I'm joining the group for support. My journey started at the end of September, when I had weird skin sensations down the back of both legs. A few days later I lost the function to urinate...urinary retention. Then I began having numbness in my entire back saddle area, pelvic region, etc. Then down the back of my legs, skipping the back of my knees, and into my feet. Over those two weeks I had multiple testing and and the last ER visit I had a spinal tap. That was a Friday. That also my first visit with a neurologist. She was suspecting either Shingles internally or autoimmune. I had to go to the ER that night bc it was late in the day when I saw her. The following Monday she and I spoke and agreed I needed to be admitted so we could at least prophylactically treat me until we knew what was going on. She and the infectious disease dr worked together. I was hospitalized for 6 days. I received iv acyclovir, a three day round of Immunoglobulin anti-bodies and steroids. Two days into the stay my bladder function finally returned, which we thought was due to the acyclovir. I hadn't started the anti-bodies yet. All of my autoimmune bloodwork was negative with exception of one that may indicate Sarcoid. So that's when we started the immunoglobulin. I was discharged after all the IV therapy was done and sent home on steroids and oral acyclovir. My mri with contrast of the lumbar sacral region conclusively showed that I had inflamation of the meninges and spinal root. I have not been in any pain. Only the numbmess in my feet and pelvic region. Today - two weeks later I followed up with my neurologist. She finally had my spinal tap results and indicated that I have Acute Inflammatory Demyelinating Polyneuropathy - or as she said - Axonal Sensory Guillan Barre.
We are going to do another round of immunoglobulin therapy. She prescirbed gabapenton and also a topical compound cream to help with the tingling. I will also see a Rheumatologist do to my one area of blood work that is elevated for Sarcoid. Also begin Physical Therapy, to make sure I don't get any further weakness. I really don't have muscle weakness. I'm just really tired. I don't have pain, just pins and needles.
I am praying that I get my sensations back in my peri-anal area and feet. I also have Raynaud's and I think that also is rearing it's head while all of these nerves are going crazy! I am a very vibrant and active 51 year old female. She said I am looking at a 3 - 6 month recovery and may not get all nerve sensations back. She has no way to tell. I think we treated me early on. From stories I read, being treated 2 1/2 weeks after the first sympton isn't too bad. Thank goodness I have not had any muscle weakness, it's just numbness. I am relieved to finally have a dx so we know exactly what to do. I am out of work on Short Term Disability. I am in sales and drive for a living. Until my feet are back to normal or close to it, I cannot be driving for my job.
I'm posting all of this just to say Hello. I'm being as positive as I can that I will heal.
Thanks for reading. I welcome anyone's comments and insights.
on June 16 I was admitted to the hospital in later diagnosed with GBS. I’ve been told I have a “mild case” I lost the use of my legs and most of my arms for only a couple of weeks. I was in the hospital for a month and rehab for a week. I am now living alone and taking care of myself two weeks later. I have numbness and pain sometimes my arm, but more alarming is yesterday I had a some...