AM I THE ONLY ONE??

[Dreams008]

I was dx with MS one year ago to the date. Prior to being diagnosed, I found myself getting trippy over my toes, but still able to walk fine after a little rest. MRIs confirmed MS with one lesion in my spinal cord and a few in my brain. MRIs have remained unchanged through the year. I have been on Copaxone, Tysabri, and now Tecfidera. Even though my lesions have not increased, my symptoms have greatly increased. I can now barely walk. I can barely use my right arm/hand for anything. Even typing this is challenging and I'm finding it's easier to use one hand typing than go through the discomfort of trying to use my right hand, which doesn't cooperate. I'm full of spasticity, get short of breath, have very weak legs that are getting hard to even stand on, have muscle twitches throughout my body, even though EMG concluded in April of this year that ALS is not the culprit. I'm wondering if I should be tested again for ALS. It's as if my hand and arm are paralyzed. I'm unable to move my toes. Every time I bring up my symptoms to my neurologists, they give me a look like I might be nuts. What I really am, is scared. Could I be one of the 5% who have the worst type of MS? Just my luck, but within one year I went from walking ok, to now barely able to make it through my house. And my right arm? Useless. Has anyone else deteriorated this quickly, even though MRIs remain unchanged?

[22cyclist]

It sounds like you have a brainstem lesion from the symptoms you are having. Sometimes they are very small and not initially detectable by MRI, it can take a couple of years. I have one that showed up on MRI, it was small, but it immediately left me with left sided hemiparesis (arm and leg), still have it, problems swallowing, talking, and extreme dizziness with nausea. This worsened over the course of the next three months. My MRI did not change. This occurred over the course of 45 days. From then on, approximately a year for me as well, I have gotten incrementally worse in walking, now have to use a power scooter, was initially using a rollator walker when it first happened. All I am saying is that you could have a lesion that is not detected by MRI in the brainstem region as your symptoms are in that region, and lots of those can be very small. Talk with your doc about this possibility.

I know how scary it can be to feel like you are going down hill fast. I am sorry this is happening to you.

Take care
Lisa
Moderation Team

[Dreams008]

22Cyclist...Thank you so much for responding. Yes, I have been told by my neurologist at the University of Miami that I have a couple brainstem lesions. She said this could be causing my symptoms. My neurologist in Naples, Fl said it's being caused be my lesion in my spinal cord. I never know what to think. All I know, is I'm 34 trapped in a 90 yr old body. Scary.

[JBWInColorado]

HugsHugsHugs.
I feel for you.
Hang in there and be strong, and be as positive as you can.

[tanya38]

Dreams008, you mentioned several treatments, but did they ever give you steroids for your symptoms? And do your neurologists specialize in treating MS patients? I ask because my aunt was going to a neurologist when she was 1st diagnosed, but he was not a MS specialist. She had been diagnosed for almost 2 years before he treated her with steroids, because I told her to ask him about them. She of course changed docs after that happened.

[misslux]

Sorry to hear.

I have PPMS and also progressed pretty fast. What has really helped me is both PT and OT. Can you see about getting some therapy from therapists that specialize in neuro rehab?

[hunterd]

Sorry to hear.

I have PPMS and also progressed pretty fast. What has really helped me is both PT and OT. Can you see about getting some therapy from therapists that specialize in neuro rehab?

i echo that, i am doing both now.

[Kimba22]

Dreams008,

I'm sorry you are going thru this. It's hard enough just to fully accept a dx within a year. I went from dx to a walker within a year with no change in my MRI. It has taken longer than that to affect my left arm/ hand, but is still scary.

I can relate to your comment about being trapped in a 90 year old body (more like 100 year old). I felt like a little old lady at an event for my daughter last week when an entire troop of boy scouts decided to come over to me in my w/c and give me candy.

I'd lean toward your MS Specialist in determining which lesion is the culprit. At this point, for me, it doesn't really matter anymore which lesion(s) is/ are causing my problems, since they are there to stay. I'm just hoping they don't get any bigger and I don't get new ones.

I've had a lot of spasticity and now have a baclofen pump. I don't know how much oral medication you are on, but this may be an option you can explore if you don't find relief from that symptom. It has been helpful for me.

I, too, am back in PT and OT. It's all about trying to keep the function I have, for as long as I can.

I'm sorry things have been happening so fast for you and I hope it all slows down & stops, soon. (((hugs)))

[KatieAgain]

I mentioned this in another post, but I will say it again, because maybe it can bring you some hope.

When I was diagnosed for a few years I was fine. Then literally overnight, my foot went numb. And then it moved to my knee. I could walk only a few steps until I would fall.

