Question: Thank you for your follow up on my health

I am building on my original post (bottom of page) in which you provided a helpful answer. You did not believe my issue was anemia related. You thought the symptoms I described aligned in favor of CIDP/Chronic inflammatory demyelinating polyneuroradiculopathy, but needed confirmation. You suggested MRI spine with gadolinium enhancement to support the nerve root involvement & CSF/cerebrospinal fluid examination.

Since my post,
I saw a third referred neurologist. I don't think I'm aligning with the right experts locally, because the answers I've received have been vague (and maybe misguided?). I have an out of state appt with the XXXXXXX Clinic Neuromuscular group next week and am hoping for some expert care.

In the meantime, the third neurologist suggested that a normal EMG omits the possibility of CIDP, but suggested my physical exam and symptoms looked like CIDP. I wonder if this is always the case as I've heard drs. triage that with symptoms and other tests. She offered no other theory. See my notes on what I've tried now for her feedback. I fear because I'm getting weaker (hard to pull/lift my body up a small step) that I am getting worse when we could start treatment. I'm getting more exerted, wobbly. I can't manage the heal to toe & afraid I will break a bone next.

Like many others, I have a small child and I work (right now they allowed me to work from home, but typing is getting very hard). I am really getting a run around and wonder if there is anything in my notes below I'm not prioritizing/highlighting.
I really want an answer and don't understand the decision tree on some of these tests.

Is what I was told about the EMG likely? Are there any other disorders that mirror CIPD symptoms and timeline?

My current symptoms and original are post below.

Current Symptoms:
Very wobbly- lose balance/coordination- can’t manage a heal to toe (look intoxicated)
Legs feel like Jello- still progressing this week
Sometimes my knees feel locked
Arms weak
Drop items: e.g. when brushing hair/ issue with grip
Can’t maneuver objects (open bottles, close buttons, zip pants, etc.)
Hard to lift body: up from floor, onto bed
Hard stepping up
Voice gets raspy at times or I struggle on some pronunciations
Cold hands, feet
Hands can be cold but also sweating & swollen/red with somewhat stiff fingers
In warm water, I get inflamed- frost bitten itchy feeling, red skin
Motion sickness
Metallic taste on lips & with water
Numb lips and tongue
Occasional mild pain
Exertion
Stocking Glove in AM/wake up- Feet feel like in paraffin wax
Bowel and urinary changes- thought uti but was not
Frequent urination (may be related to OBGYN issues), dark yellow urine

First Post:
It's been 2 months since started with paresthesia like symptoms which progressed to extreme weakness in my limbs and hands ands chronic swelling in my hands, occasional pain and scratchy voice and metallic taste on my lips and with water.

The weakness now is constant. I have a hard time walking or getting my body up (lift). I have shortness of breath with any exertion, sometimes chest tightness and motion sickness in car. I frequently urinate and have uti like symptoms but UTI outruled. Anything hotter than XXXXXXX warm water, gets me swollen & sometimes I get a frost bite type of itch that makes my skin crawl.

The onset followed a bad virus at the end of October, followed by a first time flu shot in mid November when viral symptoms seemed clear. Not two weeks later, the symptom presented.

Some things have been ruled out and tests underway. The viral angle/CIPD has not been explored (appts this and next week), but my question is whether it is dangerous to go this long with obvious inflammation (hands swollen and red). Sed rate was just taken again, but 5 weeks ago was at 40 (when only paresthesia like symptoms). I've been swollen and red in hands for almost the entire time.

Also can anemia present these type of symptoms?


also, my obgyn ordered a pelvic ultrasound. It's been a year since my original when he suggested surgery. The problem has worsened and I am very tender in abdominal (very bloated). He stated that action needs to be taken, but he needs to review the results to look at our options. He confirmed that the coccyx pain could be related, but said while lower weakness could be possible, it does not correlate due to my corresponding upper weakness (likely 2 different medical issues).

First,
I'm concerned about a major surgery while I have no answer on my weakness.

Also, I wonder if some type of toxicity or internal bleeding from the OBGYN situation could cause these complications 7/or go undetected in MRI.

I can't get my mind around going from good health a year ago to 2 major unrelated issues:)

Thank you very much. I'll be pursuing a diagnosis aggressively and this is helpful information in reviewing my case. Too bad you weren't local:), because I agree that valuable time has been wasted.