Promises, promises

[JerryD]

Who is sick and tired of the term 'promising' used when something new happens in MS research or drug development ? I am so sick of hearing this stuff. You all must know what I am referring to. I've heard it from every neurologist I have seen. And I have seen several. I've read it in the MS newsletters, publications and general newspapers.
Still all we see is a 'band-aid' approach to symptom relief.
The next time I hear this from someone, in person, I am going to respond "That's a good one". Then I'll ask "What do I have in my pocket"? Nothing !

[Thinkimjob]

I know you've got the worst version of this event, JerryD, and I send my deepest sympathies. I'm SPMS, and I for one think if the can't do anything about the disease they could at least come up with some better symptom relief.

Then I suppose if they can't help symptoms, they don't know what makes us feel so ghastly in the first place.

I'm sitting here with two red hot burning legs, an impossibly rapid trip to the lavatory brewing and a general feeling of hopelessness. This is not depression. Just reality.

(I do like the auto save, moderators!)

[Sir-Voor]

Personally I have not heard anyone promising anything, but I generally skip fluff stuff and just look at the facts and numbers. So I’m clueless as to that, so I’ll send my deepest sympathies and prayers.

Thinkimjob, you talked about symptom relief; well I know something that “may” help, no promises .
I was DX with RRMS in 2002, along with Copaxone, and started “Ampyra” in 2010 and it’s done wonders for me.
I know Ampyra is like all MS and that it does not work for everyone, but although they can only legally say it is for walking know I can do much more.
Although I think they call me a super responder, it has relieved my spasticity in my legs, brain fog, speech slur, numbness in finger tips (but not tingling) and walking/balance.

I recommend to all MSers talking to their neurologist about trying it, I heard it helps 35-43% of the users.

[JerryD]

Thanks for adding to the conversation, fellow MSer's, especially from 'Down-under'. The 'promises' are the actual words used in many conversations, press releases and seminars. And I had high hopes for Ampyra. It made me sick. But, on the positive side, I was able to get to the bathroom faster. I couldn't take the stomach upset.
So, I feel like I am tied in a commercial laundry bag, waiting to be kicked and pummelled. I hate this disease and am very suspect of the motivation of the business interests that have grown around it. Show me some meaningful progress or stop all of the promises. There is nothing worse than "guess what I have in my pocket".

[mercadies25]

promises?

I Am Sick Of The Promises And Definitely Sick Of This Disease!

Every Once In Awhile I Feel Slightly Hopeful Then Boom, Hey Lady You Have MS Don'tYou Forget It!

I'm On Several Sx Management Drugs And Tysabri, I Don't Feel Any Better And Now Can Barely Walk. Yeah, Tysabri Is The Miracle Drug. Not For Me.

This To Shall Pass, No It Won't

Good Luck To You Jerryd And All The Rest Of Us.

[JerryD]

I get that you know what's up, mercadies25. This disease and all of the universe that has built up around it just angers me. Yeah, you have the 'miracle', Tysabri. I have the 'miracle', Tecfidera. NASA would never put up with this kind of 'bull'. mS is a [problem to be solved. 500,00 Americans know it, but the medical world wants to fight a gunfight with a knife. I have lost faith that there will be anything great to combat this MonSter, in my lifetime. Good luck to you.

[J-Bo]

Sorry it's so discouraging, Jerry. Ampyra was a bust for me too. I can't remember if you have been in on the LDN thread, but I've been taking it for about six weeks. Nothing dramatic has happened yet like it seems to for some people, although I've seen some very minor things that I'm not quite ready to assert yet. But like you, there's really nothing else out there for me, and since it's safer than aspirin, I don't see a downside to staying with it a little longer. If the lack of clinical data for LDN leaves you underwhelmed, I get it.

The thing that really bugs me is that almost always, the hype over the new "promising" drug doesn't say if they know for sure it doesn't help progressive types of MS, or if they just didn't include any people with those types in the trials. (with the exception of Gilenya, and we know how that turned out)

Sometimes I wonder if PPMS is even the same disease. If it isn't, that might explain why the promises are never for us.

[JerryD]

Thanks for your input, J-Bo. LDN was the first drug that I used as treatment for my MS. My neurologist told me that he wouldn't prescribe it. so, I went doctor shopping for someone who would do it. I was convinced by knuckle's posts on this board. My new neurologist has no problem writing the script.

