@BOK2Bjan 

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BOK2Bjan

SPMSers - share you're experiences.

Hi - my name is Jan. I would love to talk with others with SPMS. What has your experience been? How do you feel about the medications you've been on - do you feel they helped or hurt? What are you doing now, treatment wise? Most sites have a lot of newly diagnosed or limbolanders, whom I love to communicate with - to share the whole journey and perhaps even lend advice or just opinions about this common disease journey. But I do long to have a conversation with those going through similar challenges as myself. I only had a neurologist for the surprise diagnosis many years ago, and a post medication appointment. I couldn't tolerate the meds, and she said my case was too complicated for her to manage (due to comorbidities). There wasn't another neuro who accepted Medicaid, so I just continued to forget about it, and worked with my GP to manage my other very challenging diseases. After losing my long time internist who managed all my health conditions - I did finally get a neurologist 2 years ago - 15 years after my first symptoms of MS. She told me it was now SPMS. Now I have life altering symptoms, and MS is finally on top of my priority list! Walking is such a challenge, I am struggling with decisions about wheelchairs. I would love to hear how others are managing, and how staying independent has been navigated by others. Now that I live alone, things are becoming challenging. I'm training my now 8 mo puppy to be my service dog - a task not to be undertaken by the weak of heart!! Thanks in advance for sharing your journey! Blessings.
@Stumbler

@bok2bjan , I think it's just a fact of life that newly diagnosed and limbolanders need the most peer support, whereas those that have been dealing with the condition for longer are more content to manage things themselves. My journey had been one of intransigence, both on the side of my neuro support and myself. I was diagnosed back in 1997 but wasn't happy to accept the Betaferon regime offered. However, it was never really recommended that strongly to me. I eventually started it in 2005. I was declared Secondary Progressive in 2010. No tests, no scans, just a decision to call it progressive and stop the Betaferon. Now, if I'd been told to avoid stress at any stage, things may have been different for me. So far, I have acquired one stick, then a second one, then a wheelchair and now a stairlift. You'll know when is the right time to acquire these "accessories", it'll just be a comfortable thing for you to do. I'm fortunate that I'm still married. My wife is very good at picking up the slack in the things that I used to be able to do. Bless her.

@BOK2Bjan

Bless her indeed! I'm thankful that my kids are close by, but with busy lives....you know the drill. I will definitely know when a wheelchair is mandatory, but it's harder to know when it would help save limited energy stores for basic living, vs allow strength to wane due to its use. It's a very individual thing to be sure. I think that if my insurance would help with the costs, I could maybe make the decision with greater ease. Putting weight on my feet is becoming very difficult though! And yes, of course the reason for those groups being on these sites is quite obvious - which is why I asked for some conversation amongst us. It's always good to share with those with similar circumstances. I enjoy conversing with everyone, but I am facing new chsllenges, so thought I'd reach out. Interesting that neither one of us were given much of a push to use the DMDs early on. I didn't have a neurologist again until mine was SPMS, so the choice was taken from me. But looking back, I would make the same decision. We don't know whether we will have a disabling disease course early on, so accepting treatment which might prove harmful is a tough one. I did end up on IVIG for an immune system abnormality, and steroids and Methotrexate for Systemic Sclerosis though. I have no idea if they did anything for the MS - but have to say it didn't. So you took the Beta fern for 5 years? Did you do alright on it? And you didn't have an MRI in 2010? Wild. How many did you have throughout the years? Thanks for responding - I hope you're enjoying this day!