Various symptoms slowly returning (rare, i am told)

[Christoff]

Hi everyone, I hope I am posting this in the right place.

I originally thought this might be related to Tysabri and posted about it in another thread, which the forums won't let me provide a link to here because I might be a robot.

About six months ago, I started to notice some old symptoms creep back into my life. They were very faint at first, but have gradually become more noticeable. The symptoms are primarily leg weakness and general fatigue. After having my MRIs done of my entire brain and spinal column, my neurologist concluded that there were no new lesions, therefore these symptoms could not be caused by MS (she concluded depression was the culprit).

Utter nonsense, I thought. I got a second opinion at the Mayo Clinic in Scottsdale, AZ. After reviewing the same data, they concluded that during my last MS flare (Summer, 2011) the affected nerves bounced back initially, but couldn't hold on in the long run.

Prognosis - it will probably get worse (but no worse than my last flare), it should plateau and with luck, begin to slowly heal on its own.

I was told that Tysabri is still doing its job and to stay on it. Additionally, I've been given an Rx for Ampyra, which improves nerve conductivity, to see if it lessens the symptoms.

The Mayo neuro reports that this phenomenon is rare in MS patients, but is not unheard of.

I am not thrilled with the news, but man I was fearing to hear something much worse.

Have any of you dealt with a problem like this or know someone who has?

Hope you are all doing well these days.

[Marco]

Hello! I hope you are doing well, but I understand the mental gymnastics and general frustration that MS symptoms can cause. Why oh why can't people have easy problems like the price of tea in china?

Depression/Anxiety/Stress can certainly be the root cause or the culprit in increasing symptoms. Is there any additional stress in your life that you are dealing with? It's a fair question, but it shouldn't be the default answer for anything a doctor doesn't quite know what to do with. Are you currently taking an anti-depressant? If you currently are not taking an anti-depressant you may consider it as a number of medications offer more benefits than simply combating depression. Depression is also fairly common in our community, but I also doubt that is the cause of the two symptoms you noted.

I am glad you got a second opinion and quite frankly would consider changing neurologists. MS is a progressive disease and new symptoms don't need a corresponding lesion to be the “culprit.” I find it sad when a professional is looking for a 1-to-1 correlation between lesions and symptoms. New symptoms do not necessarily correspond to new lesions and vice-versa. Not all lesions can be found on a MRI, especially at lower tesla ratings. Leg weakness and fatigue are classic MS symptoms that the majority of us regularly deal with. I hope you are eating correctly and have an exercise program to ensure you are controlling what you can. Some MS patients have significant improvements in walking endurance/leg strength using the drug Ampyra/4AP. I hope your results are magnificent. A number of medications are commonly prescribed that deal with fatigue including Nuvigil, Provigil, Amantadine and Ritalin. There are even some anti-depressants like Prozac and Paxil that may be used to treat both depression and fatigue.

Below are links from the National Multiple Sclerosis Society on both fatigue and walking problems:
http://www.nationalmssociety.org/abo...gue/index.aspx
http://www.nationalmssociety.org/abo...ems/index.aspx

As far as Tysabri goes, it's basically as "good as it gets" from a statistical standpoint. There will always be individuals that may do better on a different medication, but they are the exception and not the rule. Even Tysabri doesn't prevent all flares or progression, but any medication you would be changing to would have a LOWER expected efficacy than what you are currently on. How long have you been on Tysabri? Do you know if you are JCV+ or negative?

I really cannot comment about your expected prognosis as the disease is far too chaotic (especially in the RRMS phase). It’s not unheard of that a patient will have similar symptoms during flare ups or to retain physical or mental deficits after a flare. For example, some people have had a dozen or so flare ups with optical neuritis and retain visual defects even when not in flare. For me flare ups have zapped my legs and I too retain deficits. I would certainly work on strategies to combat and deal with fatigue and leg weakness. If you are a fall-risk please discuss this with your doctor. They may send you for a PT evaluation or work with you on other techniques to ensure your safety. I would just encourage you to fight against progression with mental & physical exercises, therapists, specialists, quality food, stress management, good sleep habits, etc, etc.

I wish you well ...

[MSer102]

I have nothing but respect for the Mayo Clinic, but I'm not quite sure I understand why the doctor said it's rare for people with MS to regain function and then have it fade out again. It's the nature of MS to be progressive.

Even if nerves remyelinate after a flare, the damage during the flare can cause enough damage to the nerve itself that it degenerates. And there's no treatment for degeneration. As my neuro-ophthalmologist told me, eventually there's enough damage done from flares and subsequent degeneration that the remaining nerve cells can't stand by themselves anymore and they start to fall faster because they don't have much support left around them. He was talking mostly about optic nerves, but the central nervous system is the central nervous system and the nerves are pretty much set up the same way and have the same support system everywhere. So I'm not sure why the doctor said that losing function after a recovery in a progressive disease is all that rare.

[SNOOPY]

I have nothing but respect for the Mayo Clinic, but I'm not quite sure I understand why the doctor said it's rare for people with MS to regain function and then have it fade out again. It's the nature of MS to be progressive.

That was my thought too.

After having my MRIs done of my entire brain and spinal column, my neurologist concluded that there were no new lesions, therefore these symptoms could not be caused by MS (she concluded depression was the culprit).

MRIs are a wonderful diagnostic tool. Unfortunately the MRI does not necessarily tell the whole story of MS.

It is possible for MS to progress or to have an exacerbation and the MRI show no new lesions. It is also possible to be doing fine, have an MRI, and new or active lesions show up. Sometimes the MRI will indicate and match how a patient feels.

Your Neurologist seems to not follow the first rule of thumb regarding MS:

Treat the patient not the MRI.

Yes, your symptoms can be caused by MS
If the Neurologist feels your symptoms are being caused by something else are you being treated for "something else?"

By the way, progression can happen without change on the MRI.