Discussions By Condition: I cannot get a diagnosis.

I am perplexed

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: AKHarsh
  • January 14, 2009
  • 10:51 PM

I posted this in the wrong area apparently and have been told to repost it here.

I began having problems in the 80's. Neurologist at Walter Reed claimed it was Chronic Pain Syndrome. Others have labeled it Fibromyalgia, Peripheral Neuropathy, Parkinsonism. The symptoms include pins and needles, burning, crawling sensations, phantom glove and sock, shooting pain in the extremities, sharp stabbing pain. A lot of the pain seems to focus on previous injury sites, the most recent being the scar from a laporoscopic colectomy. A more recent symptom is severe myoclonic jerks. There is some trembling and painful toes. Numbness occurs in the fingers at times and it feels like my legs are falling asleep. My Neuorolgist originally diagnosed idiopathic polyneuropathy, but now claims to be puzzled. Has anyone else experienced anything like this and, if so, what has been done about it.

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13 Replies:

  • Get checked for celiac disease.
    aquila 1263 Replies
    • January 15, 2009
    • 05:25 PM
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  • Thanks for your response Blaze. I've been tested several times for Lyme disease and they've all come back negative. I've also been tested for heavy metals because I was a HAZWOPER for several years. All negative. However, I do appreciate your suggestion.
    Anonymous 42789 Replies
    • January 15, 2009
    • 10:33 PM
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  • Correct me if I'm wrong, aquila, but isn't celiac a disease of the intestinal tract? I had the colectomy because of severe diverticulitis.
    AKHarsh 6 Replies
    • January 15, 2009
    • 10:45 PM
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  • Please describe the first symptoms you began to notice in the 80s when this all started. Tell me specifically how it has progressed. Also tell me your occupation and gender if you don't mind. I simply ask because it's important to realize that with suspected neurological disease, all roads eventually lead to Rome but the characterization in the development and progression of symptoms can be definitive. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 16, 2009
    • 01:27 AM
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  • Thou there is a subgroup of those with CFS who do get neurological issues as part of the illness esp the ME subgroup of CFS. (I have CFS and have been mistaken at times for a parkinsons patient by nurses who have seen me. due to my symptoms).... your issue thou seems neurological alone. The thing with CFS is that CFS patients get not just neurological symptoms but the illness affects most parts of areas of their bodies eg will often have immune like symptoms, hormonal issues, muscle pain etc etc. It's a multi-complex illness. Thou your neuro symptoms can be in CFS/ME i myself dont at all think you have this illness based on my experience with it. (ive had it for 12 yrs and know 100s of others with it.. Im currently working on doctor education to do with this illness). I think your symptoms are caused by something else (unless you have symptoms affecting other systems of your body which you havent mentioned). http://wwcoco.com/cfids/bernesx.html (also check out the canadian CFS/ME diagnostic guidelines which are recognised world wide as being the best CFS ones.. to see if you fit. I think you may find you dont. (well you dont with what you've just said here)
    taniaaust1 2267 Replies
    • January 16, 2009
    • 03:55 AM
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  • J Cottle, MD My first recollection of pain in 1984-5 was pain in the legs and arms. Walter Reed AMC diagnosed it as Chronic Pain. The symptoms have been assorted. Sharp stabbing pains in the feet, arms, legs and hand. Numbness in the toes and fingers. A sensation like someone was cutting me on both arms, at the same place. Crawling feelings across my feet and sometimes crushing feelings in the fingers or toes. Progression was slow, but steady. If there is a body part that has nerves, I have felt pain there, including eyelids and scrotum. I'm a 56 y/o male, retired U.S.Army First Sergeant. Since retirement, I've worked as a HAZWOPER, doing environmetal remediation work (been tested for heavy metals) and am currently a Supervisor in our cities water distribution division. The has recently (within the last 2 years) been an onset of trembling. Possibly a side effect of the meds. Within the last 9 months, I've developed violent myoclonic jerking and some minor problems with focusing. I've been thru 3 psych evals that proved normal and my last EMG showed some minor nerve damage. I'm going for another one in three weeks.
    AKHarsh 6 Replies
    • January 16, 2009
    • 10:08 AM
