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Im Freaked Out

lease forgive my yawp - I'm scared and have no one to chat with who understands what I'm going through.

I'm male and in my late 50s. I've been complaining to my GP about cognitive impairment for the last few years, along with some urinary issues (urgency, lack of flow), balance issues, and heart issues. I was referred to a urologist (prostate fine, PSA fine) who suggested Flomax. The cardiologist I attended found a bad valve that needed repair. My heart surgery was scheduled for early this year - a valve repair and cardiac ablation - both were successful. Prior to that my GP suggested I have a brain MRI - she was concerned there may have been vascular damage related to the heart issues.

Suffice to say, when the MRI came back, my brain was full of lesions. MS was diagnosed and a subsequent visit with a neuro suggested PPMS, although I'm still waiting for a follow up brain and spine MRI to confirm the PP part.

What's freaking me out is this: my cognitive decline is becoming more apparent and is seemingly accelerating. I can live with the bonking off walls, the incontinence, the chronic fatigue, and the muscle pain. What I can't live with is my mind slipping away. My job requires a significant amount of mental acuity, but more importantly, my intellect is a significant part of my identity, and I sense it slipping away. I would previously read 3 books a week, now I can barely finish one in a month. I can't complete Sudoku puzzles any more. Mental tasks that were once trivial are now momentous. My sense of humor has left me and I find it difficult to follow conversations.

I remain positive, hoping that the noted exacerbation of symptoms is simply a function of recovering from heart surgery. That said, I'm 7 weeks post op and I feel less sharp than I did two weeks post op. The thought that PPMS is a one way march into decline makes me fear that my cognition won't bounce back.

Please forgive the gloomy post. As I indicated, I don't have anyone else I can share this with that understands my fear. I would be very grateful if someone with PPMS can share some encouraging words.

  1. Hi , I'm very sorry to hear about what you've been going through. While I've had many symptoms, my cognitive issues were the ones that, to me, are the worst (https://multiplesclerosis.net/living-with-ms/my-cognitive-changes-because-of-multiple-sclerosis). Like you, it was a big part of my identity and my career. It's extremely scary to have our cognition affected. I try to remember that I haven't really lost it for good, I'm just having problems accessing that area of my brain. That doesn't help with day-to-day issues though. It sounds like your doing what you need to do, seeing doctors and working on a diagnosis. Once diagnosed they can start treatment, not only to help with the disease progression but to help working on your cognitive issues too (sometimes a medication like adderall can help, as can cognitive therapy). I'd say try no to worry but I know that's impractical. Know that you aren't alone, many of us here have dealt with these same issues. And always feel free to have a gloomy post (or a sad post or whatever), we are here for you.

    1. Hello there. I understand what you are going through. I too was diagnosed with PPMS @ 60 yrs of age. I’m a nurse by profession and was on a consulting assignment and my cognition was affected. I couldn’t finish presentations or teach anymore. I tried to keep pushing through but had to slow it down. The upside is I retired early and realized without all the pressure of my job and stressors most of my cognition returned. I do puzzles like you and can read a journal or two. As Devin stated there are websites explaining cognition and MS and cognitive therapy. Sometimes my short term memory little fuzzy but it comes back. Don’t freak out it will add more stressors to your life. We are in this together and we can get through this together. When I started medication I could tell the difference in my progression. Mine slowed down. Stay calm as much as you can and feel free to vent at any time. We are on this journey together.

      1. - Your 2017 post resonated with me, right down to our early career choices. I remember reassuring novice developers in my early days that they didn't have to remember how to do everything, they just had to remember where to find how to do everything. I knew that when I started losing my ability to index information I was in trouble.

        One of the points you made gave voice to a significant frustration of mine: I don't know when my brain is malfunctioning. So much so that I've lost confidence in my own judgement. I'm at the point where I think I have a professional obligation to reveal my challenges to my partners, yet I'm unsure if that is the correct course of action. I know I'm not thinking right, but am I overstating the impact of this to myself? If I was thinking right, would I come up with a different risk analysis? It's terribly confusing when you feel like you can't trust yourself.

        - Yeah, presentations are the worst. A couple of years ago I noticed that I needed to rehearse presentations, otherwise I'd find myself completely lost 20 minutes in. Rehearsal helped, but I was no longer able to be spontaneous and my stuff became less engaging. When you couple that with my substandard performance during Q&A I eventually just started pulling away from presentations all together.

        I'll do some google searching for MS and cognitive therapy. I've been taking modafinil for 2 or 3 years now. In retrospect it's amazing how many symptoms that fall under the constellation of MS (insomnia, day time somnolence, etc.) I've had discrete treatment for. Perhaps, as Devin suggested, Adderall may be more effective.

        Thank you both for your responses. It is comforting knowing that others have blazed the same trail I appear to be heading down, although I'm terribly sorry that you both have had to. Take care of yourselves. I expect I'll see you both around the forum.

        1. I used to be able to do mental math, read technical manuals and understand. Not articulate today but my fog is hard to accept as i used to be able to get things. Since 1990 my decline has been slow, but it scares me as what will my future be

          1. It can be awfully scary when the future is so unpredictable, . Have you tried any cognitive exercises? If so, do you think they help at all? I hope you find some comfort and some good advice in the other comments here. Try to remember that MS cognitive issues are different from dementia. The information and the skills are there. You just can't always access them, especially not on demand. Thinking of you and wishing you the best. - Lori (Team Member)

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