Intro

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RobinHood70
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Intro

Post by RobinHood70 »

Hi everyone! I'm undiagnosed as yet, but strongly suspicious that I have MS that's been masked by pre-existing ME/CFS. I'm currently almost completely bedridden from the combination of the two, and have been for 1.5 years now. I've had issues with my doctor, since I can't get out to see him for an in-person examination, but once I began to suspect MS, I managed to convince him to give me a trial prescription of Baclofen. While it's been far from curative, there have been some fairly noticeable benefits, so I think we've at least narrowed the possibilities of what this might be significantly.
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Scott1
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Re: Intro

Post by Scott1 »

Hi,
It's an unusual way of justifying Baclofen. I can't think of a doctor I have met who would operate on the basis yours has without seeing you. It might be right but its like checking your balance by asking you to walk around the ledge on top of a tall building.
Normally, a neurologist, skilled in MS, would make the diagnosis after both an examination and a MRI. What a neurologist would be doing is checking that your symptoms are not caused by something else.
Baclofen will help ease tightness in your muscles. It might, as a secondary effect, act as a sleep aid but that is dose dependent. That's all it does but you may think more is going on because of those outcomes.
I hope when you say 'doctor' that you mean a neurologist. Are you dealing with a neurologist?
Regards,
RobinHood70
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Re: Intro

Post by RobinHood70 »

Since starting the Baclofen, there have been numerous improvements in terms of muscles no longer seizing, spasming, or twitching, along with a few bladder problems that appeared to be muscle-related though it hadn't been entirely certain. Given that they've also improved in the past weeks, it seems almost certain that they were. The Baclofen hasn't done anything besides that, nor would I have expected it to, but the change over the past few weeks from that alone has been astounding. I can now spend my days with little or no pain unless I stand for several minutes at a time. That's a 180 from previously, when my hips were in pain for hours at a time. Even when that pain faded, it returned within moments of standing. I dreaded even the simplest trip to the bathroom, and showers were nightmarish. This is the level of disability my doctor has been trying to cope with. Hopefully, now that I can actually stand for a few minutes without pain, this will mean that I can begin to improve muscle function and actually get out to see him.

And on that topic, getting out to see a doctor would first require that I be able to get there, since we have no home visit services of any kind in Ontario. (I think there was a trial one in Toronto, but I don't know what happened with it and I don't live there in any event.) Since I haven't been able to take a flight of stairs in the last 1.5 years, and at my worst, I'm almost completely bed-ridden, I haven't been able to go anywhere at all. Despite Canada having universal health care, the cost of the actual trips to and from the doctor aren't covered, even in circumstances like mine. Since I can neither sit nor stand for long enough to take a car or bus, I'm left with bed-to-bed medical transport at a cost of roughly $175 each way. Now, take that $350 per visit and consider that there will be a GP appointment, most likely some testing (possibly in multiple locations on multiple days), then a neurologist, probably more testing, and so forth. It adds up stupendously quickly. I'm on disability, which is below the poverty line in Canada, so even a single trip would be a massive drain on my budget. Multiple trips are out of my reach. In Ontario, you cannot contact a specialist directly; you have to get a referral from your GP first, so skipping steps is also not an option. This is why outside-of-the-box thinking has been necessary.

The one concern I have is that my condition has improved to roughly this same level in the past (albeit much more slowly), and then worsened again, a few times now. The timing of starting Baclofen and how rapidly things improved is difficult to ignore, but it remains to be seen what will happen over the next few months.
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Scott1
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Re: Intro

Post by Scott1 »

Hi,

I understand what a difficult situation you are in. Unfortunately, it leaves your diagnosis as a best guess. Perhaps someone with an understanding of the Canadian system can step in here.
The Baclofen will help with muscle tightness and whatever flows from that. It is only one tool in a range.
What you have described in the real hidden issue for many chronic diseases.
Regards,
RobinHood70
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Joined: Sun Jun 20, 2021 4:25 pm

Re: Intro

Post by RobinHood70 »

Yeah, I realize that if this actually is MS, there will be a lot more to it both in terms of symptoms and potential treatments. And there certainly are more potential symptoms, but apart from the muscle tightness and an odd visual field problem, most of them could be either MS or ME/CFS, which is why there's a lot of confusion. Thanks for the reply!
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