Discussions By Condition: I cannot get a diagnosis.

5 months, 4 doctors and 3 trips to the emergency room. What more can I do to be taken seriously?

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: Anonymous
  • October 19, 2014
  • 09:37 PM

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)
Extremities jerking
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
Heart palpitations
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
Cloudy vision
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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11 Replies:

  • This could be fibromyalgia I have same symptoms which is chronic fatigue syndrome ME
    Anonymous 1 Replies
    • October 28, 2014
    • 01:16 AM
    • 0
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  • Is the MRI of your intracranial anatomy? Is your current doctor a neurologist, at this point? If not I recommend you move on to a good neurologist. Make sure the new doctor has a rating of 5 or near 5 from patients.
    Anonymous 1 Replies
    • November 1, 2014
    • 08:18 AM
    • 0
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  • Wow, sure sounds like MS to me. Have you had an LP (Lumbar puncture)? This would definitely rule out (or in!) MS. With that many symptoms I would encourage you to seek out a good Anesthesiologist and have a spinal tap. You'd know for sure!
    Anonymous 1 Replies
    • November 14, 2014
    • 04:14 PM
    • 0
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  • It does not sound like fibromyalgia and you are unlikely to get a diagnosis of CIDP or anything similar with a negative EMG, because it is more likely to be used to slam the door on further testing. Your symptoms are very much like mine and I have yet to get an adequate diagnosis. Spinal tap, yes, and immune function tests may help. Recommend sub-specialist in Peripheral Neuropathy with expertise in immune-mediated.
    melamine 1 Replies
    • November 18, 2014
    • 02:38 AM
    • 0
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  • You need a good neurologist in my opinion. So far it seems like your medically on the right track in the process of procedures".
    Chronic inflammatory demyelinating polyneuropathy or sensorimotor demyelinating polyneuropathy is a pretty wide spectrum... It is an outcome of other conditions and if you can't find the one factor to treat your individual cause you might be chasing your tail like me. Best thing to do is brush up on family med history. Genetics might play a role. Praying for you.
    Anonymous 1 Replies
    • November 22, 2014
    • 03:45 AM
    • 0
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  • Look up (WEGENERS glandularsyntosis?)if you use google it will come up as soon as spell correctly the 1st word..WEGENERS..for the other repliers you too may want to look this up,it is highly undiagnosed & misdiagnosed I had all your symptoms and more at the end of 2 years but for a lot of people they are within hours of dying, the sooner it is caught the better. I had diagnosis of everything other repliers have had and more before they figured it out. including 4 types of Cancer. Hope this helps
    Anonymous 1 Replies
    • November 23, 2014
    • 06:43 AM
    • 0
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  • Please read the book "Could it be B12?" and watch this video

    Anonymous 1 Replies
    • December 12, 2014
    • 04:00 PM
    • 0
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  • Please look into Chronic Lyme disease. Symptoms match exactly what my sister has and it took her almost two years to get a positive diagnosis.Even if you don't remember having a tuck bite and even if you test negative for Lyme.False negatives are common, and only about 25% of those effected get a bullseye rash or even remember any tick bite. There are so many horrible neurological symptoms with Lyme disease. It often presents like MS. I think it would definitely be worth looking into.Good luck! No matter what it is, you have to research and advocate for yourself.And no matter what anyone says, you are not crazy and your pain is real.take care
    Anonymous 1 Replies
    • January 2, 2015
    • 11:42 AM
    • 0
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  • Please do your research before being convinced of Chronic Lyme. I also had symptoms I could not explain and an LLMD diagnosed me quickly with Lyme, even with a negative Lyme test. After much researching, I finally found out what was wrong with me and it wasn't Lyme. Please go to a reputable infectious disease doctor and not an LLMD. Good luck!
    Anonymous 1 Replies
    • January 7, 2015
    • 08:26 PM
    • 0
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  • I believe you have Fibromyalgia I have alot the same symptoms/ very hard to diagnois since no test for it , but wide spread pain over body sometimes achy sometimes feels like every muscles is electric charged tingling plus all the other symptoms you mention I have. very frustrating since no test can prove your symptoms Doctors have a hard time believing so you start to think you are crazy, but you are not because I suffer from this too all the same symptoms all at different times. I feel your pain and frustration, hope you find help.
    Anonymous 1 Replies
    • February 4, 2015
    • 10:48 PM
    • 0
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  • Sorry to hear you are having so many ailments....if you are interested in hearing about the Healing qualities of Essential Oils, take a look at this website:

    Anonymous 1 Replies
    • February 21, 2015
    • 06:26 AM
    • 0
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