My Mysterious Health Journey

[WilhelmRilke]

Me + 1 three day cold (I got from not getting enough sleep) =

4 months of 24/7 labrynthitis/vestibular neuritis
followed by...
1+ yrs of neuromuscular issues

I have tested negative every which way in regards to **/*** and after a year of symptoms (which include weakness, twitching, numbness, cramps, tightness and the rest of that bundle of joy) I am left holding some shapeless and nameless condition that is part BFS, fibro, ME, and any other "benign" post-viral neuro condition that can be thrown into the mix. It hit my life like a wrecking ball and I am only just now beginning to pick up the pieces and try to move forward with this monster hanging on my back.

I have come to accept that there is a lot of grey area b/n there being nothing wrong with me (it's anxiety!) vs it's ** or ***. I have also come to realize that something "benign" can still be a horrible, non-stop, terrifying, pain in the rear.

Oh, and hi!

 

[MorrisM]

Hi rilke23,

A warm welcome to the site. I see you have been through the familiar treadmill and have come out the other side in a good frame of mind; by this I mean realizing that you are going to live but that BFS is a real pain in the ass (and probably a twitch there too ).

I hope you'll hang around here for a while and chip in from time to time

Greetings,

Morris_M

 

[emmaengland]

Hi

I just got a cold too...ish...a weird kind of chest infection that was awful for a few weeks, but nothing in comparison to the emotional feckedness of days, weeks, months spent staring into the abyss of BFS fear.

I hear you. I was telling my fiance the other day about how important this forum is to me, how it keeps me level. bBut at the same time I'm never truly, deep-core-of-me convinced that I'm actually ok. As a result I still milk this forum - I can't truly give advice and tell others not to worry when I'm still in that 'grey area' as you say.

I hope it's enough just to say 'I hear you', and for you to know that there's someone else sharing your frustrations and thinking, on a good day, that maybe we'll both be ok.

Best wishes,
Emma

 

[WilhelmRilke]

Thanks. Coming to terms with the grey area part has helped me a bunch. For a year I was stuck in the cycle many people are, part of which is frankly caused by doctors being condescending and not listening imo. For someone to experience all the things I did (and others of us do) and be told its psychosomatic is not only hugely frustrating but does zero - zilch - nothing to help. If the only explanation was that I was either making it up or I had a progressive neurological illness, its easy to see how you get caught in a trap, especially when your symptoms are 24/7.

It is still difficult to deal with. For one, I see so many people here terrified of "weakness"" showing up. For me, weakness showed up on day one. It wasn't fatigue like I was tired. It was my right foot being harder to walk on, my right hand losing grip strength, weakness all down the right side of my face. Add to this the twitching and spasms and you can see where your mind goes.

That's why it helped me a ton when this last neuro I saw acknowledged the muscle loss in the right side of my chest and specifically checked that muscle during that emg. That's why it helped me a ton when he told me that in spite of all my symptoms, in spite of the muscle tone I had lost, that this is still most likely due to a post-viral neurological syndrome.

So, anyway, if I could add one thing for others out there, its don't assume the worst just because your symptoms do not fit the BFS/Fibro/ME/CFS profile perfectly. There is a ton of crossover and overlap between these conditions. The thing to keep in mind is that while they all ROYALLY STINK, they are for the most part manageable. And try to remember the people who come away from those MRIs and EMGs with bad news and what they have to go through. Not saying we should feel ashamed or guilty... but let's just say if the US Senate had a sudden outbreak of BFS, I'm guessing funding for a whole bunch of neuro diseases would skyrocket.

 

[Medusa13]

but let's just say if the US Senate had a sudden outbreak of BFS, I'm guessing funding for a whole bunch of neuro diseases would skyrocket.

True! Autoimmune disease as well.
-c