EVERYDAY HAS TURNED INTO STRUGGLE

[Waydwnsouth1]

Since I have stopped taking DMD's I have noticed that everyday has become more of a struggle for me. The pain has become so bad that the narcotic pain killers I take barely take the edge. I have also noticed I am having more trouble concentrating, and my memory has become worse. There are more problems I am having but I'll just leave it at that.

I don't know if this can be attributed to not taking DMD's or not but I attribute it to my MS progressing. All this started about a month after I got off my last DMD. My Neuro made the call to stop DMD's because every time I had a MRI there were new lesion activity.

My life has become a living nightmare. I know when I wake up every morning I will have a problem, it's just a matter of which one and how bad. It's as if I am being eaten from the inside out. I know that's a terrible thing to say but that's the only way I can describe. BY the end of the day I am completely worn out. Wednesday I went to bed at two in the afternoon and did wake up until seven the next morning. With that much sleep one would thin all would be well, but that was the fact. The pain in my legs was bad I could not concentrate to even drive. My speech was horrendous and I was having trouble walking.

Well I have cried enough so I'll close now. This is an every day thing and I'm slowly getting used to it. Well, as used to it as one can get. This is one unforgiving disease. It doesn't care how you feel, it is still going to work you over.

God Bless us all that have to live with this dreaded disease. I never dreamed I would end up like I am. This wasn't how I had my life planned, but MS doesn't really care!!

[22cyclist]

I am so sorry this is happening to you! I just wanted to let you know that someone cares and we are listening. Is there any way you could get a second opinion? He should at least be giving you steroids once per month for the lesion activity.

Best of luck friend. I would seek a second opinion like I am for my Tysabri.
Take care
Lisa

[jreagan70]

Hi Waydwnsouth1:

The other thing that's very sad -- that you're not talking about -- is that your neurologist appears to be clueless about MS and not qualified to treat you, but you like him so much that you're settling for that and letting him get away with it. But you're the one paying the price, not him.

I've been reading some of your earlier posts, and it seems like your decision not to try any other DMDs is based purely on fear and a lack of information. And that can trace directly back to your uninformed neurologist.

You've said that you "can't" take Tysabri because you're JCV+. But that's incorrect on two counts.
First, there's only one test that's recognized as being accurate enough to judge by is the one used in the STRATIFY trials and endorsed by Biogen. If you had that test, you would and should know.

The second issue isn't just whether you're JCV positive or negative, but what your actual titer is that indicates your risk for developing PML. But your posts have never said anything to indicate that you're even aware of the titer. Would it make a difference to you if you found out -- with the correct test -- that your titer is actually low and you're a good candidate for Tysabri, the most effective MS medication available?

The same thing applies to other DMDs. Between the lines of your posts is the indication that your neurologist doesn't know enough about other MS treatments, so you don't have enough information to base decisions on, so you're making your choices based on fear alone.

Without a DMD (one more effective than the ones you've been on), you have NO chance of slowing progression. With a medication like Tysabri or Rituxan or Cellcept, you have SOME chance of slowing or stopping progression, possibly without unbearable side effects. Are you sure that you want to give yourself NO chance?

What I find so sad about your situation is that you've chosen to give up on possibly making your life better based on fear and misinformation and an unexplainable soft spot for your neurologist, rather that looking into making your life better with real information that could come from consulting an MS specialist.

Your state has an MS center that's in the directory of the Consortium of MS Centers. That's the organization that offers a certification of MS specialists. With so many other treatment options available to you, do you really just want to give up when you know you don't have enough information to base an informed decision on?

Your situation has touched me. I'd like to see your sadness lessened. Maybe that can happen if you start opening some of the doors available to you, without the fear.

[KatieAgain]

I had to hit rock bottom before they could convince me to take TY. I am just glad it was not too late. I have had two flares on TY, but no progression and it lowered my EDSS.

I am now much more afraid of MS than PML.

I would explore Tysabri a bit more and make an informed decision. Keep in mind that most drugs, even OTC have serious side effects. Taking TY for 24 months to get you stabilized could be an option for you...or maybe not.

Then when you are done with TY, maybe Lemtrada will be your next step.

Bottomline...you have options. You need to make some hard decisions to try and stop this vile disease. Sounds like you are closing in quickly on " rock bottom" too. I hope you don't allow yourself to accept this as your new normal without a fight.

