Discussions By Condition: I cannot get a diagnosis.

New here, and undiagnosed...sigh!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Nervous Wreck
  • January 26, 2008
  • 05:50 AM

Hello everyone!

I'm new here, and would love to hear any ideas you may have, either for the illness causing my symptoms, OR for tests that should be run.

It started just over 2 years ago, about a month or so after my youngest daughter was born. It was funky little shock like feelings in my left calf, they were extremely annoying, and kind of painful...since then things have progressed. Below is a list of most of the symptoms I have had since it all started.

*Electric shock sensations body-wide
*Vertigo spells
*Sore spot on scalp
*Muscle twitches in legs (fasciculations)
*Movement Hesitancy-arms
*Sudden jerks in the legs, ankles and wrists (and once in the neck)
*Clumsiness (dropping things, trouble picking things up)
*Neck pain (like a kink in the neck but lasting weeks or even months)
*Stiff left calf muscle
*Numb left side of my throat and mouth
*Muscle spasms (mild to moderate) in legs, arches of feet, stomach, back and neck
*Stabbing pain through the eyes
*Inability to swallow solid foods for 1 month, and throat intermittent throat discomfort since.
*Migraines
*Colon infection
*Numb hands when waking up
* Plantar fasciitis (??)
*Weakness in hands and arms


The tests I have had done are:

Various blood tests (all normal, except chronically elevated lymphocytes and liver enzymes)
CT scan of brain and c-spine (normal)
Barium Swallow (showed possible esophageal web)
Gastroscope (completely normal, despite results from the barium swallow)
MRI of brain and c-spine (clear, I’m told)
Psychological Evaluation (I passed, without a prescription being issued! LOL)

If there's anything else you'd like to know, ask away. I've had 3 different PCP's since this all started, and 1 neurologist (who was completely disinterested), I have heard a multitude of possible diseases listed (including Fibromyalgia, Chronic Fatigue Syndrome, MS, Chronic Lymphocytic Leukemia...you get the drift) and would just love some answers, no matter what they may be.

So...bring it on. I'm at the point where I am looking to take any ideas I can find to my doctor (who's at a loss, and I have a great relationship with).


Anyway, thank you muchly!

Christine

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8 Replies:

