With solely natural approach, how do you manage your neuro? (response; long)

[Guest guest]

Thanks all for the wonderful comments on whether one needs to keep going to

a neuro when they are solely negative in demeanor about your prognosis and

of no help. Alison made a point that if it wasn't for the neuro, she

couldn't get the MRIs ordered but my primary care doc has ordered MRIs for

me more than once so I don't agree necessarily with that statement.

I wanted some assurance from this group that it is okay to simply no longer

go to these MS docs unless it is needed or perhaps just check in every 6

months or whatever...but every 30 days to be terrorized after waiting for

him to be 90 min late and more for your appt.

I can understand continuing to go to a neuro for diagnosis of the disease

or for diagnosis of related illness but to see a person every month who

offers nothing...I just don't get it. I already was declared disabled for

SSDI purposes. He told me at the end of the latest appt that I had a very

chronic progressive relapsing form of the disease now (I was just diagnosed

clinically definite with MS in May 2005 but his medical notes state he

believes I had MS symptoms and disease for MANY years) and that I should

make plans for my young son as he felt I would be in a wheelchair for good

in a year or less. I was briefly paralyzed from the neck down in June

timeframe but IVIG and prayer and faith turned that around before they could

transfer me over to the physical rehab where I was supposed to stay for 30

days or more.

Beyond the MS, I have extreme multiple chemical sensitivities (MCS) and was

injured by overuse of pesticides in my home some years ago. After all the

research I have done, I still believe that I have an MCS triggered CNS

disease that breached the blood brain barrier and they can call it MS

because I meet the criteria but it doesn't answer what is really going on or

why.

This is one of those docs who speaks at every MS society presentation you

see advertised and those of the various pharmaceutical companies. He barely

has time for patients who don't tolerate meds. The interferons caused 25 lb

weight loss in 2 months and 45 days later, I am STILL trying to gain back

some of this much needed weight. He loves to offer steroids in their own

huge infusion facility but I get steroid induced psychosis so all of his

little tricks simply don't work. Then we tried IVIG in a series of

hospitalizations and it helped for 5 days or less but that was it.

I tested negative for the lyme (did several different tests for that since

it was believed I had CNS Lyme involvement initially) About a year ago, I

began seeing a holistic doc and homeopath team. I tested negative for

Candida and negative or very very low values for heavy metals so these were

deemed non-issues. I have never had a cavity or filling in my life either. I

had extensive allergy testing and was found to be allergic to some 26 foods;

some of which I already knew I was allergic through skin testing and IgE and

then IgG testing etc. Interestingly the majority of these foods are on the

Don't eat list for the Best Bet Diet. I have been following the Best Bet

Diet on top of avoiding all of my allergy foods since Jan 2005 and very

strictly since June 2005. I am very very sensitive to many supplements so

that has been frustrating even for my holistic doc/homeopath team.

I feel that my efforts at addressing dietary issues, reducing stress, no

longer doing my heavy business travel and now retired on SSDI are making a

huge difference. I also do mindfullness meditation and yoga daily and

physical therapy routine daily. My legs are very weak but with some wall

hugging, I am no longer using my walker for the past few months so I am very

proud of that. I also use small quantities of an edible form of medical

marijuana sent regularly by friends in a state where it is legal.

I find going to the neuro on top of this so frustrating, useless, and it

does nothing but make me angry especially when I receive the medical notes

associated with the visit. When I describe the natural approaches I am

taking to the disease, the doc just sort of looks at me and changes the

subject. So I ask what is the point and I wanted some assurance from this

group that it is okay to simply no longer go to these MS docs unless it is

needed.

Thanks all for your support.