Don't go to the Cleveland Clinic for MS

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Don't go to the Cleveland Clinic for MS

Postby Brownsfan » Fri Sep 16, 2005 8:44 am

Just had an appt. today at the "prestigious" Cleveland Clinic after recently being diagnosed with RRMS. Went to see Dr. Cohen who reviewed my MRI's, history, etc. and, as expected, confirmed the fact that I have MS. However, the Dr. wouldn't even entertain the idea of prescribing LDN and in fact became visibly agitated when I mentioned it. I am convinced that many neuros are simply drug pushers working for the drug companies. They tried to sell me on Avonex as if it were a used car. Don't get me wrong, I'm ready and willing to start ABC therapy if necessary and don't discount the fact that it lessons symptoms in many people. However, I want (and expect) my neuros to have candid discussions with me on approved and alternative treatments. This guy didnt' fit the bill.

ps. I was also told in no uncertain language, that 80% of MS patients will end up in a wheelchair. Great MS Center we have here in Cleveland.
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Postby bromley » Fri Sep 16, 2005 9:49 am

Brownsfan,

On the wheelchair issue my MS nurse told me that only one in four end up needing a wheelchair. But I'm not sure how scientific these sorts of data are. Likewise, with claims that you have a near normal lifespan. Perhaps we should do a survey which asks how long since diagnosed and what aids are needed e.g. cane, wheelchair etc. But this would be skewed because those in a really bad way (bed ridden) probably wouldn't input and the more healthy ones probably don't spend too long on the internet.

Also there is a big question about future treatments - treatments which may prevent sufferers becoming more disabled or repairing the damage already done (perhaps by stem cells). So the 80% may be 20% in five years time - who knows!

Sorry about your experience with your MS clinic - but I'm sure your experience is not unique. MS specialists usually don't know too much about this disease - the MRI diagnoses for them and all they have to do is prescribe the CRAB drugs (I could do that!). No one ever walks out of their office cured or back to how they were before - but that seems to apply to any disease related to neurology.

Bromley
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Re: Don't go to the Cleveland Clinic for MS

Postby NHE » Fri Sep 16, 2005 5:03 pm

Brownsfan wrote:Don't get me wrong, I'm ready and willing to start ABC therapy if necessary and don't discount the fact that it lessons symptoms in many people.

The ABC drugs are intended to slow the progression of the disease. It would be a mistake, in my experience (just over 5 years on Avonex), to expect them to lesson any symptoms you might be experiencing. This discussion of other's decision making process regarding the different treatment options may be helpful for you.

It might also be a good idea to carefully review what other folks have posted here regarding the side effects of these drugs. In addition to my Avonex therapy, I have also made several other complementary changes to both my diet and my supplement regimen. I consider these additional changes to be important factors in my overall treatment plan.

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Re: Don't go to the Cleveland Clinic for MS

Postby HarryZ » Mon Sep 19, 2005 5:00 am

Brownsfan,

The Cleveland Clinic is funded big-time by Biogen. Some people on the net say that whenever Biogen wants some positive results from their MS drugs, they will have the Cleveland Clinic run some trials.

It's no surprise that the neuro wanted to place you Avonex, their first choice of MS drug!!

Harry
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Postby davwhi » Mon Sep 19, 2005 8:49 am

80% end up in a wheelchair? Bullsh...., I mean balogna.
I was first diagnosed 24 years ago and have only just started using a cane. I know 3 other people with MS and none of them are in wheelchairs either.
Some doctors seem to be more scaremongers than supporters. My very first neurologist was like that, so I only saw him once.
Find someone you like AND you can trust.
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Postby bromley » Mon Sep 19, 2005 9:21 am

davwhi,

Thanks for this post. The images we often see on websites are those with severe ms - either slumped in a wheelchair or bedridden. The EDSS gives one the impression that you just work through the scale until number 10 when you meet your maker.

It's good to hear that it doesn't always have to end up that way (or not in the short term). Can I ask what sort of MS you have and what you have taken for it?

Regards


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Re: Don't go to the Cleveland Clinic for MS

Postby bebe » Mon Sep 19, 2005 7:39 pm

Brownsfan wrote:Just had an appt. today at the "prestigious" Cleveland Clinic after recently being diagnosed with RRMS. Went to see Dr. Cohen who reviewed my MRI's, history, etc. and, as expected, confirmed the fact that I have MS. However, the Dr. wouldn't even entertain the idea of prescribing LDN and in fact became visibly agitated when I mentioned it. I am convinced that many neuros are simply drug pushers working for the drug companies. They tried to sell me on Avonex as if it were a used car. Don't get me wrong, I'm ready and willing to start ABC therapy if necessary and don't discount the fact that it lessons symptoms in many people. However, I want (and expect) my neuros to have candid discussions with me on approved and alternative treatments. This guy didnt' fit the bill.

ps. I was also told in no uncertain language, that 80% of MS patients will end up in a wheelchair. Great MS Center we have here in Cleveland.


Unfortuantely, I have heard this story many times. I think they have a disproportionate number of people in a wheelchair because they only prescribe Avonex- a therapy that has clearly shown to be less effective than others. More Avonex "research" is done out of the Cleveland Clinic than anywhere else in the world. There are many other clinics in Ohio that you can go to
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Postby davwhi » Tue Sep 20, 2005 10:17 am

bromley wrote:davwhi,

Thanks for this post. The images we often see on websites are those with severe ms - either slumped in a wheelchair or bedridden. The EDSS gives one the impression that you just work through the scale until number 10 when you meet your maker.

It's good to hear that it doesn't always have to end up that way (or not in the short term). Can I ask what sort of MS you have and what you have taken for it?

Regards


Bromley


I would now be classed as Secondary Progessive.
When I was first diagosed there was nothing to take, so for years only a few vitamins plus visits to a chiropractor and physical therapist. Lately I've been using Baclofen for the muscle spasms. My neuro still says the side effects of the CRAB med's would be worst than my current situation.
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Postby Melody » Tue Sep 20, 2005 1:46 pm

davwhi wrote:
bromley wrote:davwhi,

I would now be classed as Secondary Progessive.
When I was first diagosed there was nothing to take, so for years only a few vitamins plus visits to a chiropractor and physical therapist. Lately I've been using Baclofen for the muscle spasms. My neuro still says the side effects of the CRAB med's would be worst than my current situation.



Just an opinion but find another neuro who at least offers you some of the positives. Get to your local chapter and meet people you will find someone on just about all the meds in Ontario other than a few. :D It will show you they lead normal lives and it takes away the fear of the unknown.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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