I have severe osteoarthritis in my right knee and the 2nd orthopedic doctor I've seen has said I really need a total knee replacement. The problem is that this is on my GOOD side since my bad NMO weakness and spasticity is on my left side. I don't think I could do the rehab, plus who knws hat major surgery would do to my NMO.

So now I decided to get some intense PT for my knee (most painful PT I"ve ever had) and work with the therapist to see what she thinks about surgery. Of course, I'd consult with my neuro, etc. and pray for wisdom.

Anyone here have any experiences with arthritic knees or surgeries or anything else that might be helpful. Thanks for your responses. Kathi

Hi friends. I was diagnosed with Sjogren's via a lip biopsy done as part of my NMO diagnosis process. That was 4 1/2 years ago and I've never had much trouble with it except for some dry mouth. However in the last month I've developed dry eyes like you wouldn't believe. I've been to my opothamologist and he said they are suddenly VERY dry. I'm trying various drops now and then will step up to other remedies if necessary.

I have not changed any of my medications during the last few months and my drs. say they can find no other reason why this occurred. They also said that if this due to the Sjogren's, it MIGHT disappear as suddenly as it came on. I don't have any optic neuritis, but the close-up vision in one eye has worsened slightly since August.

I'd like to hear some of your experiences and advice on this topic, especially what types of drops you find most effective. It's also difficult because my arm issues keep me from decenly putting drops in by myself.

Enjoy your Thanksgiving. I'm thankful to the Lord for so many things, including for all of you. Kathi

I've been taking Ampyra (aka Dalfampridine, or extended release 4-AP) for about 14 months. It has really helped me with fatigue and arm and hand weakness (as evidenced by the fact that I now can type with both hands using capital letters, and before I could only slowly pick at the keyboard with one hand).

At any rate, for those that are interested, the company is holding numerous meetings to publicize their product. I went to one where they had appetizers and a speaker from a major medical center. By the way, he was very interested in my taking it as an NMO patient, since 99% of the people who take it have MS.

But I just heard today that they are also now holding Webinars about Ampyra. Naturally they're trying to get people interested in this script, and each of us needs to confer with our individual neuros. But I know that there are other people on our forum who have also been helped by Ampyra.

Go to Ampyra.com and look under events for the 72 meetings that are currently scheduled or the 12 Webinars that are scheduled.

Kathi

My insurance until I turned 65 was Cigna and they always approved my Rituxan for NMO and paid the 80% that my policy allowed with no appeals necessary.

When I turned 65 the infusion center said I would probably have trouble getting Rituxan since Medicare rarely covered it, and Cigna followed Medicare's policies so probably wouldn't pay either. However, I then was told this past August that Medicare now covers Rituxan as an approved treatment for NMO. So my treatment in August was 80%paid for by Medicare (at a hugely discounted rate) and then my supplement with Cigna paid their share of the rest of it. (Too bad they had to throw out 60% of the drug since I had such a bad allergic reaction that it was too dangerous to continue)

Anyway, for those of you having trouble getting approved, tell your doctor or nurse or infusion center about the Medicare policy. It might help. I hope so.

Kathi

Went for my 5th rituxan treatment yesterday. I've always been treated with benadryl and tylenol ahead of time and have never had any allergic reactions. This time they added 500 gm. of Solumedrol ahead of time in addition to the 50 mg. of IV Benadryl and the Tylenol. They infused very slowly to start, but after 2 hrs. suddenly my throat got tight and my face and neck were covered with hives and a red rash. The nurses stopped the Rituxan immediately, gave me more Benadryl and called the NMO specialist.

He came right away and was very surprised because of the premed protocol and that I'd never had a reaction before. He said most NMO patients wouldn't react like this-(-I'm always having drs. tell me I'm unique or special or weird!!0. Anyway he felt it was too dangerous to continue, even though i had only gotten 40% of the Rituxan. So I had to stay around for an hour to be observed for lessening of the reaction, and then sent home with more Benadryl. I'm supposed to see the dr. in Oct. to check on B-cell counts.

I'm glad I had had the pre-meds, or I might have been in terrible shape, but I wish i knew why this happened. Has anyone else had this happen?

Thanks for your responses. Kathi

In the past my insurance paid 80% of my Rituxan. Now that I'm over 65 and on Medicare my hospital was very discouraging about Medicare paying, and that my supplemental ins. follows what Medicare does. They said to expect a long appeal process.

But they told me this week that they found out that Medicare has now listed Devic's as one of the diseases for which they'll cover Rituxan as a treatment, and their request for me went right through, as did that for the supplemental ins. Thank you God. My appt. is Fri. 8/19.

I don't know when this change took place, but hopefully this info. will help some of you. The nurse kept saying "Devic's" instead of NMO; maybe that info will be helpful as well.

Kathi

While we all whine and share our difficulties, let's list some good things that have happened!!

For me it was spending several days at our son's home and being outside at the park with our 2 year old grandson. Also, I'm blessed that none of my 5 grandkids seem to mind at all that I'm in a wheelchair and can't get down on the floor to play, etc.

I recently was in the hospital for several days for a severe intestinal problem (my first ambulance ride to get there-it was bumpy!!) The doctors and nurses were great and I'm OK now except that I can't have caffeine or ibuprofen or NSAIDS.

However a lot of the aides just didn't get it that I couldn't turn over in the bed by myself and that I couldn't get comfortable being on my back. I kknow this is a small thing in the scheme of NMO problems, but it added to my hospital woes.

Then, you know how we're always told to have a complete list of medications, vitamins and supplements when we go to any doctor. So I dutifully gave my list to the hospital. The staff dutifully had my list checked by my drs. and the pharmacy sent up every pill I take. The problem was that they included every vitamin, calcium pill, etc. and I was charged $750 for all the stuff that was not prescribed by the attending drs. for my current problem. Medicare did not pay for any of these pills, and the supplement only paid a portion of these outrageous charges. How do some of you handle this problem?

Also, the bottom sheets this time in the hospital were the disposable waterproof kind that make one sweat and are very uncomfortable.

Enough venting, but you people surely will understand.

Kathi

This increased sensation has been bugging me for awhile now. Here are things I've done:
Increased my Neurontin

My private insurance company Cigna has always paid for my Rituxan at 80% of the hospital negotiated price. However now I am 65, so am on Medicare with Cigna as the supplement. I see my neuro in June and will probably be told I need some more Rituxan. I talked with the infusion nurse and coder today and they were not encouraging. They said that in their experience Medicare does not pay for Rituxan for NMO because it is off label. They also said that in 80-90% of the cases the supplementary policy does not pay either because they follow Medicare's decisions on this.

Help. I need some of your experiences and expertise at how to proceed before I get outright refused. Thanks. Kathi