Hi All, you seem to have a nice Community here, so I'm jumping in, and as this is my introduction post, it will be a bit long, with my personal and medical background, but I'm mostly interested in those of you that suffer from severe "Brain Fog" Numb Face, Distorted vision.
Also... I am creating this post with line breaks... I see there's quite a problem in this forum, and I have trouble reading a lot of the posts, so, if this is all bunched together when you're reading this, I'll be researching how to edit my posts, recognizing my line breaks.
Well... My condition / History....
- 3 years ago, left foot went numb for 6 months, then got better, I didn't think much of it.
- 2 Years ago left leg had MASSIVE attack, all muscles seized, shooting electrical pains, lost use of it for 3 days, most pain I've ever been in my life, leg was mostly numb for 6 months, then it got better,
- Last year.... In the middle of nowhere, I thought I was having a stroke, face went flush, room got 1000 feet away, I collapsed, and from the moment I stood up, my leg was numb again, my face was numb, vision distorted, felt like I was extremely faint, weak, falling, distant, and although some days have been tolerable, this general feeling hasn't gone away for a year. the Brain Fogginess the worst / lingering symptom.
- 2 Weeks ago - another "Attack" of sorts where I felt like I was "Hitting the dirt" it was like someone dimming the lights, and throwing me off a building, more of a Falling then spinning (Not vertigo)
This relapse / attack, has been 2 weeks of hell, the numbness in my face I can feel all the way deep, from my neck, to in behind my ocular socket, my leg completely numb, center of my back is numb, Arm / pins n' Needles, elbow joint VERY tender, vision distorted, but the brain fog.. Ugh, it's overwhelming.
It feels like I'm in an altered dream state, of an altered dream state, but not happy and euphoric... it's a distorted, drugged feeling nightmare.
I've been in bed 3 Days, I got up for 5 hours today, (To go to the doctor), and now I'm back in bed, writing this.
A Bit about me.... I'm a musician / music producer at the very top levels. I'm a kind, passionate driven alpha / leader, that has allowed me to build a career, with clients that sell some of the most unit sales on the planet.
My "Position" being a creative in the business, does not make me rich, or even "Comfortable" - I have to work very hard for my keep, but I love everything I work on, and the people I work with, so the passion that drives it, never has me feeling stressed, or run down.... till this year.
Although not stressful to me (In the past) some of my Job descriptions are to Fly to NYC to play guitar on a talk show, or even fly to Tokyo for the weekend, to produce & mix to air, a simulcast concert, performed in front of 25000 people, broadcast to 14 Million, live, to air, no safety net, etc...
There's NO way I could ever put myself, or my clients in those positions, with this condition, I can't even make eye contact with people, as I'm anxious they'll see the panic in my eyes, as I feel like I'm being thrown off a building, and they're getting further and further away.
I am a strong character, and I'm overwhelmed with fear with this condition.
I have So many Q's however, I should divide them out over several posts / threads, this being my 1st, I'll try to focus on my Biggest concern..... My cognitive ability to "Stay in the room" with people, and be emotionally / passionately engaged in what is going on.
I can deal with bad vision, numbness, but my mental state (As I'm sure is everyone's primary concern) is the only thing that allows me to do, everything that I am qualified to do.
Medical Findings (Or lack Thereof)
1st Neurologist went down an Inner ear, Meniere's / BVVP / Migrane / path, and kind of "Gave up"
2nd Neurologist tested me for EVERYTHING, a year of tests, blood work, MRI's, EKG, CT's, and disqualified virtually everything I could find, including MS.
The ONLY test with results, was a tilt Table test, which my blood pressure dropped 25 minutes into standing on the table. The MRI's showed no lesions on my brain or Spine (They didn't do a Contrast)
I recently looked up MS,(Found this forum) and it's the 1st condition disease I've found, that I have all the symptoms, and the description of it "Showing up suddenly" struck a nerve with me (Pardon the Pun) However, this is the 2nd neurologist that insists this is not MS, and we're continuing to try different meds relating to the Neurogenic Syncope and hypotension displayed on the Tilt table.
He says the Absence of lesions on the MRI's in combination, that MS would not cause a drop in Blood pressure, make him certain this is not MS.
My thought, is that there is NO Spinal disc trauma, this is all Nerve related, there is nothing wrong with my blood work, (He even said today, almost as though getting angry at me, "Well your symptoms simply aren't Jiving with what I'm seeing in the test results)
So I'm thinking, even if this is not MS, but my injuries / symptoms are exactly the same, I wonder if similar treatment would 1. Help alleviate the symptoms during this relapse / attack. 2. Help prolong remission if I ever get there again.
Now for the "Brain Fog Q's to the group"
- Are there any success stories with specific meds that help take the edge off of what i'm describing, for those that feel this symptom?
- How do you cope? keep your jobs? I've been in bed for 3 days, and I'm trying to rest as much as I need, but I don't know if I'm making it worse, so I'm forcing myself to go for pretty long walks, but that's wearing me completely out. I Literally tried to work for 20 minutes today, and just went for a walk, grabbed some steamed vegetables, and laid back in bed, to write this novel, after only being up for 5 hours today.
- Permanent Damage, I've read a lot about MS, and it's basically stating that during relapse, some permanent damage is being done, I have an example with "Most of my leg" coming back, but the Knee Cap always being Numb for 2 years... I'm so afraid, as this "Brain Fog" hasn't "Completely lifted" in a year... that this is permanent damage, and that now, in this last 2 weeks, where I can barely see straight, and I'm completely zoned / effected / that this is causing permanent Brain damage.
Inconclusive tests and meds, while this feels like it's spinning out of control.
I have a couple of travel dates coming up on the Calendar, I'd like to be able to keep my career, and I don;t know if I should "Push through till I fail" or weather or not I need to withdraw... then that opens a whole other discussion on Depression / Imagining not being able to connect with people, interact, work, keep a decent quality of life. Those thoughts get really bad at night, and wake me in the morning, then, for the most part, I force myself into what ever I'm able to do for that day, trying to live one day at a time.
Anyways... Wow, that's enough for now... I hope everyone is doing well. thanks for your time.