Idk how I can try and work Part time.
It feels as if Once or twice every 2 weeks I become bedridden. I am literally in bed with extreme body fatigue. My legs my arms and my mind are in an exhausted state.
Recently I traveled with my husband and daughter to a Rugby game in Ohio. We made stops so I can walk a little. I did sitting/ standing at the field. The temp was hot. And air quality was at alert. It felt like 104 degrees. We didn’t stay long.
A 5 1/2 hour drive and my daughter played the first 15min. She ended up with heat exhaustion and passed out. We ended up leaving and headed back home. She ended up recovering as we traveled back home. I felt my new normal of fine. However, as the evening went on We finally are home my body took its turn of exhaustion again. My legs and body were feeling extreme fatigue. I spent complete bed rest of 48 hours. My legs did not want to move at all! My arms were heavy to even lift up. My head felt as if I had too many cocktails and balance was off. Was I was regressing.?? I was getting scared! I don’t want to be paralyzed again! I called Dr. Gupta and my Family PA. 3 days in bed.
Bed rest of complete 48 hours!
Dr. Gupta called me back and informed me that heat and sun can mess with my nerves. He has diagnosed me with not CIDP but with GBS.
Dr. Gupta said he has some calls to make and thinks I should be seen with a rheumatologist and ? Infectious Disease.
Dr. Bradshaw a Dr at Upstate specializes in GBS.
A Dr. Gil Wolf from Buffalo looked at my case. I’m not sure of how much of My case he has seen. He seemed too busy. I know my last EMG test looked ok. He thinks I should see someone at Upstate as they are a teaching hospital and could assist me more locally and run other tests.
I am at a loss! I want to work so bad! I get a release from Dr. To work PT. Who would hire me? If I have a bad day it turns into days! I need answers. The Educational facility that I collapsed at in October 2016 is holding my job for one more year. After that they have to take me off. I have worked is Special Ed as a TA loving every second. I even asked the School if they could find or make a job for me working 1-1 with a behavioral child in a low sensory padded room. Even if I could help one student at a time. They cannot. I am so frustrated still waiting for disability to get approved. Get a lawyer. I did what has that done? Ummm nada I’m still waiting!
I was fine one day. Go to the Drs for a script get a cyst frozen off my head behind my ear. Within sec have a horrific brain freeze. Dr says follow up with MY Dr.
Drive home feel weird. Go to work and push thru only to collapse and end up in hospitals, Drs, specialist, and therapy’s and still not getting a full answer. Only BS answers of you have Afasia- Stress-migraines- Viral Meningitus- neropathy- neuritis- -
Chronic condition C-5, C-6, C7
Coug spinal stenosis
Trader Ulnar Palsy
Acute aseptic meningitus
Viral Meningitis secondary to Late acute EBV and co-morbid polyneropathy
Post viral fatigue syndrome
Vestibular nerve damage
Parenthesis of skin and
Weakness. Latest and newest diagnosis post infectious GBS.
I am now almost 2 years later and I am still waiting on everything.
I want to move on! I am trying to move on! I am not the energetic energizer bunny Gail I was. I can’t!
I try when I feel I am having a great day only to fail and become bed ridden! Please someone has to know something?!.