS and PPMS. The neuro said I couldn't possibly

have MS because my symptoms come and go throughout the day. I can't really

remember a time in recent memory when I haven't had at least some mild symptoms.

I have had what felt like exacerbations, where the symptoms got worse,

especially vertigo, tingling, nausea, diarreah. But the I have some symptoms

daily, especially burning on the bottom of my feet, tingling in legs and arms,

weakness in muscles, brain fog. I am often cluttzy, frequently bruised from

running in to things and have sleep problems.

So my question is, does the fact that I have some symptoms come and go

throughout the day mean that I don't have MS. Is it possible that is is PPMS?

Any help is so greatly appreciated!

[Guest guest]

, I am certain that opinions will�differ on this one. Personally (and

due to a really great neuro), I do not believe that MS symptoms come and go

throughout the day. My uncle has MS (as well as his mother, sister, and aunt -

so I sort of seen it quite a bit) and when things�started bad in the morning

they�continued�to be, and the other way around. In case things remained bad

for a while he knew he had a flare-up, those were his days of RRMS.

Unfortunately he can not move anything anymore but his left leg at this point.

He�went from RRMS to PPMS, just going down hill, ever so slightly, but

noticeable,� " good " days had a new meaning to him...I am sorry to be so

graphic, I am just trying to explain why come and go is not typical for MS, not

throughout the day. Knowing about my uncle, my husband was told�in Dec

2007�that he has MS.�It didn't make sense to me whatsoever. He too had this

come and go throughout the day. We went to a different

neuro, we wanted an unbiased opinion and didn't tell him anything about the

prior dx. He didn't even suggest MS (though he viewed my husband's MRIs and he

has 52 MS patients in his care), when he was done we told him all about the

former neuro's dx etc. His first thing was, MS symptoms do not come and go

throughout the day, also the csf and blood were negative for MS, 4 times! This

neuro does not believe in the " new " way (Mc's) to make a dx, where a

person has�a lesion/lesions and symptoms - but no evidence in body

specimen....�

Consider this too, many things cause lesions in the� brain or elsewhere in the

body. Herpes, varicella-zoster, epstein-barr, lyme's disease, neuro syphillis,

etc. - Anyway, with the our neuro, my husband found out in September 08, he has

neuro Lyme's disease. He has the titers in his blood and his csf. Just keep your

mind open to things, in the end MS is a name for something a doctor sees on an

image. It is a description but not saying anything about why lesions are there.

I guess the bottom line is, it doesn't really matter what the name, it matters

what is one doing for oneself - become your best advocate, change diet, fight

for yourself! One thing I do advise on, stay away from the big pharma stuff, my

man took it once in January (when he thought it just might be MS), he ended up

having seizures, as for my uncle, part of his getting worse is due

to�more�brain damage from interferon " treatment " .

Wishing you all the best, don't give up your fight, and�don't forget�doctors

are doctors�not Half-Gods�in white (I like to call them that...)�

Have a good day, Bianca

[Guest guest]

That is exactly what my symptoms do. They come and go throughout the day. I

was diagnosed in 04 w/ RRMS and haven't been back to see if anything has

changed.

[Guest guest]

I have PPMS and all the symptoms you mention apart from the nausea and diarrhea.

I've never had a relapse, just a gradual worsening over the 13 years. MS has

been with me constantly for the whole time but my symptoms have varied on a 5

minute time-frame. Before I was in a wheelchair, if I sat down, I'd never know

if I'd be able to get up again. No neuro has ever acknowledged this happens and

always look at me weird. They think (well my neuro anyway and all those I've

ever had) that we are always the same throughout the day. When he does his

stupid tests (touching your nose, putting your forefinger and thumb together,

etc.) I always tell him he'd get a different result if he tried it half an hour

earlier or later.

JanetTo: mscured@...: kristinb769@... I am still

considering that I have MS and will proceed in that way.I have a question

regarding RRMS and PPMS. The neuro said I couldn't possibly have MS because my

symptoms come and go throughout the day. I can't really remember a time in

recent memory when I haven't had at least some mild symptoms. I have had what

felt like exacerbations, where the symptoms got worse, especially vertigo,

tingling, nausea, diarreah. But the I have some symptoms daily, especially

burning on the bottom of my feet, tingling in legs and arms, weakness in

muscles, brain fog. I am often cluttzy, frequently bruised from running in to

things and have sleep problems.So my question is, does the fact that I have some

symptoms come and go throughout the day mean that I don't have MS. Is it

possible that is is PPMS?Any help is so greatly appreciated![Non-text

portions of this message have been removed]

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[Guest guest]

Janet,

Thank you for that information. It is very helpful to me. It seems, as is the

case with most disorders, that doctors expect patient's symptoms to fit into a

very narrow definition. Their minds just don't seem to be able to open up to

there being other possibilities.

My plan now is to keep up with the BBD and supplementation. I will add yoga to

the mix. I will keep LDN as a possibility if things seem to escalate. And I

will try do see if I can deal with a possible candida overgrowth. If things

really escalate and I need to see a new neuro, I will go to a major metro area

rather than try to find one near me.

Thanks again for the info!

[Guest guest]

Hi Jan, it sounds like your having allergy reactions. Food, drink, supplements,

surroundings, etc. ...RP� 12/12/08

[Guest guest]

I should add that the food and drink reactions can be delayed reactions. One to

four days. Or even within an hour. ..RP  12/12/08

Subject: RE: Re: I hate neuros!

To: mscured

Date: Friday, December 12, 2008, 10:05 PM

Hi Jan, it sounds like your having allergy reactions. Food, drink, supplements,

surroundings, etc. ...RP� 12/12/08

[Guest guest]

,

Thanks so much for the info. It si interesting how MS cn be so different for so

many people. Glad to see you have found a way that works for you.

[Guest guest]

Thanks Bianca. That is all great information to consider.

k

[Guest guest]

Very interesting. Thank you!

toddsgirl1977@... wrote: That is exactly

what my symptoms do. They come and go throughout the day. I

was diagnosed in 04 w/ RRMS and haven't been back to see if anything has

changed.