Will I have a chance to live my life again?

[Ant1981]

I know my posts are all over this board but I'm still struggling with this diagnose but now my anxiety shifts from the relapse to recovery.

After 9 week relapse, I think it stabilized as I'm on only 10mg steroids and will finish my taper tommorow. In the past months I would finish my taper and my symptoms just got worse after my solumedrol which really worked well each time (twice). The lesion grew a little bit now I think I'm in recovery. But will it get me back to close to normal? I wanna drive take yoga get my massage therapist and start excersize but my independence lost with poor walking/balance (improving daily by a little amount) I'm eager to get my independence back and live my life again.

I have time to recover but this first relapse that diagnosed me was a real nasty experience, I'm hopeful for the recovery as I've come a long way in the two short weeks already. I feel that this could take all winter. I'm dealing with just 1 brainstem lesion right now and what to end this nightmare.

Im worried about my prognosis as I'm 36/37 and hope my tecfidera which gives me 0 side effects (half dose for now) stops relapses in their tracks. Do DMD affect flare severity?

I'm just missing life and wonder if I can ever have some normal back.

Any stories of your first diagnosis flare? How did it go mine was pretty severe, numb/spastic right arm and leg, walking trouble, paralyzed ankle and toes (let up got full range of motion back), numb (dental freeze) left face lips, half tongue cheek forehead, fine motor skills can't write well, fingers some numbness. But cross fingers now couldn't do that before. I do PT which helps, I'm making small gains but I think a complete recovery is not gonna happen but maybe, I sure hope so.

thanks I look here for support

[SNOOPY]

Hi Ant1981,

From reading your post I think you believe that taking steroids will fix your symptoms and get you back to normal.

Steroids will not change the outcome of the disease.

Steroids reduce inflammation (active lesions) which might reduce symptoms or even possibly completely resolve them. There is no guarantee steroids will help.

My suggestions:

(1) See a Dr. about treating your anxiety (preferably a Psychiatrist but a Primary Care Physician or even your Neurologist would be able to prescribe medication). A Psychotherapist would also be helpful to help you work through your fear and anxiety about this new diagnosis.

(2) Continue your Physical Therapy. You are seeing improvements even if they are small. Be sure to continue your PT exercises at home. Physical Therapy is exercise.

(3) Seriously consider getting a wheelchair while you are working to recover. This will offer you more independence.

(4) Stop thinking of steroids as a wonder drug that will make everything go back to normal...it won't.

(5) Have patience. Recovery can take time. Sometimes full recovery never happens, only time will tell.

My first exacerbation (relapse, attack, flare-up), which gave me my diagnosis, was not fun and I was scared to death.

I was 23 or 24 years old. I lost the majority of my mobility(couldn't hardly walk), numb from the waist down including the girlie parts, hand tremors, vibration/buzzing/pins and needles from the waist down, extreme fatigue, Lhermittes sign.

This exacerbation was with me during the entire diagnostic process which was 3 months. Started oral steroids after diagnosis and the exacerbation lasted another 6 weeks. My recovery, which mainly consisted of trying to walk again, took a year. At about that year mark I had my second exacerbation which was worse than the previous one and took another year to recover my mobility.

This disease has always effected my spinal cord which has made mobility my biggest struggle. For this reason I am an advocate for exercise...anything to try and retain whatever mobility you can.

[KoKo]

(1) See a Dr. about treating your anxiety (preferably a Psychiatrist but a Primary Care Physician or even your Neurologist would be able to prescribe medication). A Psychotherapist would also be helpful to help you work through your fear and anxiety about this new diagnosis.

(2) Continue your Physical Therapy. You are seeing improvements even if they are small. Be sure to continue your PT exercises at home. Physical Therapy is exercise.

(3) Seriously consider getting a wheelchair while you are working to recover. This will offer you more independence.

(4) Stop thinking of steroids as a wonder drug that will make everything go back to normal...it won't.

(5) Have patience. Recovery can take time. Sometimes full recovery never happens, only time will tell.

Hi Anthony

These are excellent suggestions from SNOOPY, who has gone through a very similar experience more than once.

Although I don't experience relapses (progression only), I totally agree with keeping as mobile as possible and exercising within our abilities, even if it seems minimal.

