My Neuro Appt Today - Ampyra?

[anon07072023]

I had my follow-up appt today with my semi-new neuro. My 5 day IVSM was about 2 months ago and I told her I still have the same symptoms as before, so it didn't help. I've been trying to tell her and my previous neuro that since my symptoms started about 2 1/2 yrs ago, they've never gone away.  They're just slowly getting worse and affecting my walking more and more. I have a Dx of RRMS but I still think it's PPMS.  We have a 2-story house and I let her know that we've even considered selling it already, so I don't have to do the stairs.

My neuro said that maybe the Copaxone isn't working for me.  I can either switch to another DMD or try taking Ampyra. I opted for the Ampyra (since I think I have PPMS - why bother trying another DMD that might make me have flu-like symptoms - no thank you).  Has anyone tried Ampyra?  She's starting the steps now for me to take it - I hope I get approved. She's also adding Klonipin at night and keeping me on the 60mg of Baclofen every day.

When she did my neuro exam, she could hardly extend my left leg to a straightened position. And when I walked for her, she says I look like I'm walking on a rocking ship. (Afterwards, I said to my partner that I don't think that I look like that when I walk...then she said to me that it does look like when I walk, I'm trying to get my balance or something. Hmmmm. Apparently, I don't notice it myself ???).  Anyway, my neuro is having me start physical therapy for my "gait/balance/spasticity."  My first appt is already set for next Wed.

-Kelly  

[anon07072023]

Thanks Ren.  I have heard that before - about neuros not really wanting to limit your insurance coverage by labeling you as PPMS.

I wonder if the neuros really thought that someone might have PPMS, if they would tell the patient or keep it to themselves, since they wouldn't be putting it in their records.  

If my neuro thought PPMS, I would hope that she would at least tell me that she agrees with me, even if she didn't put it in my records.

Thanks,
Kelly    

[rendean]

Kelly,
Sho and others have given you a lot to think about. I do have one item I think was only touched upon and my doctors elaborated on in more depth for me.. Some doctors will not say you have PPMS because then insurance will no longer pay for DMDs or some other drugs.

I honestly think my neuro thinks I have SPMS due to my disease course or as I argued with him, I wasn't diagnosed until I was 47. The symptoms were there a LONG time ago but no one knew what it they were or brushed off as something else.

As for my most recent MRI , nothing has changed with it for the past 4 years. Few brain lesion, no visible spinal lesions, no black holes and "age-related brain atrophy. Perhaps, I too, have PPMS. Either way no one is going to give me the dx because then it will limit insurance benefits.

Ren

[anon07072023]

Thanks for sharing your experiences and some of what you know about it.  When the neuros keep telling me, RRMS, I don't get it either. How can I be RRMS when I've never had a specific relapse or a remittance, just a slow go of progression since the start. And none of my lesions have been enhancing.

My initial neuro did tell me that if I did have MS, it's just benign. Benign and difficult walking and constant symptoms, huh? Yeah...
He's the one that never moved me over to MS from transvers myelitis, even though I had lesions in my brain, too.

It's interesting and frustrating at the same time.

Thanks,
Kelly

[maxthecat9196]

Thank you for asking this question.  I don't know the answer, but a friend of mine recently recommended Ampyra.  So at least it worked for her.  I haven't tried it yet.  

[shoshin]

You got some good answers about Ampyra. Ampyra vs. DMD is a false choice since Ampyra is a symptomatic treatment. You can choose both.

I do have a few thoughts on the the PPMS question that might (or might not) be helpful.

1. IMO those categories are more arbitrary than the new patient lit makes them sound. RRMS, SPMS, PPMS and PRMS were created by taking a survey of MS neuros. They were created for grouping patients for clinical trials because the researchers had noticed that different types of patients seemed to react differently to potential drugs.

The four types have not been mapped to any underlying biological basis. There's not even agreement on what they mean. Some neuros think that PPMS is potentially a completely different disease from RRMS/SPMS. Based on natural history studies, some neuros think that SPMS and PPMS are the same thing only PPMS has had the RRMS phase truncated off.

The boundaries are also not clear. The RRMS to SPMS transition is generally only seen when looking back. Not everyone fits neatly into those four boxes. I don't seem to, anyway.

2. There's probably no point in fighting for a PPMS label unless you want to get in a PPMS trial. Since there are no drugs approved for PPMS, I don't see that there's any other advantage.

3. It's frustrating not to be heard by your neuro. I was dx'd by a peripheral neuropathy neuro (long story) who sent me to an MS neuro to confirm the dx. At the first appointment, the MS neuro told me I was RRMS and we had a long go-around because I couldn't map that on to my experience.

At the time I thought since he was the expert, he must know something I didn't. Now I think that, although he clearly knows many things I don't, he would have no way to know more about my experiences before I even met him than I do.

He said it was a relapse every time I got a new symptom. Do people with PPMS get all their symptoms right from the get-go such that those only get worse and they never get a new one? That didn't seem to make sense. More than the relapses, I really could not see the remissions. I did have one very mild sensory episode that presumably was a relapse and remission a few years before I knew I had a problem, but after that, it has been essentially progressive. Before considering MS, I would have described my course as something like a downward spiral staircase that occasionally looped back up slightly. Most of the time I was never sure if I was a little better or if I was just wishfully thinking it was so.

