Re: I hate neuros!

[Guest guest]

Hi ,

I would just assume I have MS and then go ahead with the BBD, LDN, and other

advice given here:

http://tinyurl.com/advice-to-msers

You have nothing to lose and your health to gain!

With best wishes,

Dudley Delany

http://profiles.yahoo.com/dudley_delany

[Guest guest]

Hi ,

I know I don't like going near nuero's either. The last nuero that

saw me said the same thing after looking at my MRI films-- that he

did not think it was MS because the lesions were not indicative of MS

and also because my spinal tap was negative. In one respect, it might

not be so bad that he is not quick to label you with the diagnosis of

MS. Have you looked at Lyme disease? Lyme tests through standard labs

in many cases will not show the disease. My understanding ( and the

nuerologist that saw me admitted this) is that they cannot tell the

difference on the MRI films between many, many different diseases. We

have talked about this recently on the group. I just read an article

about a woman whom they thought had a brain tumor after looking at an

MRI of the brain-- these were MS specialists at a top ranked

hospital. They went in to remove the tumor and much to their surprise-

- there was no tumor. She was sent to a Infectious Disease Specialist

who proceeded to diagnose Lyme and she was treated and is well today.

White spots or lesions on the brain can also look like small vessel

disease and the specialists in the hospital I was in even wrote that

with a question mark on my MRI films jacket. I know it is very

frustrating and I am at the point that I am beginning to realize the

best approach is to just attempt in the best way possible a way to

try to heal my body because I may never know what I have so to speak

and neither will the doctors:) I think that we need a disease

label for insurance companies, long term disability companies and

such. My mom talked to a specialist the other day for me that says he

believes that there are a lot of cases of misdiagnosed MS.

>

> I had a consult today with a new neuro and he said he doesn't think

I

> have MS. He says the lesions are in the wrong place and that my

> symptoms aren't consistent with MS. >

[Guest guest]

As you have seen, there are varying opinions in this group, but I

have found this to be the best fit for me of the 2 MS groups that I

joined. I dropped the other one and stayed here.

I have PPMS, the specialist thinks I've had it for decades. The first

neuro that I saw did lots of testing and I'd see him for results

about every 3 weeks (his schedule, not my idea). He kept saying to

me " you are a puzzle " or " if you were younger, I'd say you have MS " .

(I am betting he had never seen Primary Progressive). He ended up

sending me to an MS Center where I saw a specialist that diagnosed me

from all of the test results and some of his own exam.

The thing I've found, I don't have relapses. My symptoms do come and

go. More from day to day than from hour to hour. I think some of it

is my attitude and some of it is what I've eatten (but the burning I

felt in my left arm has been absent for a month or more).

I look back now and see the slow and steady decline. At one point

(the beginning of this year) I thought I'd had a stroke as my left

leg and arm didn't work well. I had pain in my left arm that felt

like I had hot water in my veins. Now I know, the surgery for a torn

miniscus 4 years ago and the broken left tibula last year were a

result. The decline in my cognitive thinking, the double vision when

I look left, much more.

Often I will tell a friend that I was diagnosed with MS and they will

tell me they have a relative, friend, person at work, (whatever) with

MS and they will expect my symptoms or lack of them will be the same

thing as their " person " has. They also think I 'should' do the same

treatment. Only about 10% of MS is PPMS:

http://www.nationalmssociety.org/living-with-multiple-

sclerosis/living-with-advanced-ms/prognosis/index.aspx

I suggest you educate yourself as best you can. I went to the library

(while waiting for the date to come to see that specialist the first

time). I got a book by C. Bowling, called 'Complementary and

alternative medicine and multiple sclerosis'.

It not only gave me hope of not using heavy drugs, but also an idea

of what this mysterious MS was all about.

Another book that helped me: 'Meeting The Challenge of Progressive

Multiple Sclerosis' by K. Coyle. I got it used on Amazon.com.

I know a few people that have taken an 'interferon' treatment for

Hepititis C and it destroyed their immune system. That was my main

reason for turning down the treatments offered to me by the

specialst. Turns out those were the CRAB mentioned earlier. (I didn't

know what CRAB meant when I started reading in this group).

Turns out MS is an overactive immune system, (so that made sense to

me). However the premise of this group is using a more natural way of

doing things. Personally, I don't like prescription drugs of any

kind, so the idea of vitamins and minerals is a good thing.

Sorry to go on for so long,

[Guest guest]

I've had MS for about 35 years. My whole family has it. Symptoms come

and go for my entire family. I can walk holding on to furniture n the

morning. Can't in the afternoon. Can in the evening. I have a whole

theoory about this and will post t later. It ties in with Dr.

Walsh....Lydia

[Guest guest]

> I can walk holding on to furniture n the

> morning. Can't in the afternoon. Can in the evening. I have a

whole

> theoory about this and will post t later.

Hi Lydia,

I have the same issue with regard to my vision. (Optic neuritis in

left eye 10/07, problems with right eye began earlier this year after

the Soy Cheese Incident - glare, bright light, etc). It's better upon

rising, worse during the afternoon, better before I go to bed.

Interested to hear your theory.

Crystal

[Guest guest]

Likewise, my symptoms vary quite a lot-- good hours, bad hours, good

days, bad days, good weeks, bad weeks. It makes it hard to evaluatie if

I am getting better or worse overall with time. The last few days have

been really bad--especially brain fog and vision. I have been doing BBD

100% and will continue to do so, but am a little disappointed by the

last few days being so bad while I've been so faithful to the diet for

a couple months now. For a while it seemed BBD was really helping brain

fog, but now I'm not sure why it came back.

>

> 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.

>

>

>