Also, stress and anxiety reduction is imperative. I went the psychotherapy route (cognitive therapy), and it helped immensely, and no meds were needed (however, meds may be necessary for some).

Take Care

[Ant1981]

That's incredible

Hi Ant1981,

From reading your post I think you believe that taking steroids will fix your symptoms and get you back to normal.

Steroids will not change the outcome of the disease.

Steroids reduce inflammation (active lesions) which might reduce symptoms or even possibly completely resolve them. There is no guarantee steroids will help.

My suggestions:

(1) See a Dr. about treating your anxiety (preferably a Psychiatrist but a Primary Care Physician or even your Neurologist would be able to prescribe medication). A Psychotherapist would also be helpful to help you work through your fear and anxiety about this new diagnosis.

(2) Continue your Physical Therapy. You are seeing improvements even if they are small. Be sure to continue your PT exercises at home. Physical Therapy is exercise.

(3) Seriously consider getting a wheelchair while you are working to recover. This will offer you more independence.

(4) Stop thinking of steroids as a wonder drug that will make everything go back to normal...it won't.

(5) Have patience. Recovery can take time. Sometimes full recovery never happens, only time will tell.

My first exacerbation (relapse, attack, flare-up), which gave me my diagnosis, was not fun and I was scared to death.

I was 23 or 24 years old. I lost the majority of my mobility(couldn't hardly walk), numb from the waist down including the girlie parts, hand tremors, vibration/buzzing/pins and needles from the waist down, extreme fatigue, Lhermittes sign.

This exacerbation was with me during the entire diagnostic process which was 3 months. Started oral steroids after diagnosis and the exacerbation lasted another 6 weeks. My recovery, which mainly consisted of trying to walk again, took a year. At about that year mark I had my second exacerbation which was worse than the previous one and took another year to recover my mobility.

This disease has always effected my spinal cord which has made mobility my biggest struggle. For this reason I am an advocate for exercise...anything to try and retain whatever mobility you can.

Wow, thanks for sharing your experience. At the age of 22-23 I couldn't imagine that happening, my flare lasted 8-9 weeks like I said but I'm already walking, funny thing when I'm out of the house or in public I don't walk the same as in my house, prob self conscious of falling. I'm seeing improvements every day and from week to week it's noticeable moreso. It will take time, yes but a few months I'm sure I'll recover most of my walking abilities through more PT and hard work. As for independence I'm looking to get back to driving by my bday (Jan 31) and back to work as an estimator and customer service role (was construction labor intesive) maybe do light labour as well but keep stress low. I'm hoping that my recovery continues into other symptoms like fine motor skills could use a partial recovery as writing is very sloppy it's like chicken scratch lol but the annoying numbness and spasticity would let off a bit especially on my face I'd be ok.

Your signature says you never use a DMT, why is that snoopy? I'm trying tecfidera to see if it can stabilize this disease then I'll be ok for the most part.

I have a lot of life left to live and have a lot of fight still in me.

hope your doing well.

[SNOOPY]

Your signature says you never use a DMT, why is that snoopy?

I was diagnosed in 1984 or 1985. There were no Disease Modifying Therapies at that time. The first DMT (Betaseron) became available to the general MS population in 1994...by lottery. As my Lottery number was coming up I had a discussion with my Neurologist and we both decided it would be best for me to take a wait as Betaseron was the first of it's kind. I was not the only one making this decision at that time.

Through the years I have simply made the decision not to use DMTs. I don't believe they work as well as we are told, but that is only my opinion and you know what they say about opinions I felt and still do that this was the best decision for me. I do not suggest or recommend the use or non-use of DMTs. I do strongly recommend exercise

Glad to hear you're improving

[Ant1981]

Steroids

Wow, thanks for sharing your experience. At the age of 22-23 I couldn't imagine that happening, my flare lasted 8-9 weeks like I said but I'm already walking, funny thing when I'm out of the house or in public I don't walk the same as in my house, prob self conscious of falling. I'm seeing improvements every day and from week to week it's noticeable moreso. It will take time, yes but a few months I'm sure I'll recover most of my walking abilities through more PT and hard work. As for independence I'm looking to get back to driving by my bday (Jan 31) and back to work as an estimator and customer service role (was construction labor intesive) maybe do light labour as well but keep stress low. I'm hoping that my recovery continues into other symptoms like fine motor skills could use a partial recovery as writing is very sloppy it's like chicken scratch lol but the annoying numbness and spasticity would let off a bit especially on my face I'd be ok.

