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My Story, Fear of Drugs, Loosing Hope


I would like to tell my story and ask some questions, I've reached a point of hopelessness and honestly don't know where to turn, or how to rise above

I'm a 63 year old male, received my diagnosis when I turned 40, was told roughly 8 years ago I have a progressive form of MS

When I was first diagnosed, I was sent to an MS clinic for a second opinion, both my neurologist and the head of the MS clinic were great doctors and took the time to answer my questions

We talked about disease modifying drugs at the clinic and the doctor said these drugs will not fix existing damage, and if they do work, will give me at most 30% protection against future damage, and come with a potential host of side effects

He said given my otherwise good health at that time, if it were him, he would focus on diet and stress reduction, and avoid extreme temperatures

I am not one for medication so it was a relief to hear this, and to this day have not used any disease modifying drugs but cannot wonder if that was the best decision

Over the years, I have had to change neurologists a few times due to location and most of them are pro drugs but I still cannot get myself to do it, I think back to the MS clinic and ask myself, are the side effects worth a "possible" 30% benefit

I would say for the first 15 years, I was able to do most things despite the pain in my body but in the last 8 years or so, there has been a more obvious decline

In the early days, I was diligent about imaging, went for regular MRIs, etc. but as time past, I started to resent these tests, hearing that I had new lesions was becoming too hard to hear, especially because there are no viable solutions, at least that I've been made aware, so I stopped doing them

Today, my symptoms look like this

a) neuropathic pain (usually intense) from mid torso down to toes
b) urinary urgency, sometimes incontinence
c) bowel urgency, periodic accidents
d) mobility problems, require cane or walker, cannot walk more than 200 feet, sometimes 100 feet
e) eye floaters
f) fatigue, sometimes overwhelming
g) swallowing difficulty, intermittent
h) depression and anxiety, sometimes debilitating
i) weakness, especially in legs, one worse than the other

Recently, I had an episode of temporary paralysis (in one leg) that put me in the hospital for 4 days with the conclusion that it was an infection, and it attacked the weakest part of my body, my right leg (this episode has brought a lot of things to the surface and got me worried about the future)

As far as drugs go

a) antidepressants, on and off, as needed
b) ativan (lorazepam), for anxiety but also helps with pain
c) tylenol and advil for pain, effectiveness varies

I have tried different, relatively safe drugs over the years for pain, and sometimes they help but often they loose their effectiveness, plus I really don't like taking too much of anything

I would really appreciate anyone that could answer any of these questions

1. My family doctor has prescribed Lyrica for neuropathic pain, a low dose, and I filled the prescription but I am nervous about starting it because of the enormous amount of possible side effects, has anyone had experience with this medication? Did it help? Did you experience any dangerous side effects?

2. Has anyone else opted against disease modifying drugs, and do you feel you made the right decision?

3. I have become isolated in my home, afraid to leave because of the bathroom problems, is anyone else experiencing this?

4. I am reading a book, it's about people given medical death sentences, no hope for recovery and not long to live, who have decided as one last hope of survival they will drastically change their diet, take drastic measures to eliminate stress, and go to healing centres in Brazil, has anyone considered something like this? Has anyone actually done this?

5. On the opposite side, does anyone feel so hopeless and beaten down that you want to talk to your doctor about assisted suicide?

6. Are there any drugs or treatments that you feel are relatively safe that would give people like us a little bit of their life back?

  1. I'm in my late 40s and was diagnosed in my late 20s. I am experiencing many the same symptoms you are. MS is the worst but I know there are people suffering in this world worse then I am. That doesn't mean what we are experiencing is less important, it just means that there are some that are worse off than us.

    YOU MADE THE RIGHT CHOICE. Because it was your choice for you. You know yourself and your body. Not your doctor. Not your neuro. You.

    I am reading your story and I feel your pain. All of it. You are not alone. Many people with MS have been through or are going through what you're experiencing. I am not a Dr. but I joke with people that I, "play one on TV".

    In all seriousness, the questions you're asking, the morality of it, and what you are feeling is legitimate. What can we take to make us better? What can I do to feel better? What can I do to get a little bit of my life back? (at least get back what we've lost in some small way)

    I wear pads for incontinence; many times adult briefs. There is no shame in that! It's better then leaving a puddle or changing your clothes multiple times a day.

    I look at it this way- What haven't I lost. How can I take control of something (MS) that I've no control of? My life. My decisions. Not to mention my dignity. Asking for help is a step forward in the right direction.

    The big picture- talk with your doctor. Call him today. Leave a message with anyone. Call family. Let them know how you feel.

    In the interim- Be honest about how you are really feeling and meds that are available. Many of the medications that are available WILL HELP you - which is a good thing! Especially when you are trying to cope with everyday life. I don't know what I would do with out meds for depression/anxiety, pain, numbness, etc. These meds allow me to "function" in the everyday world.

    1. ,
      Thank you for sharing your story.
      I'm saddened to hear how difficult it has been for you.
      As mentioned, although you may feel isolated, you are not alone. So many in this community can relate to what you are going through. (Hopefully, more will chime in here.)
      When it comes to treatment and MS, there is certainly no "one size fits all."
      I wanted to share a few articles that may provide some helpful information:,,
      An important thing to remember is we can't look back and question can literally do a number on anyone. Looking forward is the direction we are going. What can we do from this moment forward?
      Please know this community is here for help and support, reach out anytime.
      Warmly, Doreen (Team Member)

    2. ,
      Thank you for sharing your experience and kind words of support.
      We appreciate you being a part of this community.
      ~Doreen (Team Member)

  2. Thank you for caring and for the resources, opening up to people who can relate is comforting, but it's hard not to think back to my other life when I could walk, drive, go for an ice cream, chat with the neighbours, or to think what it would feel like to wake up one morning my old self, I wish and wish and wish but it never happens, maybe one day, wishing the same for all of you

    1. ,
      It surely is a struggle, mourning your life before MS and adjusting to life now.
      It is discussed quite often in this community.
      I want to share two additional articles that may resonate with you: and
      Here's hoping for better days ahead.
      I will be keeping you in my thoughts, reach out anytime.
      ~Doreen (Team Member)

  3. Thank you

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