Im in the same boat as you hun except Im 36 and Ive only really had walking issues. Im diagnosed as RRMS still, well I was just diagnosed in March. I have to use a walker or crutches to walk. My legs feel like they are incased in cement and I have horrible balance. My insurance wont cover any of the drugs so Ive decided to go drug free. Im seeing a hollistic doctor Aug 24th who specializes in LDN. I figure traditional medicine has let me down thus far so why not try something different...?

Oh and MSBuddy, please dont tell me that your big news is the healing power of prayer because I will puke. If your a salesman please go push your bullshit somewhere else. This is a site for people to find emotional support, not follow you on twitter.

Thanks for your reply Nahlie....it is always very cathardic for me to hear other people's stories. I really appreciate it. BTW - I did not mention it in my first post, but I am on LDN...and also Ampyra. I have been on LDN for 3 months and I just started Ampyra this week. I have high hopes for both.....but as of right now, I am still struggling. Good luck to you friend.

To MSBuddy - what Nahlie said!

Nahlie, you're cracking me up!

Beemergirl, I think that it all depends on where and when the damage hits a person and how active the disease. I have heard it said that if it hits hard when you are young and you don't get treated, it has more time to do more damage.

I'm almost 60 and still walking, although it's getting harder and harder to do so. I did not have noticeable symptoms until my late 40s. At 55, I was diagnosed and it's been going pretty rapidly like you. I can't walk a short block without a lot of time and trouble.

I am somewhat surprised about your DR diagnosing you so abruptly. My neurologist says theres not a good way to tell when somebody is going from RRMS to SPMS. I am convinced that I am SPMS. I think it's just something you begin to become aware of gradually, you know?

It's okay to be in denial. Sometimes it helps us cope. I deny EVERYTHING! ;)

I'll 3rd it MSBuddy.... go blow your stench elsewhere... if Prayer and Tylenol were a cure all, none of us would log in here...

I'll probably be hung on this one, but..
I'm not a religious person, and I'm not about to be one. This isn't an appropriate venue for all that.

Having said that...lol
Apologies..heehee, just couldn't let it go.

LOL... MSBuddy, you have 11 followers on twitter which is up from 7 earlier... Congratulations on sucking some people in. So according to your message on twitter, you are a "messenger". A messenger that is bringing great news for MS ? If it was that great then you would have said it already and you wouldnt be playing the game. Also you should consider changing up your post to people and quit using the same generated response to every post. Shame on you for messing with people's minds. Remember, Karma is a HUGE bitch...

Reply #1

Hey, tweety Bud.. you sound like either a snakeoil pitchman, or a Big Pharma pitchman, well, sort of either or both, not much difference. Either way, please, we don't need any more BS on DS, so here is my thought,,,tweet this, tweety Bud!


To the OP:

Okay, so, I would like it very much if you could tell me what the criteria for moving you from RRMS to SPMS was. I am looking at what i believe is a slow decline into that, and yet I feel that my doc does not want to say it, for alot of reasons, and I respect most of them. But i am really curious as to what exactly happened to cause this change in dx.

Did your doc write the script for LDN? Is this something you talked about before the change in dx? I think i am also a little confused...you were taken off the CRABs in around January of 2009 but have been on LDN for three months? Was there a reason for the long period bewtween treatments? Also, aside from the walking, have you had any other progression that you notice?

I am really interested in this as I am in a place that is somewhat similar..so any thoughts would be really appreciated.

Thanks!

Nikki - I guess my dates aren't exact....there was not a huge period of time between ending the CRABs and starting the LDN. At first sign of a decline in my mobility my neuro switched me from Copaxone to Rebif. Then I had a follow up appt 3 months later where I told the neuro that the side effects from Rebif were making matters worse.....so he concluded that it wasn't working and that there was no other drug for me to try. He reluctantly agreed to LDN. Besides the walking, I've noticed increased weakness in my arm and hand.....

Can I ask you why Tysabri was not considered? I realize that it is not for SPMS, so I am wonedering what your doc used to make that dx and therby, basically, rule out Tysabri.

I am just asking further like this, Beemer, because I have heard of few cases where just one flare will cause such a dx. I have a whole host of things htat are declining, dxd in 2005 at age 46 also with ON as cause of dx, also with lesions and postive tests as well as LP, so not that much different. I have suffered a decline in all areas, and my doc is talking Tysabri, and I know shje is thinking thsi is my new plato, my new baseline, but has really not made any comment of dx change, partly because that would rule out so many meds. You are younger, and unless there is something more to it, it just seems that all the new drugs are/will no longer be a possibility for you.

Do you have anything else, serious bladder or bowel issues, cognitive problems, anything else that might have contributed? And I am curious, did your latest MRI shoe new lesions, or was the thought that this was accumulated damage? And finally, what type of physical therapy are you doing, do you think that the weakness in your arms could just be from less use, and how long did your doc wait to decide this flare was permanent?

Thanks so much,

nikki

Nikki - I have no other major issues. I used to have mild bladder frequency issues, but LDN fixed that....and except for being constipated all the time - my bowel is fine as well. Also, I had a full battery of cognitive tests last summer and my results were above average "relative to a population matched for age and education". My last MRI showed 1 new lesion in the cervical spine. I think from the start of the decline in mobility to when my neuro took me off Rebif was about a year. As far as PT, I am still able to work full time - so there isnt any excess energy in a day for me to drive to a physical therapy office and such. I try to exercise on my own everyday - doing stretching and riding my stationary bike.but it is really hard to move when you cant really move. Lastly, only my right arm and hand are weak..so I dont think it is from less use otherwise it would be both. Hope this helps. I know it helps me to talk it out with you. :)

Wow, Beemer, I just got to say that I am more confused by things having to do with MS every day.

