Pulling it all together

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Pulling it all together

Postby bromley » Sat Sep 18, 2004 3:19 pm

Dear all,

I've been using this site for over a month now and am amazed by the knowledge of the various contributors - I must admit that my main reason for logging on once (or more) a day is in the hope of news that either the cause or cure has been found.

There seems to be a new theory for the cause every day and an announcement about a new possible treatment. What concerns me is that I have no idea who is pulling all the various research (into possible causes and treatments) together. Is there an overarching MS body who does this or are researchers doing their own thing in their universities etc? The Boston Cure Project appears to be doing something along these lines but are other bodies (government funded) doing this?

From my experience dentists, on the whole, have good teeth and opticians have good eyesight. My neurologist had no neurological problems (to my knowledge) and was insensitive to my concerns on hearing my diagnosis - he told me that I was a 'glass half empty' person and that I should plan for the medium term! I would be interested in hearing from anyone who knows of a neurologist with ms and what treatment they are taking / are planning to take.

Regards

Bromley
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 3:00 pm

Advertisement

Re: Pulling it all together

Postby Daunted » Sun Sep 19, 2004 4:49 pm

I've worked in medical settings and had to see my own share of doctors since these problems began- including some unrelated orthopedic problems, I've seen like a dozen doctors in the last couple of years. In my experience, neurologists are the bottom of the barrel in terms of people skills. One of mine was the bottom of the barrel, period.

I think the doctors who are good with people may be socialized into other specialties. I have no doubt that it takes a lot of intelligence and analytical skills to be a neurologist, but there doesn't seem to be any screening for empathy or lack thereof.

Finding a doctor WITH MS is a pretty cool idea.

Maybe it's just depressing to be a neurologist and work with people with MS. From what I can figure, they are decent at figuring out who has MS, and who doesn't- and they can write prescriptions for for symptomatic relief or one of the ABCR drugs. They have been well-trained at all that.

But ask them anything about anything interesting, or creative- such as diet, supplements, off-label prescriptions (e.g., LDN), antibiotics, etc., and they seem 1) incredibly uninformed about what goes on in their supposed field of expertise, and 2) unwilling to do anything out of the box, all the while reluctantly admitting that we don't know much about MS.

Anyway, good luck to you in finding a good neuro, and if you come up with any tips, let us all know- I am so irritated with my experience that I tend to spew out this tirade at the slightest provocation.

I'm going to a University MS Clinic at the end of October, and the guy I'm supposed to see is supposedly great. I'm going in with an optimistic attitude.
User avatar
Daunted
Family Elder
 
Posts: 271
Joined: Sun May 30, 2004 3:00 pm
Location: University Town, USA

Postby bromley » Mon Sep 20, 2004 2:43 am

Thanks - it's good to know I'm not the only one unhappy with their neuro.

The problem seems to be that their specialty covers a number of different areas - the neuro I was referred to has (I later discovered) a specific interest in Parkinsons disease. When I mentioned future MS treatments such as antegren he didn't really have any knowledge at all. The main neurological diseases - MS, Altzeimers (?), Parkinsons and MND all seem to elicit the same reponse - no cure...gets worse etc (this is what he said to me at the time of my diagnosis). To cheer me up he said that the ABCR drugs were pretty worthless and, in relation to the goats serum treatment, said he would never inject something that had come from an animal (but then he hasn't got MS!)

I don't mind the smugness of consultants who achieve things e.g heart surgeons but the focus of neurology seems to be on the diagnosis. Nevermind, when my neuro retires he will have his fat pension and look back on several thousand patients who he has never really improved the condition of.

Sorry for the rant - but this disease affects so much (health, family, job etc) yet I'm unclear who is driving forward the efforts to get back peoples' lives - it certainly isn't the neuro that I saw.
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 3:00 pm

Postby JFH » Mon Sep 20, 2004 4:39 am

Bromley

You might pick up a copy of Jelinek's book. He's not I Neurologist but an established medic (Prof Emergency Medicine somewhere in Oz) and he has MS. Some of his positive spirit stuff left me a bit cold (might be my mood?), but on the whole an interesting read. He evangelises Swank btw.

I think my short experience of these specialists mirrors yours my Nx is a New Variant CJD specialist I'm told. But I think I've moved on from looking to our local NHS for real support: I think can get more and better support elsewhere, like here! Time will tell!
John
I am what I am
User avatar
JFH
Family Elder
 
Posts: 288
Joined: Sun Jul 11, 2004 3:00 pm
Location: England

Neuro with MS

Postby art » Thu Sep 23, 2004 1:23 pm

Vince Macaluso in Flushing NY is a neurologist with MS. He's in midst of setting up a private practice so doesn't have contact info at the moment, but I can forward something to him if you want. Send to art-at-bostoncure-dot-org
User avatar
art
Family Elder
 
Posts: 102
Joined: Tue May 18, 2004 3:00 pm
Location: Waltham, MA

Postby bromley » Sun Sep 26, 2004 6:07 am

Thanks Art.

I live in the UK so US is too far to go. My interest is in what a neurologist with MS precribes for himself / herself - you would imagine that he/she would be taking the best treatment possible.

Bromley
User avatar
bromley
Family Elder
 
Posts: 1887
Joined: Fri Sep 10, 2004 3:00 pm

Postby art » Sun Sep 26, 2004 7:40 am

Vince is taking Avonex, and speaks at numerous Biogen events.
Since all the currently approved meds are about 30% effective, any benefit of one of the other is measured in a few percent which is unlikely to have a noticable effect in an individual.

Pick the one that fits your lifestyle the best, monitor your progress, and if you don't respond - change to another.

What I've just said may change once we get the data on Antegren.
User avatar
art
Family Elder
 
Posts: 102
Joined: Tue May 18, 2004 3:00 pm
Location: Waltham, MA


Return to General Discussion

Who is online

Users browsing this forum: No registered users