Having a rough day

Although I have had a number of unexplained symptoms over the past couple of years, my current acute episode of symptoms has lasted 8 months and I still have another month to go until my first consultation with a neurologist. I started with my PCP, then Urgent Care, then the ER, then back to my PCP, then an orthopedist, now finally on to neurology. Meanwhile, my symptoms are getting worse by the day and it seems like new symptoms are popping up every couple of weeks.

I have steadily had numbness, tingling, nerve pain and a creepy crawly discomfort in my arms and legs for months which has been increasing in severity. Then I started developing weakness making it hard for me to type, hold a phone or book. Then my foot gets shaky and fatigued trying to press on the gas pedal. Then I developed a small tremor, then little twitches or spasms.

As of today, now my face has gone numb. I called the neurologist to see if I could get in any sooner and they said no, just go to the ER. Well the ER is who told me just to go back to my PCP in the first place and didn’t do any imaging. Not to mention they are full of COVID patients and I would probably just be sent home anyway.

I just broke down and started crying. I don’t know how much more my symptoms will progress before I have my first appt, not to mention how much longer I will have to wait after that to have any tests run or begin any type of treatment.

All the while I am suffering each day at a high stress job. I just feel so defeated right now. Why does it have to be so difficult???

Sorry you’re having a tough time Rhea.
I’m going through similar, it feels so lonely and futile at times.

Have you asked for GP to flag your neuro referral as urgent?
It may help. I asked my GP to do it and she had no issues doing it.

Best of luck.

Hi rhea,

I read your post and feel like I had to respond as I have been going through this journey for a number of years.

I can totally understand how everything is making you feel upset , you just want answers.

I can relate to the creepy crawly feeling like there’s a spider crawling up my arm , I’m am constantly slapping my arm trying to catch it lol

Once I had my first appointment with the neurologist things have started to move a bit faster with tests and everything so don’t worry

I too found my self getting upset and frustrated but just hang in there and hopefully you will get your answers soon.