Discussions By Condition: Nerve conditions

Spinal/Nerve Disease?

Posted In: Nerve conditions 7 Replies
  • Posted By: Pammie
  • January 26, 2007
  • 00:09 AM

Hi,

I had a fall in June 2006 and started using a cane. I was diagnosed with arthritis the prior year, so they thought my slow healing from the fall was just arthritis.

But starting in August, I started to feel weakness in my right arm which I initially thought was carpal tunnel. Then the weakness started in the upper right arm and then the left arm, particularly in on the outside/peripheral part of my arms. Then my legs to the point I can barely walk and have gone from a cane to a walker and now they are talking scooter.

I have had every blood/urine test you can think of - they have tested for everything. At first they thought is was metastatic cancer which was spreading. I was hospitalized to take more tests, a CAT scan, a lumbar puncture and MRIs. They found a cyst in my pelvis area, a goiter in my throat and some unexplained happening on my spinal cord. I just had another MRI (brain) today. My neurologist just called to say that my muscle biopsy was negative, so now we're back to the original pre-diagnosis of some kind of nerve damage/disease near my spinal cord which has no treatment or cure. Before this, it was muscle damage/disease or ALS. I am having another EMG soon because my doctor says this is progressive and my symptoms will change from time to time.

I am very scared, frustrated and feeling depressed. I am a single parent with 2 kids and a mother with cancer. There is no way I can live with this crippling disease and take care of my family let alone take care of myself. Does anyone have any suggestions or theories.

Desperate Pammie

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7 Replies:

  • Just a thought for you, but my dad was going through similar things as you, same tests etc., and has finally been diagnosed with stiff person's syndrome. It can be detected with blood work. I guess it is a particular antibody that comes up in the blood work. He too, was thought to have ALS, but this is not the case. All I can say is keep pushing. Hang in there. You are the only one that knows your body and don't let anyone tell you otherwise.
    MelanieZ 5 Replies
    • February 1, 2007
    • 02:11 AM
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  • Melanie, Thank you so much for the info! I had never heard of SPS - with all of my internet searching. Someone for the first time today with no harm intended asked me if I was in denial because I said that I wasn't buying into my preliminary diagnosis. I said that I was more in disbelief and somewhat depressed because otherwise, I am healthy and all of my tests have come back negative. I know I am ill, but ALS as the only diagnosis at this point is not totally making sense to me. The symptoms of heightened sensitivity to stimuli, rigidity and muscle spams, I have daily. And as I look at my lab results, I have NOT been tested for glutamic acid decarboxylase (GAD) antibodies. I see my neurologist next week on Friday and have requested to have this test performed. Thank you so much for responding to my post. I will let you know the results! Pammie
    Pammie 4 Replies
    • February 1, 2007
    • 05:55 AM
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  • :) Hi Pammie: Your symptoms did intrigue me, because this is exactly what my dad went through. He would begin a spasm when a dog barked or if a child cried. Good luck to you. Melanie
    MelanieZ 5 Replies
    • February 1, 2007
    • 00:57 PM
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  • Here is the response from my doctor:Pamela, I'm not sure where some of this is coming from...anti-GAD doesn't make much sense clinically (although i will order it for you - its a send out test that will take a couple weeks to come back)...AML*****************What do you make of the apprehension?Pammie
    Pammie 4 Replies
    • February 1, 2007
    • 06:48 PM
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  • Hi: I guess some Doc's don't like being asked to perform tests. Who knows? I think though it is best to have every avenue checked. Best of luck to you. Melanie
    MelanieZ 5 Replies
    • February 2, 2007
    • 01:49 AM
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  • According to the Merck Manual of Medicine, certain parasites... worms.. can enter the brain and cause many problems. Often undetected by blood or stool samples. Also, if you have silver (mercury) fillings in your teeth, these have significant bearing on the state of ones nervous system.. Im going through a similar problem that I am seeking information on after six years of convulsive seizures... now it seems, possibly caused by the things mentioned above. Good luck, James
    donnellansouth 1 Replies
    • February 9, 2007
    • 02:22 PM
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  • Do you have numbness in your arms/legs, or just weakness?This could be either a problem with the nerves or muscles or spinal cord.If this is really a progressive problem and your neurologist doesn't have an answer or any treatment, then I would seek a second opinion, preferably at a university center where they have specialists in neuromuscular disease.
    Anonymous 42789 Replies
    • February 14, 2007
    • 04:11 PM
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