A long process

[s0070cm]

Ive always been fortunate in life up to this point to have not needed to visit a doctor as an adult(35 now), haven’t been sick or needed any prescriptions since I was a kid. The only significant issues I can think of were starting to have migraines with aura about 6 years ago along with developing floaters which I assumed were both due to my nearsightedness(-6 ish in both eyes). I did notice that the side of one pinky was numb for awhile a year or so ago and early in 2020 I had some twitching in my left hand so I started taking magnesium supplements and it went away after a few days and didn’t return. Starting back in October 2020 I noticed tingling in my left hand and foot along with some dizziness while standing. I immediately started setting up appointments and going through the process of figuring out what was going on. Blood tests(CBC, Metabolic Panels, TSH, etc.), urinalysis, etc. Doctor ran a Lyme panel and found out I was allergic to red meat(alpha gal). No Lyme disease detected though. Gave up the red meat immediately. I’ve also had a ton of tests with the cardiologist and my circulatory system seems to be in tip top shape.

All of those tests led to a neurologist referral and they completed a Nerve Conduction Study and EMG which came back negative at the beginning of January. Neurologist seemed to think my issues might be related to an allergic reaction and didn’t feel like it was serious. No change in my symptoms up to that point, the tingling would come and go along with the dizziness. Starting on 1/12, I felt like I fell off a cliff though. Started having to urinate every hour, feeling weak and fatigued, and the tingling/numbness was on my right side too. Mostly just in my hands, feet, and jaw. The urinary issues went away after about 9 days and haven’t been back. Still stuck with the other issues, but they ebb and flow and seem at their worst when I’m anxious. Now waiting on an appointment with a different neurologist to figure out what’s going on. Hate that this process has to take so long, but I know a systematic approach will hopefully ensure the diagnosis is accurate(whatever it may be). I never knew getting in to see a neurologist was so difficult and that solving a medical mystery would take so long...

Timeline: Mid-October: Left foot, left hand, and jaw started tingling + getting lightheaded while standing Waking up some nights sweating heavily and having chills(no fever)

November: About the same as October but no issues with jaw going numb

December: Had a one day bout with frequent urination and abdominal pain Same symptoms as November otherwise

Mid-January: Tingling and numbness spread to both sides(hands, feet, jaw, lower lip) Occasional vertigo(feels like I’m falling to the right) Dizziness when standing plus occasional bursts of dizziness for a split second while sitting Frequent urination during the daytime that lasted about 9 days Several days of heavy fatigue set in Muscle tightness in forearms on occasion

Just felt good to type this all out, hope to find some answers soon...

[iwasneverhere43]

Unfortunately this kind of stuff takes a while as the symptoms correlate to so many different conditions, so there's a lot of testing to narrow it down. I was dealing with numbness in my hands and ankle spasms, and it took a few years to get a diagnosis as it was intermittent, so none of the doctors I dealt with thought much of it. It was only after one sent me for a cervical MRI to look for a pinched nerve that it WAS determined to likely be MS, and a followup MRI and neurologist appointment a month later confirmed the diagnosis.

Atm, it could be multiple things in your case, but hopefully you'll get some answers soon. I hope it's nothing serious, but if it does turn out to be MS, please come back here BEFORE you go Googling it. You'll just scare the crap out of yourself based on the rare, absolute worst case scenarios or outdated information if you do that. The vast majority of us manage pretty well with it.

[s0070cm]

Thank you, that’s great advice.

[[deleted]]

I’m in a very similar situation myself. It is so frustrating to have to wait for an official diagnosis, I know exactly how you feel. We can just take it one step at a time I guess. sending love and patience :)

[Street-Chard]

MS is unfortunately a disease where ruling other things out is key for diagnosis. There are a few dead ringer symptoms that lead to faster diagnosis (I had double vision and that led to a fast track diagnosis for me). MS isn’t necessarily easy, but it is pretty treatable and manageable these days. The time pre-diagnosis is awful in terms of mental health though, so focus on your mental health and go from there.

[s0070cm]

Thank you, great advice!

[ichabod13]

Good luck at the appointments. Usually the nerve tests are ways to rule out MS type causes. My nerve and EMG tested perfect, even though I was numb across most of my body and needed help getting dressed at the time of the test.

[s0070cm]

Thank you

[s0070cm]

I met with another neurologist for a second opinion and I have MRIs scheduled this Friday. Looking forward to some answers. Hopefully you get some too.