feeling crappy

[marymoto]

ok after being diagnosed with benign ms i still have nerve pain, numbness on my legs, fatigue now i am thing this last relapse has lasted a long time as i am still very fatigued tired i still have weakness in my legs and tire easily maybe i have something else as with ms would i still be feeling so crappy for so long?

[rothexl]

I've been dxd with RRMS about 4 1/2 months ago- and at that time also had my first scary flareup (in hindsight I had one 2 years ago with numbness, but I was told back then that it was "psychosomatic").

I hope it can give some reassurance to you that for me it has also been dragging out a lot, too, it seemed as if a symptom (for example vertigo attacks) started and stayed for 2-4 weeks, then went and a new one came, or sometimes a symptom didn't fully disappear and that kept going for several months- and I also had lots of times where I felt as if all the energy had been drained out of me- that was until about 6 weeks ago.

I still got some more minor new stuff going on now and some sxs that seem to have stuck, but fluctuating- and am also really unsure what that means or whether that is a new episode etc.- but my neuro says he is very certain that I've got RRMS, so I try to relax as much as possible (not always possible of course).

I really hope you'll feel better soon! -BTW, are you already on a DMD? My experience is that I feel a lot better, just knowing that I'm doing something.
Hang in there,

Rike

[meg321]

Sounds interesting , benign MS..I would foolow all advice given so far..

hugs, meg

[Sparkysarah]

Thanks for your post....I found it personally helpful reading everyone's comments particularly about the first year.  It is only 3 months since my dx of RRMS and at the moment I feel like I am swimming with arm bands..not sure if I am ready to take them off in case I sink.  I think the uncertainty is the hardets thing for us all to cope with and for me it is every time I experience a new symptom I wonder if this is a relapse and has my neuro got my dx right? I just think it takes time to adjust to everything and get used to the dx and how the body behaves.

Keep strong and I agree with all the comments from Alex, Jen and all the girls.

Love Sarah x

[rendean]

I think you've gotten really good advice. My advice would be similar to Jen's about the flare leading to your dx.

I would also consider a new neuro as there is no benign MS. My neuro told me to the only way to diagnose "benign MS" is when an autopsy is done, until then it is full blown MS with nothing benign about it.

The fatigue and leg pain are my 2 biggest complaints and we are still working on the right combo of meds one year  later. Hang in there. Getting the meds right and feeling better WILL come.

Ren

[marymoto]

thanks ladies for the advice and support i appreciate this.

[jensequitur]

I concur!  

Not to sound like a Pollyanna here, but really the first two years after diagnosis are the worst... at least from my personal experience.  You've had the flare that led to your diagnosis, and there's the neurological damage to heal up from, and then typically you'll get two or three flares that first year after diagnosis.  So it's a lot to deal with the first year, and it took me about three years before I started feeling like I could function again.

Mostly it's the fatigue that brings you down.  I can bear the other symptoms, but when I'm drained and fatigued, everything seems too much.

[RedFlame]

I agree that you should find a new neurologist.  The whole Benign MS doesn't make sense to me either.

[HVAC]

I am not sure how anyone gets tagged Benign MS. If it were me I would find a new Neurologist. Benign MS is an after the fact diagnosis i.e. you have tests which show MS but never really have symptoms. You may have a slow progressing MS like mine that sneaks up on you. In my case I have PPMS which has no treatment for the progression but I can treat the symptoms. I have never had attack but the symptoms increase a little at a time.

Alex

[coco31]

Hi mary,

I think in general the "crappy" symptoms you are feeling are a special present given to us when we get MS. How long they last is different for everyone, but it is normal. I think the longer you have a symptom which persists the more accostumed to it you become. I've had fasiculations (probably the most annoying symptom I have experienced). When it first came I hated it..... Now its an ocassional unwelcome visitor and I am more tolerable.....

Hopefully this will happen for you........ In time.

Sharon

[siv1]

Hi,
Sorry you are feeling like that. I am in same boat as you are(dx'ed in may) and I think some of those symptoms are going to stay with ya.

I will let others that are Dx'ed for awhile answer.