Erin,
Did your neuro refuse to let you take it? If you feel strongly about trying what the physiologist recommended, what's stopping you from giving it a try?

I say this because both my neuro and my PCP frowned on me trying the LDN, but after some persuasion, the neuro finally gave me prescription for a month. The rest is history and I wouldn't be without it. I've been on LDN for almost 2 years now. I even told the neuro how much it has helped me; especially with cognitive function. He has since changed his mind about it...at least for me. In his last letter to my PCP, he said that the PCP should carry on with the prescription when the one that I have runs out.

With love, Erika

He didn't say "no, you can't take it". He was warning me off for the cost of the Ampyra. I might just ask that physiatrist if I can take the 4-AP anyways.

I just feel like I'm having the worst week this week. (worst year) I'm just so tired at the moment. I feel worse almost every day now too. Starting to wonder what the heck is going on that things just feel worse all the time now.

I called my regular doctor about getting another prednisone taper, but no one has called me back about it yet.

like I said, I'm so tired that I can barely think straight.

Erin,

I've been taking Ampyra for 3+ months and it does help some people.
For me it was a miracle and has helped me with my arms, shoulders, wrists, fingers, neck and cognitively, as well as walking. At the end of my first 2 months I went 3 days without using my cane.

My neuro signed me up for the Ampyra program and I received 2 months free to see if it worked for me. It did so I turned it into a prescription.

My insurance has Ampyra listed as a Brand Name Formulary drug and covers it at $30 or 30% of negotiated price up to $200 per 1 month supply. Then I signed up for Ampyra's co pay assistance. They pay $160 of that $200 and I only pay $40 per month.

Without it I would have had to quit working after my Thanksgiving attack.

Since Ampyra is willing to give you two months free to try I don't understand why your neuro isn't signing people up to try.

From what I understand the compound he suggested for $60 is not always identical in efficacy and can vary from batch to batch which is why Acorda (sp) Therapeutics turned it into a sustained release tablet.

Good luck, I hope you at least get to try it. For the people it works for it is invaluable.

I might ask the physiatrist if he'll Rx it. He might not since the neuro wasn't really on board for it.

I'm kind of intrigued by it.

My new pcp has been a big help. Yesterday I had a lot of neuro symptoms and I thought I would be getting a phlebotomy, but there was a confusion at the lab as to what hematocrit I needed to have in order to have the phlebotomy. This was partly due to the old pcp leaving and the bad communication of the lab with the doctors. I had my eyes rolling back in my head when I looked at the computer, pressure in head, and weak legs. I knew this was probably because my hematocrit was too high (due to Polycythemia Vera) and that it would cascade into affecting my neurological weaknesses. My counselor said to call the pcp office and tell the new pcp what was happening. I got an immediate appt. and he changed my hematocrit level for phlebotomy to a little lower, so I was eligible for a phlebotomy today. Then he got me into the ATU because the lab probably would not have an opening this week. Not only this but he explained in detail to me why the neuro affects came about in PV when I not only had platelets too high but then got a too high hematocrit--it caused reduction of flow in the small vessels in the brain, thus less oxygen. He understood the whole shebang and even could explain it simply and completely. He not only gave me the phleb but he gave me half a bag of dextrose solution over 3 hours to fight dehydration.

I had been holding myself together with the low fat Swank diet, getting very rigid with it, trying to fight the neuro effects, but it finally got to the point where I needed to do something else. The other doctors have been lazy about doing anything, but this person was right on the "stick". So perhaps you wonder what this has to do with MS. I don't know but I know the diseases fit together and exacerbate one another if one lets them get out of hand. I am very grateful for getting a good doctor who understands things so well and will do something about it. I've certainly had my share of slow-to-act doctors as everyone on the forum has.

He sure sounds like a keeper Mariel.

I'm sorry that Sx's had to get to that stage though. Hoping and praying that you will be feeling better soon

With love, Erika

So glad you received the treatment you needed,
by an alert and compassionate Doc.

I've been better today, and I think the treatment yesterday helped. Thanks for your thoughts on this. I even took a walk today, as we had windy but not too cold weather, clean air, and not too bright sun.

started a new oral taper today. Would have started it last night, but the stupid pharmacy took forever to fill it.

So tired today. I don't feel like the steroids have done anything for me. If they hadn't had the normal really nasty taste to them when I took them this morning, I would have wondered if they gave me the wrong prescription. (I checked, they're oral pred) So far the only thing it's done is make me feel hot and sweaty.


My contractor called this morning. He found the door hinges that I asked for that make the doors swing open a little further, and gives a person two extra inches to get into a room. Pretty happy about that, since he either didn't hear me, or I didn't emphasize enough that I wanted a 36in door. He put in a standard 32in door.

I ordered six grab bars yesterday for the guest bathroom from Amazon Prime. It's not overkill. I have five grab bars in my bathroom that this contractor built for me a couple of years ago. I wanted six. (wanted four bars in the shower, he only put in three. Other two are just outside the shower in front of the toilet)

I actually have eight grab bars that I bought. Got the other two last week. I bought them from Amazon Prime for my bedroom. Did it as a test to make sure they were the same style that I already had.

I'm putting one of them in my bathroom next to my bathroom sink. Couple of weeks ago, I was combing my hair in front of the mirror while standing up, and I almost fell when I closed my eyes to comb my hair forward. My left hand immediately went to the wall when I did that. I decided I needed a vertical grab bar there. Seeing as how I have a contractor here, and he's got a drill and a stud finder, I'm going to take advantage of that. The eighth grab bar is going in my bedroom, where I'm going to put my little bike chair thingie.

I kind of figure, if I think I need a grab bar somewhere, I'm going to put one up. Our decorator looked at me funny, and she thinks we have too many grab bars already. Said if we ever sell the house, the grab bars will turn off buyers. (I don't think so. I'm trying to make our house handicap accessible for me and my parents. Not for prospective buyers 20yrs from now)

She's not the one living here, and she sees it from the perspective of a healthy person. I'm looking at it from the perspective of someone who always feels like they're going to fall. I'm also looking at it from the perspective of someone who's seen a relative fall and seriously injure themselves.

Excellent thinking, Erin!
I have a few grab bars too, four. That enables me to use the shower. Two of them were put in when Irv was alive, so he could pull himself upright from his wheelchair (the wheelchair I sit in a lot now). If I wanted to use the tub in the other bathroom, I'd need a couple more bars in the walls of the tub, to assist getting in and out. I understand that these could slow the sale of the house, but who's selling a house these days? My house has lost l/3 of its value because of the economy.