Your signature says you never use a DMT, why is that snoopy? I'm trying tecfidera to see if it can stabilize this disease then I'll be ok for the most part.

I have a lot of life left to live and have a lot of fight still in me.

hope your doing well.

Steroids helped calm flare symptoms nicely but I'm actually off them today (thank goodness), well the taper is done now and symptoms should remain stable. Then this flare is confirmed had reached its peak, and recovery can resume.

[Temagami]

Your anxiety is palpable. Learning breathwork techniques helped me immensely. Google Herbert Benson and the relaxation response (which can be initiated in 10 seconds). You can do it anywhere, anytime and no one need know that you are doing it. You would also benefit from learning the constructive rest pose and doing that for 10 minutes a day. Every anxious thought releases chemical messengers that mess with how you literally feel- increased heart rate, rapid shallow breathing, sweating etc. The breath is the most powerful and immediate way to calm oneself. Please give it a try.

[nikki41]

"I'm just missing life and wondering if I can ever have some normal back."

I know how you feel! (I don't have MS, I have a different crummy autoimmune disease) but I understand the struggle. When my disease flared it ripped me of my mobility and I felt like a hollow shell of my old self. The worst was that I let it get to my mind. I let it get me down, and I let myself become depressed. That was when I decided the disease was NOT going to win this time, not ever. It could rob me of my mobility and body, but not my mind. My mind is MINE. Keep your head up and smile through the bad days. Don't ever let it win. I know it's hard. For me, when the pain hits, it's so difficult to keep it from getting to my head. It's like being thrown in the ocean with cinder blocks tied to your ankles and you are struggling to keep your head above water. It's hard to not drown. You can live life however you want. Don't let it stop you. Don't let anything stop you.

Have you considered a service dog? They can bring back a great amount of mobility and freedom. They make it so you don't have to depend on others for things. It's just you and your dog! They can help you with balance/mobility support, along with a multitude of other things. I am a HUGE believer in the benefit of service dogs for people who need them (as you may notice I've talked about service dogs in many other posts!) This is something you should think about and consider! They are life changing!

[Thinkimjob]

It's never going to be the same. That doesn't mean your life is over. Just different. No one can tell how it's going to go - better drugs these days should equal a longer time of reasonable "health".

I've had it for 20 years. Yes, it sucks. I worked for 18 years post diagnosis; my boyfriend, bless him, has stayed true; it's hard, but it is what is. Could be worse, could of course be better.

It is terrifying when you are first diagnosed. The fear will pass, eventually. Ironically enough, for me, the early years when I still felt okay, were much worse than these last few where I'm no good at all.
Try not to waste your "good" years. All the best.

[hobbit]

I was arrogant

24 yrs ago when I was first diagnosed, I was arrogant. I couldn't be disabled, I didn't have time for this nonsense I had children to raise. I went to an MS meeting and saw everyone in wheelchairs and turned around and walked out. I continued to lift weights and work and be the football mom and the girl scout leader. I was naive and happy to stay so.

I was wrong. MS is humbling and steals the normal by chunks at a time. "Normal" is fluid, it changes by the day sometimes by the minute so every moment becomes the new normal. Once you can accept that you can move forward instead of looking back.

Peace,
Anna

[Ant1981]

New normal

24 yrs ago when I was first diagnosed, I was arrogant. I couldn't be disabled, I didn't have time for this nonsense I had children to raise. I went to an MS meeting and saw everyone in wheelchairs and turned around and walked out. I continued to lift weights and work and be the football mom and the girl scout leader. I was naive and happy to stay so.

I was wrong. MS is humbling and steals the normal by chunks at a time. "Normal" is fluid, it changes by the day sometimes by the minute so every moment becomes the new normal. Once you can accept that you can move forward instead of looking back.

Peace,
Anna

as long as I can live a life without severe disability I'll be grateful but being in a wheelchair around my age (36) is damn scary. I was in one during a few moments in hospital stay from first flare up upon diagnosis then got out of wheelchair to a walker than now I'm walking 80% and improving weekly and feeling good as my recovery is moving along. I'm sure if this keeps going and my medication works I'll live a pretty good life for many years to come I'm hoping. I'm just anxious and scared sometimes about my future.