As far as PPMS being a different disease than RRMS or even being MS is something that I can't quibble about. There are certainly enough cases of this form of MS to align and compare the symptoms to 'known' disease forms. My hope is that there will be a positively 'life changing' treatment in my lifetime. Good luck

[thelegendlc]

Sir - Voor comments right on!

Your comments about the potential benefit from using the drug Ampyra was right on point. I am NOT eligible for the drug Ampyra because I cannot walk at all. However, I have been using the compounded drug 4-aminopyridine (active ingredient in Ampyra) for at least 5 years. It has provided numerous benefits two of the main ones are increased manual dexterity and improved strength in that I can transfer from my recliner to my power wheelchair. The drug is not covered by my prescription drug policy; however, it is well worth the approximately $70 a month out of pocket. As previously stated, this type of drug does not work for everyone; however, if I were you I would at least give it a try. For me, it has been a virtual "wonder drug."

[BJG55]

Some Hope

Jerry,
I do believe that the research and drug pipeline are often over-hyped; however, I have not completely lost hope. My cynicism is directed more at the pharmaceutical industry. If it weren't for other organizations raising money for MS research, those of us with progressive forms of MS (I'm SPMS) would languish even more.

So, I am still hopeful. I still think that stem cells hold promise for not just people in the earlier stages of MS. I had a bone marrow stem cell procedure done via Israli in 2010 when I was already SPMS. I had some positive results, including the ability to stand for longer periods of time and pain that I was experiencing went away. Although my walking never improved, and I started progressing again about 1.5 years later, I'm still pain free. Also, the experience gave me more hope.

I am currently in the Ibudoblast trial. Since it's through the NIH, I'm more positive about the process. I joined the trial because it allows me to continue to try and not have to be passive about this stupid disease.

[Waydwnsouth1]

It's easy to make promises but it's much more difficult to keep them. I've tried a lot of the promises and none of them have worked for me. I just stopped taking one of the BIGGEST PROMISES, TECFIDERA, absolutely no help, unless you call a major flare and numerous new lesions help. Now I'm getting ready to start the BIG PROMISE, Gilenya. Who knows what will happen with that.

With all the DMD's, three in total, I have been on this one scares me the most.

Don't promise me anything! SHOW ME THE MONEY!!

[Thinkimjob]

Way down south, in the land of Dixiie. (Yes auto ipad correct, sux big time. )

I'm a about to pony up up for DMD /T four. Beta, Copaxone, Aubagio (do not go there) and Lemtrada in May.

I have no confidence, really. Eight years rewind, they say. Mmmm.

Promised the world, be lucky to get a quarter acre in Kentucky. (And I like Kentucky. Big Justified fan.)

[Ikaika]

[QUOTE=mercadies25;1471498]I Am Sick Of The Promises And Definitely Sick Of This

I'm On Several Sx Management Drugs And Tysabri, I Don't Feel Any Better And Now Can Barely Walk. Yeah, Tysabri Is The Miracle Drug. Not For Me.

Wow, you are the FIRST person besides myself to find Tysabri isn't the miracle drug everyone raves about. I had tried it for two months and OMGDNS I had so many problems and side effects, it was awful!!!! When it finally got out of my system and I went back on my beloved Copaxone, had never been so happy to have my normal MS symptoms back!!!

I have never had issues with. Copaxone, thank you Lord!, and very few new lesions over the years, but MS specialist was insistent on me going on it. My regular neuro was neutral on it, but I tried with hop anyway. And yeah, no.

Anyway, blessings to everyone here and with MS in their lives and/or bodies. I still have hope and will still keep doing all I can believing! Keep at it fellow MS'ers .

[KSeraSera]

YES! And it does seem to apply to research a lot. I've lost count of the "promising" studies into what causes the disease. Seems there's a new reason every few months.

My other pet peeve is "may", may decrease lesions, may decrease relapses, may cause blindness, may ruin your liver. I know nothing can be 100% certain for every person, but seems the may help me and the may hurt me are about even in most cases. I'll risk the rest of my body for my brain when you tell me the risk will work.

And....my other pet peeve, why do so many of the drug ads show people riding bicycles, on top of mountains, gardening in the sun....it's like they've never met a person with MS! Am I so naive to believe that if I take your drug I'll be totally normal, no, I'll be super woman?

Thank you for your indulgence in my rant.

[JerryD]

KSera,
I am happy to read your rant ! I am surprised that there aren't more posts to this thread. I guess MSer's have been sufficiently desensitized to living on the back burner that there is no urgent feelings to rant about it. I feel differently. Good luck