CharlesHH

[CharlesHH]

Hello, I am a 53 year old male that was diagnosed in 2012 with rrms and is now in a progressive stage. I was on copaxone for 2 years rebif for 1 year and currently on retuxin every 6 months. I have tried every thing to slow the progression but have not found anything to slow it (i.e. diet,exercise,drugs,herbal). My walking has gotten a lot worse even when I keep pushing myself hard. Has anyone found something that helps with walking? I am on ampyra.

[dmaskal1]

Hello CharlesHH, I’m a 59 year old male who was diagnosed with progressive MS in 1987 and couldn’t take Ampyra since I’m also being treated for grand mal seizures I’ve experienced. I had trouble walking because I dropped my toe. I received physical therapy on the auto ambulator which taught me to walk without dropping my toe. Maybe you should try seeing a physical therapist?

[WAshingtongirl]

Hi, CharlesHH, like others here, it sounds like you were diagnosed 'later in life.' (I am not calling you old! I'm 58😉.) But I'm sorry to hear about your steady progression and how the drugs haven't done much to slow it down. Maybe ocrelizumab, expected to be approved next month willhelp. But I understand it is related to rituxan, so who knows...

Dmaskal1 mentioned a few things- PT and drop foot. Both are worth checking out. If you have drop foot (I do as well), you may need an AFO to assist you and prevent falls.

I walk as much as possible when I can. I feel that will help prevent muscle atrophy and it is my favorite form of exercise. But it can also cause muscle fatigue, and with leg weakness, falls can be an issue too. I walk with one or two forearm crutches (which provide better stability for me than canes do) along with 2 AFOs. Your neuro or physical therapist can better prescribe a safe walking protocol for you.

My motto has always been: Do it while you can!!

Wishing you the best. 💕

[CharlesHH in reply to WAshingtongirl]

Hi Tutu,I also use AFOs how do the crutches work for you.I was diagnosed later but I knew something was wrong I was told it was a herniated disc do to carpentry for 25 years.I have a PT I will ask her about them.Fatigue is my greatest enemy that will stop my legs from moving even when I tell them to move LOL!

[WAshingtongirl in reply to CharlesHH]

Are you now SPMS, Charles? I was RRMS and am now SPMS as of this summer. Still trying to figure what that really means. I guess we just slowly progress and don't have actual remissions anymore. 25yrs is a long time to go without a real diagnosis.

As for my crutches, I was told to use those 10-20yrs ago when I first had problems walking. My right leg would just 'give out' unexpectedly. The crutches provide me a bit more support because of the addition of the arm support. They are also adjustable in the arm area as well as the 'cane leg.' Maybe it's just because I'm used to the crutches and started with those rather than a cane. I recently tried a cane, but went back to my old crutch. I'll try to paste in the info on my crutches. But if the link doesn't work, look up adult full cuff forearm crutches at walkeasy.com. I hope you find what works best for you. walkeasy.com/shop/SubCatego...

[StacyHayward in reply to WAshingtongirl]

How did your doctor decide you've moved from relapsing to progressive? Trying to make that decision myself. I have very few relapses but I'm definitely slowly worsening.

[CharlesHH in reply to StacyHayward]

My MRIs showed no new lesions but my walking has become progressively worse. The therapy drugs especially Rebiff made me feel worse. My neuro switched me to Retuxin ever 6 months which kills your autoimmune B cells that are believed to cause increased MS symptoms.

[StacyHayward in reply to CharlesHH]

I haven't shown any new lesions either but my walking is definitely worse. Rebif and I get along fine though.

[Jbahnan in reply to CharlesHH]

Try AMPYRA, it really works for fatigue. GOOD LUCK in the future!

[Iona60]

My neuro mentioned that Aubagio has stabalized even some of his Primary Progressive patients.

[Hidden]

CharlesHH, it's MSFIGHTER welcoming you to this wonderful chat room. I have been on one of the drugs you have been on. I was on Rebiff inttally, but progressed rapidly on that therapy and my neurologist immediately pulled me off and put me on Tysabri. Rebif had a very bad track record as it had a high level of disease progression when it was being used. I cannot speak about your other therapies because I have never been on them. At the time that rebif failed me my neurologist put me on the drug that had the highest percentage of keeping relapses at bay at the time.

With you progressing so quickly have you thought about getting a second opinion from a different neurologist? There might be other therapies like Tysabri that would be more effective at keeping your relapses at bay. No that many Therapies do have higher risk of side effects, some potentially dangerous.

Has your current neurologist said anything to you about going to physical therapy. If he hasn't I would definitely push the subject. The physical therapist can do more to help you work on your walking than anybody else I know. They can get special braces made for you as well as other devices that can aid in your walking. Hopefully your neurologist has recommended you to go to physical therapy and it's getting it set up. If he hasn't or she hasn't it would be again another reason I would seriously consider getting a second opinion from a different neurologist. Charles I also have secondary progressive MS and the only thing that really helped me was working with the physical therapist. Unfortunately I have a secondary major medical condition and it's raising Havoc with my MS currently. I'm trying to get that sorted out butt due to insurance reasons we find ourself in today, I have had an extremely hard time getting anything done about the secondary or should I say primary condition.

We are glad you have joined our family. Next year early sometime supposedly March April May time frame there was supposed to be a new therapy coming out that for the first time is directed at secondary progressive MS. This therapy has shown signs that it can possibly even regrow myelin under certain conditions. Oh boy. That would be a real game-changer for people like you and me. All I can keep doing is praying that it comes out soon and that is effective for all secondary progressive MS suffers. Remember together we are stronger. Please keep in touch and let us know what your neurologist decides to do and what you decide to do. You are important to us and we look forward to you becoming an active part of this chat room!

[CalfeeChick CommunityAmbassador]

Wish I had some helpful advice, I'm new to having MS, just diagnosed in August and am still learning allot! Just wanted to welcome you to this site. There are many very knowledgeable people here. Also, very understanding as we all share MS. Keep on coming back here.

[Jbahnan]

Hello Charles, I got dx with RRMS in 09 neurologist put me on copaxzone, 5 years later it progressed to PPMS, neurologist put me on AMPYRA, it's the best medication I ever took. It REALLY works for me. GOOD LUCK IN THE FUTURE!

[Jesmcd2 CommunityAmbassador]

Hi CharlesHH and welcome to the best chat ever lm on copaxone so can't help you with the other meds but wanted to say hi and welcome. Hopefully you get the advice your looking for

You'll find that we are a pretty friendly bunch here. So please jump in anytime