Last reply 6 years ago
Help?

This last year I experienced my first MAJOR flare up. But by the time I got to the neurologist (many months later) I was nearly myself again. The blood test and MRI were clean and she literally dismissed me to my GP. Anyone else with a similar experience when trying to get diagnosed??

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Gav
6 years ago

Hi Chels,

I’m sorry to hear that you’re having such a hard time of it at the moment, MS can be a real bugger to diagnose, and can take many years.

Now please don’t take this as me being dismissive of you, but what exactly is it that makes you so certain that it must be MS? If the tests that your neurologist ordered came back all clear, then he simply must deduce that you do not have MS. It would be negligent for him to say that you do have MS until he has ruled everything else out first (having spoken to many health professionals they’ve all told me that MS is at the bottom of the list as so many other conditions can mimic the symptoms of MS). I’m afraid as frustrating as it may be, you will just have to wait until any future symptoms may pop up.

But for now, as you’ve said, things are mostly back to normal, so just get out there and live your life. If you spend all your time worrying about the hypothetical scenarios, you may end up missing the wonderful things that life throws up, like hugs 🙂

Gav


Anonymous
6 years ago

hugs are good! And I completely understand the need to ask. I’m back to as normal as I can get. I’m dealing with severe muscle pain, spasms and weakness, chronic headaches, and a lame leg on a daily basis. Its a bit hard not focus on it and even harder to just live my life normally. Although I’m definitely not letting it rule my life. Still out there hiking when I can and trying to work out and other such things.

As for why I think MS…
There is no certainty of course. And I’m not specifically claiming that it IS MS and I’d be happy to find out it was something else less serious. It just seems the likely cause atm.

Over the past 10 years I’ve had 2 flare ups and multiple other incidents or periods of issues that have landed me in either the ER or a doctors office or both. They seem to have been getting worse each time I have one. This last one leaving me with a handful of chronic issues that wont go away. My symptoms are muscle weakness in my limbs (especially my left side), numbness, severe muscle spasticity and pain, cognitive issues, headaches, coordination issues, dexterity problems in my hands, burning and tingling sensations on the skin, the feeling of my chest being crushed or squeezed…the list could go on.

My grandmother had MS and sadly died of it before I was born and the fact that I live in the North West US (in a state that has a high volume of MS cases) only seem to make the possibility higher.

All the tests for other illnesses, such as Lyme Disease, that cause these symptoms were all negative as well. And there is a small percentage of MS patients that don’t show lesions of their 1st MRI.

What was the most frustrating for me was that I’m having a BUNCH of symptoms…something (anything) is wrong…but the tests stopped there. I was just dismissed with a “No MS, go back to your GP”. Even though protocol is supposed to be that if one test is negative you do another to confirm.

But also I was on the tail end of my flare up when I FINALLY got into the Neurologist. Which means she saw me when I wasn’t experiencing as many problems. Which means she wasn’t seeing me at my worst. Just frustrating. And nothing else is being done. My insurance basically pulled the plug on the issue because the 2 tests I had done were negative and I’m not bleeding out the eyes or whatever…so its not an issue. Which means I wont be finding out what is going on until I have another severe issue and end up in the ER…again.

Sorry for the rant!! =/


Anonymous
6 years ago

Forgot to add…I’ve also had other specialists and doctors who’ve I’ve talked to about this (seeing them for other issues) find it ridiculous how my Neurologist handle this issue…and have confirmed that some of my symptoms aren’t causes by something else. Like my ENT confirmed that my vertigo/balance issues isn’t an inner ear problem.


loulou
6 years ago

hello Cheis
I am sure I am talking on behalf of everyone on here, I may be wrong, I am very sorry about your Grandmother but it is very upsetting and worrying for all us MS’ers to hear that someone’s death was the cause of MS this is such a sensitive issue and sends me and I am sure others if we are honest into a state of worry, I know it does me! things have advanced, treatments drugs and care, can we be a little more sensitive to any new people joining that may be looking at “shift ” for a bit of comfort, on another note I really hope you do find your definite diagnosis, it must be so frustrating and a worry for you, I was told out of the blue, thought I had a trapped nerve! x


Anonymous
6 years ago

Lou-lou,

Definitely didn’t meant to cause any problems or to be insensitive. That wasn’t my intent at all and I am very sorry if this is the case. I appreciate you calling me on it. I’m new on the site and am here for the exact reason you stated…some comfort.
Although it was only a few decades ago…my grandmother was in a special situation where she wasn’t getting any treatment or therapies at all which helped with the progression of the illness. The only reason I mentioned it was because although the cause of MS is still unknown, heredity is a possibility.

Thank you for your support. I mostly would just like an explanation to whats happening to me. It would solve a lot of issues.

That must have been quite a shock finding out like that.

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