OT October Chit Chat II

[agate]

Best wishes to Lady for a quick recovery!

Cherie, that's a shame about your eye. I hope you haven't lost any vision permanently in spite of the prediction.

Cataract surgery has been on a back burner for me for years now. If I had flashing lights, I'd definitely rethink my decision to postpone it.

Virginia, I hope your injury will heal up quickly. Is it one of those things where rest is good?

Ava (polava), I hope you can find some ways to get the stem-cell treatment. Does your doctor have any suggestions?
Welcome to this board!
(There is supposed to be an image showing below but so far it isn't showing up. I'm trying to fix it. Sorry!)

EDITED TO ADD: I changed the image. This one is from Photobucket.

[Frog42]

I got a free virus/spyware program at avast.com and that one doesn't expire after 30 days. You might want to check it out. :o

[Gary]

Welcome Ava and I hope that you will return often.

I finally have a Dx on my leg its MERALGIA PARESTHESIA aggravated by MS (what I have MS?!?) plus spinal stenosis which is pinching my sciatic nerve. They will not do anything until I get my teeth fixed which is happening next week.

Weather is just perfect cool sunny light breeze and since the pacific northwest is supposed to have a bad winter I am enjoying it now.

We are going to Boise this evening as it has been 1 year since my FIL passed away so the family is getting together for dinner. My daughter is having a Halloween party tomorrow night and we are invited she has been doing it for several years and we usually leave before it gets too rowdy ha ha. After all my wife and I are old!! She is adamant on designated drivers or you sleep on her couch or floor she takes everyone that drinks car keys away from them. A result of working in the ER and ICU she has seen the results of drinking and driving. Despite the fact that she is 5 foot nothing no one argues with her!!

Be healthy everybody.

[polava]

Hi all friendly people,
Thank you for nice welcoming (Agate image is showing)
my doctor do not want me to go thru the stem cell transplant since is not FDA approved, she think it is very risky and they just want take money from people who are desperate like me.
Was hoping Peg will give me some good news about any improvement
Thank you all Ava

[Lady]

Cherie and all, I was told by my MS Neuro, my eye issues were damage from O.N. My Neuro-surgeon/ Neuro-Opth fixed it during the cataract surgery, which took 5 minutes, plus prep, and post time for juice and cookies, because of conscious sedation and numbing. All the problems were from the one, darn, large cataract growing. My other eye is fine.

Now all is fine, TG. Yippee

Thank you everyone for the prayers and well wishes, I really needed them. As I said, I was afraid of my eyes being touched, especially surgery. :ambivalence:
Ann and agate thanks for giving me courage.

But don't hesitate if you need it done. Micro surgery, no stitches. Get a good eye specialist, Medicare pays for it. Eyes are precious.

[Jeanie Z]

]:) Hi everyone. Lady I am so happy for you. I had both eyes done at separate times but the one I had had the retina partially detach is still legally blind but it improved from 20/400 to 20/200.

Someone posted somewhere here about seeing flashes of light - get to the doctor immediately. It is not ON your retina is detaching.

Now Peg please let us know how you are doing from the stem cell treatment. Jeanie :)

[Cherie]

This appeared to be retinal detachment with the flashes and diminished visual field but it was a bleed causing the diminished vision and the flashes were the stress on the edges of the vitrious which ultimately caused the bleed. Left eye is about 1/3-1/4 the brightness with haziness of what the right eye sees. It is also the eye I've had ON in at least 8 or 9 x in the past. I am now noticing the flashes more in the dark than day light so I guess it is improving but the visual acuity is diminishing. That will fix itself once the blood reabsorbs I am told.

Last I heard from Peg about the stem cell, she was doing things she had not done in months or years and the transplant was only 4 weeks ago. I spoke with the folks from StemGenex and they said they have their first MS patient from last August who had been wheelchair bound for more than 5 years and within 6 months was using a walker then cane and had stopped needing a catheter. Her vision and cognition had significantly improved to the point where her husband was taking her to the WalMart parking lot to reteach her to drive and she was coming back in for a second treatment to see if she could get more improvement. The Patient Advocate told me that a year ago when they opened, MS was 8th on the list of conditions treated and now it is # 1. She also said that even if folks have cash in hand, if past results with treatment have not been robust, they are starting to refuse to treat. Most robust response is with MS. She also told me that if I changed my google search from domestic to International I would find much more on adipose stem cell therapies

I am told the FDA cannot enter into this because there is no product to be patented as each person's stem cells are exclusive to that person and cannot be used in another so the FDA cannot mandate who can and cannot get this treatment. but $10,000 is a high cost to pay and a lot of money to come up with.

If you had a 90% chance it would help you , would you find a way to come up with the money? What about a 50% chance? Where do you draw the line?

