RE: Alternative Treatments

November 26, 2003

Edith,

Although there is no " cure " for PLS, there are several things that MAY help.

My doctor, who is the Director at the Phoenix MDA clinic has recommended that I

take 200 mg of Celebrex twice a day. This is because they are presently

conducting a study for ALS patients. The theory is that taking Celebrex may

slow down the progression. So my doctor feels that it is worth my taking it,

even before the results of the study come out. He also has me take 400 mg of

Vit. E twice a day, and Creatine. I don't know if these things are working,

but my progression has been very slow.

As far as Baclofen goes, I was taking it for a long while. The drowsy feeling

goes away after a while. I could not tolerate the Zanaflex. I could not keep

my eyes open. They kept telling me my body would adjust, it never did. I

stopped taking it.

Now the funny thing. I have recently weaned myself off the Baclofen, and to my

great surprise, I noticed an immediate and significant improvement in my

legs!!! I don't understand this, but I will discuss it with my doc at our next

visit.

Everyone is different. Different people with PLS present differently, progress

differently and respond to medications differently. After having PLS for 10

years I have found what seems to work best for me. It takes a little

experimenting. I find that having regular massage therapy helps as much as

any medications I take. I also go to a stretch and tone class at the senior

center. This has also helped a great deal. Most importantly, and I think

everyone here can agree on this, is that a good attitude is the best medicine.

Stress is the worst thing for your body. You will get to know yourself, your

limits and what makes YOU feel better or worse. Listen to your own body. I

say try whatever you thing may help you. Don't be afraid of what other people

say. Trust your own judgment. You will find the right balance. (no pun

intended).

We have all been there. Again, I know that there is no Cure for PLS, but that

does not mean there are not things that can be done to make this situation more

tolerable and help you to feel that you are doing SOMETHING. There are many

options, you just have to do what is comfortable for you.

Good Luck to you.

Bonnie G - Phoenix AZ

March 6, 2004

hmmmm! Afraid I'm with Pierre here, apart from fish oil which is far from

conclusive as I've read so far, I guess I'd need evidence before I'd support any

alternative alternatives .... erm if that makes sense?

Dave

Alternative treatments

Regarding a question from Jing son about alternative treatments:

Pierre Lachaine wrote:The short answer is: No,

they don't help.

I wish there were things like that that did help. Fish oil is sort of an

alternative treatment though. It was a health supplement long before it came

into use for IgAN.

Pierre

Pierre, do you really think it is helpful to patients to make a blanket

dismissal of alternative treatments, particularly when you appear to know so

little about them? There are alternative treatments that will help some

patients, just as there are those that won't help some. There are

treatments that will palliate but not cure. (The same is true of CellCept,

prednisone, Cytoxan, methyl prednisolone, ACE inhibitors, and all the

orthodox medical treatments for IgAN: none of them is curative.) And there

are treatments, like acupuncture, that may help ease pain or other problems

but won't affect the underlying disease process. (Ditto for orthodox

treatments.)

IMHO, anyone with IgAN should read up on alternative as well as orthodox

treatments. If I were in their shoes (and I was as the mother of a child

with IgAN), I'd opt for the least toxic, least potentially harmful treatment

first and see what the results were before going for bigger guns.

Unfortunately for most in this situation, the least toxic and least

potentially harmful treatments are likely to be found in alternative

medicine, not in the offices of most nephrologists.

I'm partial to homeopathy because it worked for my son and it worked for me

and it most recently worked for my dog, who now no longer has lymphoma.

Please don't be so dismissive of what you don't understand.

Peace,

Dale Hellegers

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March 6, 2004