My future

[Ant1981]

I have not controlled my anxiety at time and my mind creeps into some dark places, I can't help it.

being 36y/o male and a pretty bad flare affecting my motor nerves like walking and gait, facial and leg/arm weakness, right hand numbness and fine motor skills, some bladder hesitance and balance issues. Now my walk has drastically improved and balance shows signs of coming along (can stand alone on affected right leg for longer and longer each week) my left leg I can stand indefinitely on. My sensory numbness has no change but my writing has improved a little now.

Im recovering from a 9 week flare (diagnosis exacerbation) had ms for up to 5 years ago with dizziness spells, incoordination sensations and bladder hesitation, although short lived and completely recovered.

Now im still recovering from my major diagnosis flare in sep./oct. hoping I keep getting better and better as I see small improvement almost daily, albeit minuscule I am doing things I couldn't just weeks ago (stairs with no handrails, getting outta bed with abdominal muscle, eating with right hand, showering, walking with no aid etc...)

I feel as tho I'm regaining pieces of normal life back but have a ways to go still (maybe all winter) to recover from my flare caused by 1 brainstem lesion that was inflamed for 9 weeks causing multiple symptoms including fatigue.

im seeing a psychiatrist for my anxiety but I can't shake these feelings of:
do I have an aggressive course of MS? A wheelchair future does not sit well with me and am I destined for a life of disability? What's my prognosis look like at 36 and being male? I'm taking tecfidera but will push tysabri at my next neuro meeting as I don't want any more damage. Seems my recovery is moving along but needs more time. I get worried for my future and hope my MS will stabalize at some point soon.

any advice will be greatly appreciated especially with males who were diagnosed around my age, I hear of ppl that can lead normal lives and have an easy course of the disease and hope mine isn't so hard, I have so many "what if" scenarios in my head it's driving myself crazy, I have yet to adjust to this disease yet.

thx

[SNOOPY]

Hi Ant,

I'm glad you are seeing a Psychiatrist. A Psychotherapist would also be a good idea. A Psychotherapist does Cognitive Behavioral Therapy(CBT) which can help you learn new and better coping skills and how to change your thought process. You can also learn how to stop negative thoughts and interrupt the process to anxiety.

I have not controlled my anxiety at time and my mind creeps into some dark places, I can't help it.

Your negative fearful thoughts are controlling you and feeding the anxiety, CBT would help.

None of us have a crystal ball into the future, so there is no way to predict what the future holds. This is true for every living person. You could be hit by a bus tomorrow...just sayin'

It would help if you could find things to do that distracts your fearful thoughts. Maybe make a list of the positive things in your life (friends, family, your current abilities, hobbies, things you enjoy, etc.). Mindful meditation is helpful. Spirituality is another.

I understand your fear of this disease and although you are not old at the age of 36 there are children diagnosed with this disease and the reason there are Pediatric MS Centers. My heart goes out to those children who start out their lives with this disease.

I have had spinal cord involvement from the beginning so my disease course hasn't necessarily been easy but I have led a fairly "normal" life with this disease. I was diagnosed with this disease 3 or 4 years after I got married. When learning about my diagnosis I gave my husband the option of divorcing me without any hard feelings. He became angry and said he had no intention of leaving me. We have been married for 36 years and have 2 children, ages 25 and 27. My Son has participated in a MS Walk.

There really is more to life...even with MS.

[bmarvinr]

Anthony,
I understand the concerns you are expressing. Here's some of my story. Twenty-three years ago I was a 47 year old man with a new diagnosis of Multiple Sclerosis. At that time, age and gender I was given a 60% chance of a walker or wheel chair within 5 years. That was not a welcome prediction but it was way better than the anxiety of the six months leading up to the diagnosis. Two years latter along came Betaseron which I self-injected for about twenty years until March of 2017 when I changed to Techfidera.

Here's my point. Twenty-three years ago I was having all the anxieties and concerns you are experiencing now. But here I am at age 70, never used a walker or a wheel chair or crutches and I still drive a twenty mile commute to work every day. My future was unknown before the diagnosis and that is still the case. Your recent past appears to be a series of continuing small improvements. Dwell on those improvements and the fact that you have made the smart choices of getting on a good medication, exercising and eating well. It is possible that your first relapse will be the only relapse for a long time and that your recovery will be nearly complete. Neither of those outcomes is certain, nor are they impossible. Nor is anything else in our future certain. Enjoy every improvement as it happens. A good and enjoyable life is still very possible.
You hang in there, Anthony
Marvin

[Jules A]

Marvin, thank you for sharing your experience. I hope you have many more good years ahead.

[pennstater]

I think the posts shared today give great insights. I had to smile at Snoopy's bus line - my first neuro said that to me in the first year of my diagnosis when I was struggling!

My first neuro also told me that it takes 12 months on average to start to come to terms with the diagnosis and 24 months to fully accept it. For me, he was right on. Lots of emotional ups and downs the first year, alot better at 18 months, and at 24 months, just became part of life and didn't dominate my thoughts and actions.

I think bmarvin's inspirational story also highlights an important concept. You can read/hear all you want about odds , but that doesn't mean that becomes your truth. People beat odds all the time, in every way. The other thing is that I don't think alot of stats have been updated in a while. So I don't think they reflect the success some people have had on treatment.

Hang in there.

[Thinkimjob]

Don't expect either the best or the worst. No one knows what's going to happen.
You're on a strong drug; you're improving (I'll never say 'getting better').

[Mamabug]

I try to look for the silver linings behind the clouds; the blessings that accompany the losses. It doesn't help me to ignore the hard stuff and to pretend that life is always hunky-dory. Because, sometimes -- it's not.

But, I like Snoopy's suggestion to make a list of the positive things in your life. Be grateful for friends, family, your current abilities, hobbies, etc.

Also -- What was the most fun thing you did last month. What moment made you smile yesterday? What pre-MS memories do you have that you treasure? What valuable lessons have you learned from MS that you would not have learned without it?

MS can change your future, but it doesn't have to make all of life negative and it can't take away your memories.

[DorOMA]

Good advice Mamabug and Snoopy. I have a written list of five things that mean the most to me, and I keep it in my pocket . When times are really bad, I look at that list and that seems to get me back on track.

[Temagami]

Please check out the website for overcomingmultiplesclerosis by Dr. George Jelinek- he emphasizes diet, meditation and exercise in addition to the DMTs.

Any time I got myself worked up over the dx and fell into the woe is me pit of fear, I made a crocheted crown for a kid undergoing cancer. Spending energy to help someone else is likely to raise your spirits. What hobby, interest or skill do you have that you could use to help someone else? I cannot over emphasize how quickly this takes your mind off of your own woes and makes you feel better.

Since you seem to be a person who checks out the worst case scenario, you seem likely to look into lifestyle suggestions. Eating well- real foods and minimal added sugars will go a long way to helping you decrease inflammation. Read up on the microbiome and the gut-brain axis.