[Thinkimjob]

Hello. It doesn't seem like the DMD/T-free path is doing you any favours. If I were you, I'd speak to my old neurologist, or find another one.
There are new drugs; so don't give up.
Good luck.

[hobbit]

I understand.

For some Ty seems like a wonder drug, for me not so much. On it for one year the lesion pressing against my brain stem has gotten bigger and I'm now JCV+ (titer 3.37), I had zero improvement on this drug. Per my Neuro, JCV is a game changer. We discussed the "rebound effect" and decided steroids will just lower, my now shot, immune system even more. There aren't any treatments out there that aren't totally invasive at this point. Treatments that are more damaging than my MS or that are reactive with JCV.

We are treating symptoms. I'm ok with that, I've done my homework and I an not willing to trust treatment options based on hypothesis and neither is my doctor.

I expect the next 6-8 months to be rocky. I get up in the morning wondering when I can take a nap, my list of thing to do has gotten very short, pain meds take off the edge but also knock me out. I wake up every night, my body twisted in spasms. Everyday has it's own new set of challenges. I wish you the best of luck in dealing with yours.

Peace,
Anna

[Waydwnsouth1]

I appreciate all the answers and concern. I have taken several DMD's all to no avail. As for TY I made the decision not to try it. I have researched all the other medication on the market and it seems to me they can do more damage that what MS can do its own.

As for steroids, I can't take them. The first and last time I took them I ended up in the hospital and in consultation with my Cardiologist my Neurologist and myself realized the risk was greater the reward.

Right now I am comfortable with the way things are so I guess I shouldn't complain. I made my bed so I have to lay in it. It took me ten years to finally arrive at a diagnosis and throwing another doctor in the mix will just muddy the water in my opinion. My DW agrees. In time my opinion may change but for now that's where I stand.

So I'll stop complaining and take it as it comes. Again thanks for the various opinions which I will take into account should I change directions.

[Waydwnsouth1]

Hobbit, your post hits the nail on the head for my though processes. My Neuro and I have discussed Lemtrada, Rituxan and other choices and we came to the same conclusion you and your NEURO came to. Like you we are treating the symptoms and I'm ok with that for now.

[jreagan70]

Right now I am comfortable with the way things are so I guess I shouldn't complain.

I think that's an excellent insight. Complaining is a sign that you're NOT comfortable with the way things are. And you can't be comfortable with things and not comfortable with things at the same time. It doesn't go both ways.

To be comfortable with the way things are, and convince yourself that you are, you have to think and act and talk like a man who is comfortable with the way things are. If you don't, the contradictory energy will keep you stuck and maybe even take you backwards.

Being comfortable about your decisions is something you can be pleased about. And by focusing on things that please you and not on things that don't (like... oh, complaining), you'll be able to move forward. That's the difference between people who have learned how to live well with MS (no matter how bad it is) and those who haven't. So now that you've made decisions you're comfortable with, onward! :-)

[KatieAgain]

I think complaining is O.K. I totally understand your decision to not take any more DMDs..the DMDs are rough and it is a very personal choice. I have been through the ringer with DMDs. In fact, I am on Tysabri right now just for maintenance. Since I am still having flares, I am going to have to switch within the year either to Rituxan or Lemtrada...and it is scary.

For most of us DMD or not...MS is not a walk in the park.

And BTW...you did not make your bed with your decision. None of us asked for this disease and none of us deserve this disease. You don't deserve the flare you are in or the misery that accompanies it.

I hope your body heals soon and you can enjoy life again. And if you need to complain, please do so.

[mercadies25]

I have also tried ty and am not happy with it. like Hobbit and yourself. Maybe you should not have said "COMFORTABLE" with the decision and should have said ACCEPTING of the decision. I have been off ty for 2 months now. I am not comfortable at all but, for now I accept how things are. I don't like it I don't want it this way but for now it's ok. I don't want to experiment with everything out there. O a, JC- I just don't feel that ty is working for me.

Don't be so hard on yourself, give yourself a break and then think about trying something else MAYBE!!!

GOOD LUCK!!!!

[Waydwnsouth1]

Again some excellent insight. It's not what you say but how you say it. I should have said I have accepted my decision. It wasn't made lightly. I did my due diligence in researching the other DMD's that are on the market. And had long conversations with my neurologist before deciding to get off DMD's.

Everyone has made some very valid points. I will keep them all in mind as I move forward. None of us deserve this horrible disease and the drugs we take can be just as bad or even worse at times.

Good luck to one and all. Onward I will go!!