Then it started slowly progressing up to my arm and hand. And then my face and head.

It got to the point that I could not walk at all. I literally crawled on the floor. I could not hold anything to drink, it slipped through my hand. I could not feel! I could not wash my hair or stand up in a shower.

I was miserable, and the doctors were uncertain that I would pull out of it and that I was progressive vs. RR. Well...I did pull out of it, and it took a lot of PT and OT to get me back.

I did suffer some permanent damage. I can't run, I have a pronounced limp and my left hand, which is my predominant hand has nerve damage.

However, I came back and adjusted.

Could you have the progressive form? Maybe. But give it some time and don't give up hope that you will come out of it. That is hard to do...I know it is hard...I have been there and it is scary...very scary.

So I will Hope with you.

[Dreams008]

Tanya38...Yes, I've been on two rounds of steroids: Solumedrol and Acthar Gel. Both didn't touch me. Both doctors specialize in MS. I go to the University of Miami MS Center for Excellence and my doctor in Naples is involved with all the MS drug trials.

[tommylee]

I was dx with MS one year ago to the date. Prior to being diagnosed, I found myself getting trippy over my toes, but still able to walk fine after a little rest. MRIs confirmed MS with one lesion in my spinal cord and a few in my brain. MRIs have remained unchanged through the year. I have been on Copaxone, Tysabri, and now Tecfidera. Even though my lesions have not increased, my symptoms have greatly increased. I can now barely walk. I can barely use my right arm/hand for anything. Even typing this is challenging and I'm finding it's easier to use one hand typing than go through the discomfort of trying to use my right hand, which doesn't cooperate. I'm full of spasticity, get short of breath, have very weak legs that are getting hard to even stand on, have muscle twitches throughout my body, even though EMG concluded in April of this year that ALS is not the culprit. I'm wondering if I should be tested again for ALS. It's as if my hand and arm are paralyzed. I'm unable to move my toes. Every time I bring up my symptoms to my neurologists, they give me a look like I might be nuts. What I really am, is scared. Could I be one of the 5% who have the worst type of MS? Just my luck, but within one year I went from walking ok, to now barely able to make it through my house. And my right arm? Useless. Has anyone else deteriorated this quickly, even though MRIs remain unchanged?

As I read your post I was thinking to myself; That's a lot like what happened to me 15 years ago....

Then I started to read the responses you received; WOW!!!
22cyclist- Brain stem lesion, Check you are correct, I have that!

You are 34 but feel like 94??? Been there also.

misslux With the suggestion of PT and OT... Perfect! PT helped me more than any drug or other treatment.

kimba22 With the line; "It's all about trying to keep the function" or something like that...Great advise! That attitude has served me well.

katieAgain, With the testament of how PT and OT has helped her gain back some of what was lost... Could have wrote that myself. Lived a very similar story myself.

You have received some great advice here from people that have obviously lived this sort of thing themselves, so... I guess you are not the only one?

I was Dx at 34 years old. By the time I was 35 I had to take disability and stop working so hard.
It totally sucked!
I could not walk a straight line. My vision would fade away, my hands were clumsy and I could not control them well, numb from head to toe, muscle spasm's from hell, etc.

Well I am 49 now, I am in much better shape now. I did Avonex for a decade but have been on a very natural approach the past few years.

The only thing not mentioned that has played a big key in my recovery is diet. It took a few years of trial and error for me to figure out what works for me. It is trying and time consuming, but finding the right foods for me has helped as much as the PT.
Diet, exercise, PT, altogether has helped me move better at 49 than I could at 35.
No it is not all peaches and sunshine. I still have pain and a my body does not work the same as it used to, but the point is, My body still works!!!

(the PT I worked with specialized in stroke survivors, the same exercises worked well for me.)

Please try diet and PT. I does not work for everybody but it is something that helps many of us.
I have no medical training and am an expert of nothing. But I have lived with MS for a long time and have learned a few things that seem to work.

Praying that you have some recovery.

[misslux]

Yes definitely look at a healthier diet. It isn't a cure but staying as healthy as possible will help.

I always forget about advocating for diet since I was already healthy and had a very healthy lifestyle prior to MS.

[ENL2772]

Dreams008,

I was Dx in May 2013 with RRMS. Shortly thereafter the body-wide twitching began. It has not subsided and actually increased in intensity, especially in my calves. Did you press for an EMG or did the MS doc just do it? My doc insists it has nothing to do with MS but is not something more sinister. I, too, fear ALS. Does your Dr. connect it to MS or do you hear the text book response about CNS v. PNS and upper v. lower motor neurons?

Eric