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Standard of Care

Trudy brought up an interesting perspective in another thread regarding the medical profession itself contributing (even if inadvertantly) to adjustment or adverse emotions for MS patients.

That brought to mind that perhaps some people might not be completely aware of what kind of treatment they can and in my opinion, should expect from their medical care professionals, as a minimum.

I thought I would just post some items from the American Medical Association. I will ...
Read more : Standard of Care | Views : 1344 | Replies : 2 | Forum : General Discussion

Here come the lawsuits

Well, we all knew this was coming. The class action lawsuits. And so far these are only pertaining to securities on behalf of investors. What the SEC will do is anybody's guess right now, not to mention what Biogen may be facing from negligence, wrongful death and/or personal injury lawsuits. Just fighting these alone will cost Biogen millions, I'm sure.

This first one was interesting to me, of course, because this one includes the "allegations" ...
Read more : Here come the lawsuits | Views : 8684 | Replies : 37 | Forum : Tysabri (Antegren or Natalizumab)

PML timing

The following info about the two PML cases associated with T was recently posted in BrainTalk:

Case 1- The person who died had 37 doses of tysabri along with avonex. The last dose was on jan 15, 2005. On Dec. 4 she experienced right-sided weakness and aphasis, which was initially considered an MS relapse. She had two courses of on Dec. 4 and one on Jan 5. Symptoms worsened...hospitalized 12 feb....was non-responsive.....etc..etc..etc..subject died 24th ...
Read more : PML timing | Views : 2154 | Replies : 5 | Forum : Tysabri (Antegren or Natalizumab)

The "Human Interest" Side of MS Desperation

The "human interest" side of this whole Tysabri thing is fascinating (and somewhat troubling).

Tysabri was approved for mild or RRMS, not any type of progressive MS (which progressive types don't usually involve inflammation anyway). We have now gotten "indication", not proof yet, but definite "indication" that Tysabri may be a little risky.

Ok, people with mild or RRMS are showing themselves (at least to me) to be extremely more "desperate" than is rational given ...
Read more : The "Human Interest" Side of MS Desperation | Views : 3280 | Replies : 18 | Forum : General Discussion

One more favour to ask

Some of you may know that in the week before the London Marathon there is the Flora London Marathon Exhibition at the Excel Centre in Docklands from 13th to the 16th April.

Here all Marathon runners register and pick up their running numbers and "chips" for their shoes.

Also there is a massive exhibition by all the sportswear companies, charities etc.

The MRSC have a stall at this Exhibition, and they have a prime position. ...
Read more : One more favour to ask | Views : 1206 | Replies : 0 | Forum : General Discussion

The new me :O)


Oh, and the total has gone up quite dramatcally:O)

Thanks to everyone who has donated so far, I have 6 weeks left to raise that total to the aimed for £15,000, so please spread the word!

squiffs :O)
Read more : The new me :O) | Views : 1128 | Replies : 0 | Forum : General Discussion

Symptom specific forum topics


Great board. Thank you SOOO much!

I was wondering if you would consider discussions on different areas, or body systems:

- eyes
- bladder
- muscles

etc. :)

It helps a lot to hash some of those things out with others who have experienced / are experiencing the same.

Thanks for the great service!

Read more : Symptom specific forum topics | Views : 2654 | Replies : 0 | Forum : Suggestions

urologicals ... "hoses" for all of us who need the


Probably one of the spookiest or least talked about topics are the bladder or incontinence issues that affect so many of us MS'ers.

For catheters and supplies, I have found this site to have good variety (I use a small Mentor product).

If anyone is new to ISC, shy about it, know they should be doing it or just need to chat -- I'm an expert. Been there, done that.
Read more : urologicals ... "hoses" for all of us who need the | Views : 2925 | Replies : 0 | Forum : Shopping

The HUGO Rolling Walker

I found this assistive device and will most likely be getting one for myself (as the heat kicks my butt and everything seems to lock up past a quarter mile in the heat):

The product sells for $155 and seems to be a great deal. ROCKIN'! No shame in a little assistance! :-D

Description from the site:

That's what the ...
Read more : The HUGO Rolling Walker | Views : 2893 | Replies : 0 | Forum : Shopping

Keeping my fingers crossed!

I have been given a chance to participate in the camms224 trial. After carefully weighing up the potential risks and rewards I have decided to go for it. Campath is certainly at the extreme end of MS treatments with some pretty scary potential side effects, but the chance to potentially stop MS in its tracks is far too good to pass up whatever the risks.

I have to have a series of blood tests next ...
Read more : Keeping my fingers crossed! | Views : 4458 | Replies : 10 | Forum : Campath (Lemtrada, Alemtuzumab)


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