  • Hi ChristineThese symptoms sound extremely familiar........I have not yet been able to get to the bottom of it either!My doctor is currently researching Lyme disease on my behalf, maybe worth looking in to.Good Luck :-)
    Adam2953 28 Replies
    • January 26, 2008
    • 00:50 PM
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  • I have had the same symptoms with pain everywhere and muscle twitches and even a seizure and docters didnt know anything either , and neurologist said im fine even when i was twitching uncontrollably in front of him and i had all those tests you had. Try detoxifying your body , because toxic chemicals can build up such as metals and many other chemicals can be in your body attacking your nerves, just google a website that sells detoxifying products, http://www.i-amperfectlyhealthy.com/terramin.html , try these guys they sell a clay that you can mix with water and drink and the chemicals will attach to it and will leave through kidneys, its only like 30 bucks for 2 pounds i think. Ask yourself do you think you were exposed to any chemicals because your body is telling you something is wrong , its worth a shot , I have been detoxifying for a month and I see a small improvement and I had really bad symptoms for 2 years which made me pretty much on disability.
    ontherooftop 3 Replies
    • January 26, 2008
    • 04:11 PM
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  • Far as I know, muscle twitching, spasm, or ***k is called a myoclonus, and in the majority of cases it is a benign condition.Of course it can indicate serious illness, such as Alzheimer's, Parkinson's, multiple sclerosis, or brain tumor, but the tests you already had have ruled out most of these. Provided you have no memory loss or speech impairment, have you?
    annaPEB 29 Replies
    • January 26, 2008
    • 04:51 PM
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  • Did you get an epidural at childbirth? Most of your symptoms sound like classic symptoms of Arachnoiditis which can be caused by an epidural gone wrong. Did they have trouble inserting needle or did you hear them say the classic "oops" when they inserted the needle too far?
    Anonymous 42789 Replies
    • January 26, 2008
    • 07:09 PM
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  • Thanks for the thoughts everyone. No, I never had an epidural, too freaked about the needle in the spine. 4 babies, no epidural, and now I'm looking at probably having a lumbar pucture to assist with diagnosis (being positive for problems, or negative for problems, both would be diagnotically significant). How unfair! LOL Christine
    Nervous Wreck 3 Replies
    • January 27, 2008
    • 04:24 AM
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  • I'm sorry you are going through such an ordeal trying to get diagnosed. It took me 8 years to get diagnosed. I saw 8 neurologists and was worked up for MS, Lupus, all the MS-mimickers, etc etc. Most of my doctors decided that I was nuttier than a jar of Skippy when all of my labs and scans came back negative.So, I certainly do not want you to go through what I just did. I had a lot of your symptoms. It was my 8th neurologist, a movement disorder specialist, who finally diagnosed me with Hashimoto's Encephalopathy. It is a rare complication of autoimmune thyroiditis. My thyroid finction had been checked numerous times over the years, and I was repeatedly told my thyroid was okay because my hormones were okay.Fortunately, the last neurologist had heard of HE and checked my thyroid antibodies. Both my thyroglobulin and thyroperoxidase antibodies were highly elevated. And subsequent imaging of my thyroid showed that it was full of tiny nodules from the autoimmune destruction.HE is highly treatable with steroids. I am also on Levoxyl now.Most doctors have never heard of HE, so don't be surprised by this.While I don't know if this is what you have, I would definitely look into it if nothing else pans out. Doctors are trained to check thyroid antibodies only after a person's hormones come back abnormal, so chances are you have not have your antibodies checked yet.Another illness that may be overlooked is celiac disease, so you might want to look into this as well. It can cause all kinds of neuro symptoms and you don't even need to have GI symptoms to have it. It can cause elevated liver enzymes, too.If neither of these pan out, keep looking for other autoimmune and neurological things. I am happy you have a good doctor and hope he/she will not give up easily. Hang in there! I will pray you get your answer soon.
    Anonymous 42789 Replies
    • January 27, 2008
    • 05:35 AM
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  • Hi there.. As far as CFS goes, thou it can cause all kinds of weird and wacky neuro, gut and immunity problems, stuff like you are experiencing, I think you should be able to rule that off your list if you dont also have sleep issues (95% of CFS people have sleep issues) and the following. With CFS also post exertional exhaustion is present, (I dont think you have much of an issue with that seeing you didnt mention it.. any CFSer would mention this issue in a post as it's real bad!) and also usually there is also cognitive issues (eg memory loss, concentration problems etc etc something you didnt mention either). So as one who knows a heap about CFS having had it for over 11 yrs and being involved in many CFS communities.. i think you can count that diagnoses out (dont allow a doctor who dont know anything really about it, to lumber you with it), unless you have also the issues I just mentioned. I also have Fibromyalgia ... and from what you described.. it doesnt really sound like fibromyalgia you have either. .......................... my suggestion to you is to go to www.chronicneurotoxins.com and take the free tests there and if showing up as being postive.. do the other one (i myself found it was worth it), as your condtion could be being caused by neurotoxins (which is a fairly new field which most doctors know not much about). Over contamination by a neurotoxin is the closest condition I can think of which would match your symptoms. Someone else here suggested toxins.. I'd like to add to that, to be aware that heavy metals in the body dont always (they may but they may not) show up on tests unless released a little (certain meds.. not something to mess with). This is cause if they've been in the body for a while, they can be bound up by the fat in our body. So you need someone who knows what they are doing in that field to be tested properly for the amounts of heavy metals in your body and also to make sure you are safely decontaminated from them if excessive toxins or heavy metals or found. Also consider something like lyme, lyme causes a lot of neuro issues .............. Anyway.. count that CFS out.. it shouldnt be a waste basket diagnoses and is an actual illness.
    taniaaust1 2267 Replies
    • January 27, 2008
    • 07:14 AM
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  • Thanks again for the responses! I have kind of kept thyroid issues in my head although numerous TSH tests have come back normal. My mom has Grave's Disease, and her mom has Celiac's (we're an auto-immune mess in my family, that's only 1/2 of it! LOL). The main reason CFS was ruled out by my doc (and me too) was because of the lack of post exertional malaise. I do suffer from fatigue, and mild memory issues, but it's not usually too bad. I happen to be having a particularly bad time of EVERYTHING the last few weeks. Some sort of flair I suppose. Another reason I ruled out fibro is that my intolerance is heat. Cold doesn't phase me too much (good thing cause it gets MIGHTY cold here), but I can not STAND the heat. My grandmother and aunt both have fibo, so I had a couple of good conversations before ruling that out as a very viable possibility in my mind. I've been thinking of asking my doc to run my thyroid antibodies, as I know thyroid issues can be sneaky and can cause neuro issues. Thanks for the affirmation. Thanks again for all the great input everyone! Christine P.S. as for toxins, or neurotoxins, I don't know what type of risk I would have. I've just a stay at home mom for 2 little girls. I have never worked in a high chemical atmostphere, most of my jobs were in retail sales, and have moved around a fair amount so was never really in 1 home too long. I'll definately keep it in mind though.
    Nervous Wreck 3 Replies
    • January 27, 2008
    • 10:09 PM
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