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  • aquila, I owe you an apology. I checked out a site for celiac and found this: BACKGROUND: Celiac disease (CD) is increasingly recognized in North America and is associated with a peripheral neuropathy. OBJECTIVE: To report the clinical characteristics and skin biopsy results in patients with CD and small-fiber neuropathy symptoms. DESIGN: Case series. SETTING: Academic peripheral neuropathy clinic. PATIENTS: Eight patients with CD and neuropathy symptoms.Intervention Three-millimeter punch biopsy using the panaxonal marker protein gene product 9.5 to assess epidermal nerve fiber (ENF) density and a gluten-free diet. MAIN OUTCOME MEASURE: Clinical data and ENF density. RESULTS: All patients had asymmetric numbness and paresthesias. Three had more prominent involvement of hands than feet, and 3 had facial numbness. Celiac disease was diagnosed in 5 after their neuropathy began. The following serum antibody levels were elevated: tissue transglutaminase (n = 6), IgA gliadin (n = 4), and IgG gliadin (n = 7). Results of nerve conduction studies were normal in 7 patients. One patient had mildly reduced sural amplitudes. The ENF density was reduced in 5 patients. The ENF density was at the low limit of the normal range in 3 additional patients, 2 of whom had morphologic changes in axons. Three patients had decreased ENF density at the thigh or forearm, which was more severe than at the distal leg, compatible with a non-length-dependent process. Four reported improvement with a gluten-free diet. One had no improvement after 4 months. Symptoms developed in 2 while receiving a gluten-free diet. CONCLUSIONS: Patients with CD may have a neuropathy involving small fibers, demonstrated by results of skin biopsy. The pattern of symptoms, with frequent facial involvement and a non-length-dependent pattern on skin biopsy findings, suggests a sensory ganglionopathy or an immune-mediated neuropathy. Improvement of symptoms in some patients after initiating a gluten-free diet warrants further study.
    AKHarsh 6 Replies
    • January 16, 2009
    • 10:10 AM
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  • What medication are you on?
    Felsen 510 Replies
    • January 16, 2009
    • 10:13 PM
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  • My current meds are Lyrica, Neurontin, Wllbutrin, Klonopin, and Lunesta
    AKHarsh 6 Replies
    • January 17, 2009
    • 11:29 AM
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  • You don't mention muscle weakness or atrophy, but if present then the course described would suggest chronic inflammatory demylenating polyneuropathy (CIDP) or alternatively progressive inflammatory polyneuropathy depending upon the outcome of certain test result criterion. The fact that the EMG demonstrates "mild nerve damage" would tend to suggest CIDP, or at the very least within the class of demylenating processes but I would be very interested to know precisely what the EMG report stated. Mild nerve damage is not typically the prognostic language used to describe the outcome of the test. When you mention trembling, I want to be certain that we're speaking of movement, whether rhythmic or erratic, of the affected limb or digit rather than focal twitching of the muscles or skin, which would represent fasciculations and more representative of loss of neuronal conduction. I'm rather surprised that your doctors haven't elected to pursue treatment with IVIg and plasmaphoresis, which in some cases has diagnostic value if patient symptoms improve. Axonal myoclonic jerks have been observed in patients with polyneuropathies as well. I would not tend to consider the cause to be psychogenic, but the stated involvement of both proximal and distal nerve tracts in polyneuropathies in general is rather remarkable and may have led your clinicians to question the possibility. I would be interested in knowing the results of your pending tests if you'd care to publish them on the forum and if you would, please recite the actual description rather than generalizations in order for me to obtain necessary information. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • January 17, 2009
    • 00:34 PM
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  • The trembling I mention is in the hands. I shake so bad sometimes that it is difficult to eat or read a paper. There has been no signs of muscle weakness. Latley there is pain in my feet with every step. I would suppose the trembling to be a side effect of the meds. As soon as I get the latest test results, I will post them.
    AKHarsh 6 Replies
    • January 18, 2009
    • 11:04 AM
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  • EMG was done and, as expected, the results were normal. Discussed having a skin punch biopsy done with my Neurologist, but he has decided that it would be unnecessary to put me through that procedure as he is convinced now that I have small fiber sensory neuropathy. He claims the procedure is slightly disfiguring and it would serve no other purpose than to confirm what he already knows. He has also stated that my pain levels have exceeded his level of capabilities and is referring me to a Pain Management Clinic. Incidently, he has also ordered an MRI on my head, which I am surprised he didn't do months ago.
    AKHarsh 6 Replies
    • February 15, 2009
    • 02:54 PM
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  • The trembling I mention is in the hands. I shake so bad sometimes that it is difficult to eat or read a paper. There has been no signs of muscle weakness.I have the same thing with a tremor in my hands. For me, it was diagnosed as Essential Tremor. But, I don't know that is what you have or how it relates to your other issues. However, you might want to ask your docs about it. It's not life-threatening or anything and mine is controlled nowadays. Other family members of mine have the same thing, to varying degrees. The meds you are on can cause tardive dyskinesia. This side effect can be permanent, if that's what's causing the trembling. Ask your doc and maybe adjust your meds.
    Harmonium 322 Replies
    • February 15, 2009
    • 05:19 PM
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