[agate]

That's such good news about Peg!

If you had a 90% chance it would help you , would you find a way to come up with the money? What about a 50% chance? Where do you draw the line?

Those are very tough questions! I was diagnosed back when there was no known treatment, and people were told to learn to get along with it and accept MS for what it was. That has been my mind set for so long that it's hard at this late date to think in any other way though I did bring myself to try Avonex and then Copaxone.

I doubt that I'd have tried them if I'd had to pay for them though.

I think Peg was diagnosed at about the same time I was. She must have had the same forecast I was given, and yet she moved on to the point where she could try stem-cell treatment. More power to her!

[Cherie]

These are questions I struggle with. I am now 17 years since diagnosis and 36 years since first hospitalization and the start of relapses and remissions. There is not a lot more wiggle room for treatment than what I have already done. Even the newer meds that are in the pipeline and may find approval in the next 1-3 years might not work for me. And I am getting old enough that I may be deemed too old to try something new.

If this treatment is as good as the company says (and Peg seems to be experiencing benefit) then it seems to me it should not be solely for profit and out of financial reach for the average person with MS.

[Lady]

Why should stem-cell not be approved for a treatment? I don't get it. They give people dialysis for diabetes, or blood is taken out, filtered, and pumped back in during surgeries. It is their own body product, so is stem-cells. No one is asking for a stem cells donation to use, or umbilical cord blood stem cells.

Just like CCSVI, they don't want to pay for it, yet it has helped so many people. How many can afford these procedures, even if the rate of improvement was 100 percent for both of these procedures? Why they rather pay for expensive drugs, that they rush through with fast-tracking is beyond me. :ambivalence:

A year's worth of Tysabri would pay for three individuals to get one or more procedures. Ty doesn't come with guarantees either. (sigh) It sucks eggs.

**** The haziness is gone in my eye. I was out in the dark last night, and I could see and read everything. I was like a kid in a candy store.***** They said I had night blindness. NOPE!

BTW, those that need the cataract surgery and go for it, the three bottles of eye drops you have to use for a month cost $45.00, $45.00 and $74.00 as co-pays for they are brand names. I'm sure they have generic for these. Rip-Off! Too late now for me, my DH picked them up prior to surgery.

My two cents worth.

.

[Virginia]

Great news about your eyes Lady. Now read some really good books!

Cherie, hope your eye problems turn out not to be serious. That is a serious question about how much to pay for Stem Cell. If one treatment cost $10,000.00 or a little more and then they say that if you come back for a second it will help you more it becomes a hard decision to make. Especially, if a person would be spending their retirement money. Because, for one thing, are the good affects real long lasting and what are the percentages of being helped and also what percent of help does one get? It can get convoluted.

I am hoping Peg will tell us all she can.

[Cherie]

My left eye has stopped flashing lights at me and the brown smudge in the center of my vision (old blood) is beginning to shrink and get less prominent. Had JC Virus test today. Part of Clinical trial ending 10/31/11 where they test PWMS annually for three years. Info gathering only.

[Virginia]

Cherie, are you saying that this trial just started and they will test you two more times for the JC Virus? I would like to be tested for that also. The group that my Neurologist is a part of is the Tysabri Infusion Center for our area. I am sure they would be doing this. Are you thinking you might go on Tysabri? Why are they testing 3 times?

Virginia

[Cherie]

This is the STRATIFY-2 Protocol Number 101JC402 trial that Biogen is doing to track JC Virus in people who are on or may be considering going on Tysabri. Blood is drawn annually for a total of three years to see if the virus is present in any or all of the blood draws. The current test has false positives and false negatives associated with it and I would guess by getting samples from 5000 persons as they plan to before October 31, 2011, it will allow them to establish a better database and potentially a better more reliable test.

Ask at your Dr's. Not all participate but they might know who is doing it if they are not. The test is also available commercially and I am told that Biogen is picking up the cost of the commercial test through Quest Labs.


I don't know if I will consider Tysabri in the future but my neuro wanted the test done in the event we need to look at further treatment options.

[Gary]

I agree Lady.

Cherie glad that the eye was not more serious that it was. You don't get "do overs" when it comes to your eyes.

I am going in for a bunch of oral surgery this morning. Between the MS and all the steroids my teeth are a mess. My PCP wants to see me on Monday as anything that serious tends to fire up the MS. He gave my wife his cell phone number with orders that if BP starts to go up he wanys to know. Ever notice that when you cant eat or drink any thing you really miss it?

Winter is on its way this morning it is 28 degrees and last night is the first time we lit the stove this season.Now my trees will start to loose their leaves. I wish that they would all drop at once. The last ones usually wait until the snow flies.

Be healthy everybody.