Hi, let me begin by saying how grateful I am that I am not the only one going through this horrible, undiagnosed, state of limbo and also a little alarmed at the state of the health care diagnostic system.
My symptoms started last June and have been getting worse by the day it seems like. I was going to explain my entire story but I hadn't even got through half of the story when I ran out of characters so I am just going to explain my symptoms the best I can and hopefully you guys can help. First you should know that not all these symptoms are happing at all times they happen intermittently from each other it is always different from day to day, some happen more frequently at night and others plauge me through out the day. Except when I get what I call my "Pain attacks" which have happened 4 times in the past five months lasting from 1 day to 4 days.
First symptoms were; numbness and tingling in hands and feet, twitching and mild fever.
Slowly progressed to; muscle twitching all the time (mostly in bottom of feet, legs, chest and face)
Pain in spine, ankles, tops of feet, neck(front and back), forearms and chest.
Weird feeling in middle of spine when not in pain. ( kinda like a knot or a golf ball pressing on it.)
Muscles tense when resting
Severe constipation weird halo feeling at top of skull
Tingly feeling around my upper torso
Confusion, unable to finish a thought or a sentence.
Chills or goosebumps for no reason
Cluster headaches (Occipital Neuropathy)
Feeling like my face is swollen when it is not
Twitching when I smile ( only happened once during a pain attack)
Trouble walking, specially up and down stairs.
Legs feel heavy
Painful Cramping muscles (feet and legs mostly)
Dexterity problems with hands
All joints cracking (knees, elbows, shoulders, ankles and wrists)
Tired all the time but can never sleep through the night if at all.
The pain is always changing it can be a sharp, burning or stinging feeling, or a cramps pain or a muscle tear kind of pain or more of a pain in my bones.
The tests I have gotten so far and known health problems are:
ECG, Abi and Leg Doppler, X-ray of chest and lungs, an EMG, MRI and a bunch of blood tests.
The ECG showed I have sinus tachycardia and a stage 1 AV block - 4 months ago
X-Ray of chest and lungs were clean - 3 months ago
Blood tests show low vitamin D and high cholesterol and elevated levels of troponin (not heart attack levels). -between 5 and 2 months ago depending on which test.
A Surface EMG, -4 months ago found nothing rebooked another appointment for this February.
MRI and still waiting for the results.
At first I thought it might be MS but the more I read about it the less I think it is ms. My symptoms are progressing way too fast and though I do have "bad days" there is never really a single day that I feel totally normal there is always at least one symptom rearing it's ugly head. Plus my eyesight has just recently started bothering me in the form of cloudy vision and it comes and goes as well.
I have been doing my own research since it seems futile to get my current doc to do the extra leg work and I came across a disease called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) my symptoms seem to fit this disease a lot better. The only problem is, is that I have had an EMG and it said my nerve conduction was fine. It was 4 months ago when I first started experiencing my symptoms could it be that it just wasn't progressed enough yet? Should I be pointing my doctor in this direction? Is there anyone out there who knows someone with this disease or who has treated someone with it that could shed some light on my situation? Please help I am desperate for anything at this point.
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