I need real answers!

[Kquiz]

I was diagnosed with MS the end of last year and in Jan 2012 started on Gilenya. I don't know what I expected or even what to expect now but I want someone to help me understand MS. I hate to complain but I am physically worn out. My body hurts 24/7. I have vibrations daily. My feet burn. I can't lift my left leg to put on my underwear on and my back pain is unbarrable. I have memory problems that I have never had before.

Can you have this many systoms with MS all at once or is there something else going on? I don't know and I really don't have anyone to talk to about it.

Could you please share your experience with me.

[mercadies25]

good question

Well, I was diagnosed this Jan. I am on rebif now for about 4 months. Shots 3xs a week.

When you were discribing yourself it sounds just like me. I am suffering from all the same sx and then some. I call the neuro and he tells me there is no cure for ms just sx management.

I was driving the over day and was in so much pain I wanted to call him and cuss him out. Tell him his management of this disease sucks!!

I know it's not his fault but damn it.

Sorry I can only tell you that you are not alone in this battle but I can't help you get answers.

I'll be watching to see what others say.
Good Luck!!!!

[BigA]

That sounds like MS, as it can fool with any part of your nervous system. My advice:

Tingling: learn to live with it, but it may go away in time. Mine has calmed a lot over the years.

Fatigue: See your doctor - there are lots of medications for this. But the thing that will help a lot is exercise. You can swim if you otherwise have problems, but there are also exercise bicycles and my favorite, the elliptical.

Pain and Burning: There are also medications for this. I also recommend highly, Mindfulness Meditations for Pain Relief. It will change your life.

Weakness: That's an individual thing. It may or may not get better, but you should get Physical Therapy for it.

Back Pain: It may or may not have to do with MS. If you think it does (it can result from your leg weakness), then the PT will help. I would see a physiatrist at your MS clinic.

[GA_Girl]

Back Pain

Did you have back pain before starting Gilenya? Believe it or not but back pain is a side effect of Gilenya. I have never had back pain in my life until I started Gilenya. I have been on it for about 8 months now and the pain finally went away about a month ago. Maybe yours will go away too.

[Kquiz]

Thank you for the replies.

I had never experienced back pain before starting Gilenya. So I do believe it is a side effect. That's what I am trying to figure out....does it go away or does it continue as long as you take the medication?

I would love to exercise more but I ache so bad when I do it gets me down for days. Example I went to an arts and craft show today it was out doors and I walked around for a couple of hours and now I can bearly move.

I continue to read about relapses and don't fully understand because there hasn't been a time that I'm not having systems.

I take medication for the fatigue and it does help me make thru a full day of work but I feel like I'm missing out on so much of life.

[Kquiz]

And I am so sensitive to heat...I have the the ac on and fans blowing on me and still feel like my body is on fire.

[MsMarla]

A note re: Big A

Your advice is all fantastic and right in line with my experience. However, because I have had (what I consider) a lot of steroid treatments, they have affected my bones and now, I have osteopenia... Alas, good-bye elliptical, hello treadmill.

That sounds like MS, as it can fool with any part of your nervous system. My advice:

Tingling: learn to live with it, but it may go away in time. Mine has calmed a lot over the years.

Fatigue: See your doctor - there are lots of medications for this. But the thing that will help a lot is exercise. You can swim if you otherwise have problems, but there are also exercise bicycles and my favorite, the elliptical.

Pain and Burning: There are also medications for this. I also recommend highly, Mindfulness Meditations for Pain Relief. It will change your life.

Weakness: That's an individual thing. It may or may not get better, but you should get Physical Therapy for it.

Back Pain: It may or may not have to do with MS. If you think it does (it can result from your leg weakness), then the PT will help. I would see a physiatrist at your MS clinic.

[MsMarla]

Heat is evil!

My husband insisted that I answer you. I drive him crazy, changing the thermostat, fan, and OMG, in the car!!! My face is nearly plastered to the a/c. You are very much not alone with this one. I tried a cooling vest but it leaked the internal gel all over my clothing nag through to my skin! Ew!
My only no-fail escape Is a cold shower/bath, which does wonders!!! Gooooood Luck!!!

And I am so sensitive to heat...I have the the ac on and fans blowing on me and still feel like my body is on fire.

[rdmc]

I was diagnosed with MS the end of last year and in Jan 2012 started on Gilenya. I don't know what I expected or even what to expect now but I want someone to help me understand MS. I hate to complain but I am physically worn out. My body hurts 24/7. I have vibrations daily. My feet burn. I can't lift my left leg to put on my underwear on and my back pain is unbarrable. I have memory problems that I have never had before.

Can you have this many systoms with MS all at once or is there something else going on? I don't know and I really don't have anyone to talk to about it.

Could you please share your experience with me.

I'm not on Gilenya, but just wanted to tell you what you describe is, to me, the hardest part of MS. It's the part that nobody (except fellow MSers can understand and not all MS sufferers are affected with multiple symptoms at once)...but if you started to describe to a non-MSer everything that's going on in your body at any given time, they'd have a hard time believing it.

There's so much different stuff going on (going wrong) in so many different areas that one feels huge frustration at not being able to control the situation. I know there are symptomatic meds, and sometimes they are of great relief, but a lot of times, it takes months to figure out which one or what dosage works, and just about that time, the symptoms may change on you.

I think the dr's try to do their best, but they can't keep up with it all either. No real answers or advice other than to just try to address the individual symptoms and find a med (or therapy) that works for that one, and then move on to the next symptom and try to do the same.

Here's the good news...you're fairly newly diagnosed. They always say the first year is bad, and I found that true. I did recover my "symptom equilibrium" after I was diagnosed for about a year. Then it was dealing with a symptom here, or a symptom there. Now I'm years into this thing, and once again experience the frustration you describe, but for you, you might be pleasantly surprised and things might settle down and be more manageable.

Here's hoping....

[Temagami]

Am on Gilenya.

For me, the buzzing dropped significantly upon eliminating dairy from my diet (I do eat eggs). Recently I inadvertently ate dairy in a soup and the buzzing pulses in my foot woke me up from a deep sleep.

I have read a lot and believe that diet is a piece of the puzzle. I thought IŽd go nuts with the level of vibration that was happening prior to eliminating dairy. Give it a try.