The neuro said I couldn't have PPMS because "those people" go downhill very quickly. I find the natural history of MS fascinating. After reading some of those studies, that appears not to be true, but there is a stereotype. In fact, they had trouble with some PPMS trials because they thought that the patients would progress more quickly than they did so the trials ended up being inconclusive since there wasn't enough action to prove anything.

4. DMDs are an individual decision. The first-line DMDs are not dangerous, but they are expensive, inconvenient and come with some unpleasant side effects as was discussed above. Even when he insisted I had RRMS, the MS neuro simultaneously said he didn't think the DMDs would be of much help since I wasn't having acute relapses and it is that acute inflammation against which the DMDs are most effective. Of course, he also thought I probably had benign MS and I don't think it's so freaking benign.

On the other hand, some neuros think that some of the CRAB drug trials with PPMS were under-powered and didn't prove anything either way. There is also evidence that the drugs were possibly helpful in a subset of younger patients or patients with enhancing lesions. So it might be worth a shot.

5. I hope the PT helps. It did help me with balance and somewhat with gait.

sho

[fortywhat2]

Hi Kelly
I was diagnosed with PPMS in 2008.  I never had flairs just falling down issues that I thought were just that I was clumpsy and memory issues that I thought was menopause until I fell at work one day and my boss saw (i worked in the medical field) and insisted on a brain MRI to find out why I was falling so much where lesions were found then on to a lumbar puncture and neuropsych testing which all pointed to MS.  I've never had any flairs just a steady slow decline.  I do not take any DMD's because the research I have done and the studies my neurologist has been part of show no difference after a year on DMD's vs no treatment.  I think the decision of using DMD's is a personal one and only you can decide what is best for you.  I do take Lyrica and Celebrex for fibromyalgia and osteoarthritis which I'm sure help with the MS.  Good Luck
Debbie
~live as if all your dreams came true~

[anon07072023]

Thanks for the information Ess. Those were pretty good explanations of the other DMDs.  You're right, I really need to do more research on these.  

You must be pretty tough if you're taking Avonex and it's a deep muscle injection.

Thanks again,
Kelly

[essdipity]

Oops, computer glitch. anyway

I have given only the most general facts about these, and the most brief. You should look these up on the web (try the NMSS). Also other good medical sites.

Aso to insurance, from what you say you clearly have private insurance. The other kinds involve government-paid or government-assisted such as Medicaid. I'm assuming you have prescription insurance.

The DMDs are the only way to slow the course of the disease, rather than merely treat symptoms.

Good luck with this.

ess

[essdipity]

Kel, the answer is this,

Avonex, Betaseron and Rebif are interferons. Avonex, my choice, is a deep muscle injection, and the other two are just below the skin. All of these can cause flu -like symptoms, but the big majority of users, find they can control these easily by taking Aleve or similar beforehand. Many also find that the symptoms disappear over time.

Copaxone is the odd man out. It requires daily injection of just subcutaneous med.  No flu symptoms, but but lots of site injection problem
that eventually resolve for most. Not an interferon.


These are the four that neuros put new RRMS patients on. I have given only the mo

[anon07072023]

L, do all of the other DMDs have flu-like symptoms and do they all inject directly into your muscle?  Both of those kind of scare me, especially the flu-like symptoms part of it, since I'm still working full-time.  

Also, what's considered private insurance? I have CIGNA thru my work - is that considered private insurance?  That's great for the feedback on Ampyra. My neuro did suggest if the 2 doses seemed too much, then we could knock it down to just one a day.  She also said that some of her patients notice a difference with their fatigue and have cognitive improvement. If either one of those could be improved with me, that would be wonderful.

Thanks,
Kelly

[Lulu54]

Kelly,

You could do another DMD   AND Ampyra.  You don't have to pick one or the other because they do different things.  I am on Ampyra and I think it helps but I only take my morning dose because the second dose in the evening really keeps me awake.

Ampyra has a great patient assistance program and no one on private insurance pays more than $40 per month.

I hope the Ampyra helps.
Lulu

[anon07072023]

Thanks for your feedback, I really appreciate it.  I see what you're saying, however, I've never had a flare or a relapse and I've never remitted. My symptoms just kind of started one day with spasticity in my left leg, and they have just progressed since then. It's been affecting my walking for maybe the last year where it's more difficult to walk up hills, and stairs, and walk for a long period of time (about 20 minutes).

I also fit more into PPMS with my lesions.  I have very few brain lesions - maybe about 6. I have multiple spinal lesions, T1 black holes, and brain atrophy.  

Thanks again,
Kelly

  

[Sumanadevii]

Kelly, please don't be too quick in jumping onto the PPMS wagon.  Remember my story.  I was sure I had PPMS.  My neuro refused to give a final dx until she had treated me a full year.  I had never remitted from the beginning of my symptoms.  Nothing went away.  Yes, sometimes after a flair things calmed by the total function never came back.  I never got a few months or weeks when things were back to normal.  My dx is PRMS.

A stronger DMD might just be what you need.  I took steroids each month for a year.  They would enable me to function then I would be right back from where I started.  I am on Tysabri now.  I am not ready to brag but it has been a little over ten weeks...with no steroids...and I am functioning.

You might consider it before throwing the towel in.  If it is PRMS you want to stay on a DMD or you will continue to just relapse without a break.  

The above is my opionion...only...