Your post made is sound as though you were somewhat immoblie, and so I thought that had something to do with it, but you can still work full-time, drive, and have above average on coginitive, have little or no bladder/bowel issues? I am really suprised that you are SPMS.

For one thing, any new drug that comes out that shows real promise, you are no longer eligible, although it sounds like you could really benefit from a drug that would help you keep your current status, at least as far as coginive and everything but "mobility," but again, do you have your car altered in anyway to accomodate your leg problems?

I am sorry, maybe I missed it or didn't ask clearly, but is there a reason that your doc did not consider Tysabri before going to LDN? Just wondering why not that tried first and then LDN? Tysabri has been found to help with some things, and now that you are SPMS, you are not able to try it.

While I would like to know where I stand, okay, sort of a MS joke there, I would be really concerned with being moved to SPMS if I wasn't, but again, I am trying to get at why your doc thinks that this is where you are.

My understanding is that this would be a description of your MS as it is now, and define a new baseline, so the suggestion would be that there is not really a possibllity of your body getting more, rather it would either stay where you are or get less. But it seems that overall, you have quite a bit, so that baseline seems really high.

Also, do you have any idea why your neuro waited a year of watching a decline, did not rx anything for the mobility symptoms, and did not change your med? For me, I have not had dramatic changes, just a grradual kind of "lessening." I think that if I could afford the infusions, my doc would have switched me right away to Tysabri a few months ago, nothing major, well, not really doing well with the injections, some side effects on that, but just a general accumulation and when you look at where I was a yead ago, and where I am now, it isn't like you would gasp, but it is like you don't notice a tree growing every day, but a year later when you measure it, you suddenly realize how much it has grwon, that kind of thing. Or like a house shifting on the foundation, very gradual. But measurable.

Sorry, maybe I am asking things that you just aren't sure on, and that's understandable, MS is really more questions than answers, isn't it?

Thanks again for any insight you can give me...

nikki

I guess everything is up for interpretation...and somethings get lost in translation. I consider myself to be somewhat immobile...because my gait is out of whack (I look like Frankenstein when I walk) and I cannot walk more than 200 feet at a time without a break....but I guess that is more mobile than others. My first neuro actually did recommend Tysabri, but I wasnt really interested in taking itso I got a second opinion. And my second neuro didn't think that I shouldn't try Tysabri so he switched me to Rebif. I thought that one of the criteria for being labeled SP was that the symptom does not remit.ie my mobility issues have not improved over the past year but like you have said about watching a tree grow you dont see it daily but when you measure it it has definitely grown. Same with my decline. (I really like that analogy.) There are definitely more questions than answers when it comes to this monsterI hope I was able to help in some way.

Thanks, yes, very much. I certainly hope that LDN helps you, maybe you could keep us posted? Lots of people here trying to figure out what to do next, sort of part of MS, right? Just when you think you have room to breath, another, "okay, what to do now" seems to come along.

Thanks again for all your answers.

nikki

I find this really confusing too. I got the dx of RRMS even though I questioned it since my symptoms never "go away". Ever. I have flares where things are worse and a steady decline. I definitely can't drive (my left eye had the ON and I can't see well plus I have a delay in it now so I cant tell when epople are coming at me), I certainly can't work (can't sit up more than 2 hours and can't stand for morethan a few minutes),and I def. can't ride a bike to exercise! I can barely take really slow walks aroudn my neighborhood. I just really don't see how you're SPMS when you're in way better shape then most of us here. And cognitive issues? Forget about it! THis last year its like im losing my mind! I had trouble dividing 60 by 3 yesterday! So..yeah, I'm not buying this dx for you. OR, my dx is wrong.

reply #15

So, I was wondering the same thing, and that is why I was asking the questions, trying to understand the reasoning. i am certainly not in a hurry to be SPMS. But I am just trying so hard to understand the whole "dx process." But here are some things to keep in mind...

By staying at RRMS, we have alot more options open to us, treatments that may come along. Also, trials. Now I know that we may be near to SPMS, but it is all so subjective, that if they do not make the call and we can get help or answers from trials or new meds, that is a good thing.

Also, insurance...RRMS is different than SPMS in some insurance matters, so we are better off where we are.

I was thinking also, is my doc missing something, or just not calling it? I think that maybe "not calling it" is her way of not boxing me in. She is leaving options open to me, and really, there is no huge, "OMG!" moment that makes it a clear thing, so if it keeps my options open, okay with me.

I think also that it is psychological. As I was discussing with Margie on another thread, it is not like we don't know. Like I told Beemer, I may not have noticed the tree in front growing each day, but it sure is higher now than last summer. But you know, in the winter, no leaves, in the spring, well, but now, all the leaves and it is just so clear how much it has grown. Same with my MS.

Things come and things go, but some don't, and every now and then, I realize all the things that are still here, and what is worse and what is better. I mean, not working has made me a little more able to manage and work with symptoms, but on the days when I have to leave early and get back late for any reason, I am aware of just how much more tired I am, how many times I had to go to the bathroom, how much my foot dragged as I got tired, how many words I garbled, what I couldn't qyuite grasp, all of this. So I know, it is nice that I don't have to get up and go to work every day, but when I have to get out and force myself to do a whole day, I am really shocked by what I can and cannot do, like a measuring stick.

I was told that with RRMS, there will be some things that go away completely, some that will go away to some extent, and some that will leave some permanent damage. And then there is the accumulation, the build up that just keeps rolling. It is not a direct or exact science.

But it my understanding there is less that can/will be done, in terms of meds and therapies, once you are dxd SPMS. So I am fine with this, but I know in my heart that I may have started to cross over.