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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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07-23-2012, 08:17 PM | #11 | |||
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07-25-2012, 06:17 PM | #12 | ||
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07-26-2012, 07:05 PM | #13 | |||
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Since you have dry mouth and neuronopathy, you should not discount Sjogren's with just a Schirmer's test. You could try to inquire about labs drawn for Sjogren's (SSA & SSB). I believe even with the NHS you can get lab results...just not as easily as in the US. The lab where they put the specimen in the sand was likely for cryoglobulin.
My symptoms include dry mouth/eyes, neuropathy pain, and severe autonomic neuropathy (which involves heart rate, BP, temp control, urination, gastroparesis, balance, vascular spasms...and the list goes on). I also have APS (antiphospholipid syndrome) which is a clotting disorder that has caused 3 strokes. I have a whopper list of meds...6 just for the heart & BP. I also take Plaquenil for the Sjogren's, several GI meds, blood thinners, and minimal pain meds. I did IVIG for 9 years but stopped after a severe case of aseptic meningitis from it. I may try again one day. I also had fairly good results from Cellcept (cancer drug/immune suppressant) for the short time I took it. I did not have luck with antidepressants, as you have. I also tried anti-seizure meds like lyrica and neurontin, but again they didn't work. The damage caused to the dorsal root ganglia from Sjogren's is irreversible and there is no known effective treatment as of now. The objective is to reduce pain, which you apparently have been able to do to some extent. Your treatment may not be different if you pursued the cause of your diagnosis...other then plaquenil to treat and slow progression of the Sjogren's itself, or use Rituxan. I am curious about one other thing. What test confirmed the neuronopathy? I am not aware that a skin biopsy can diagnose this by itself as it is used to determine small fiber neuropathy. Is this the test they said confirmed it, or was it a conclusion? |
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07-27-2012, 04:50 PM | #14 | ||
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You asked what test cofirmed the neuronopathy I surmised it was the skin biopsy as the neuro spoke about the dorsal rooot ganglia and i hadn't a clue at thetime what he was talking abot and because I still don't understand it all yet, I am a bit nervous as I destroyed the letter I got from the professor which mentioned anti-Hu antibodies and cannot remember whether it stated that I showed with or without so now thinking that is why the dx is neuronopathy what are your thoughts?(be totally honest), I would appreciate if you have time if you could give me a few pointers what I should be asking, my problem is I am not a pushy person and a bit shy. How are things with you at the moment, are you in a lot of pain, how do you cope from day to day, do you have family living with you, do they understand? Hope this finds you in not to much pain..........tc .......Marie |
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07-28-2012, 03:19 AM | #15 | ||
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07-28-2012, 06:31 AM | #16 | |||
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First, it sounds like you could use a good cardiologist to isolate the cause of the palpitations. Keep in mind, it's easier for a doctor to attach the label of idiopathic vs take time to find the cause. If you have any autonomic dysfunction (which can be common with certain types of neuropathy--ie, autoimmune), then palpitations (AND accompanied dizziness) are likely a result of that...and in most cases easily treatable with medicine. It's a matter of proper testing to identify the arrhythmia. This goes way beyond a simple heart monitor.
Don't buy the "dizziness is from infection" unless you have a raging infection and are severely dehydrated or something. You need a doctor to start investigating the cause of these things. BTW, the reflux can also be related to some delayed emptying...another autonomic dysfunction. Is the medicine he gave you helping? It really sounds like your doctor drew a conclusion about the neuronopathy based upon your history of PN and then the addition of SFN (dx from the skin biopsy). The anti-Hu antibodies woudl also play a role. And it sounds like his conclusion may be/probably entirely correct. Just from reading your posts, I think (guess) you may also have some autonomic dysfunction going on as well. If I were you, I'd ask about some testing for the palpitations, dizziness, GI, etc. This would include a tilt table, 24-48 hr holter, 30 day event recorder (all of which needs to be done by a cardiologist). If you have any early fullness when eating or nausea/discomfort after eating, I'd add a GI empty test to check for delayed emptying. And knowing how common this type of neuronopathy is with Sjogren's, I'd get them to follow-up with more testing...maybe even a lip biopsy to confirm or deny the condition. As for me, my pain, coping, etc. It's been a struggle recently, to be honest. I have continued progression and what is like a game of medical mgmt to keep up with it. And of course, pain can be very draining. But that said, I drive on because attitude and outlook is half the battle. I do have major surgery next week to replace my pacemaker, so that will likely set me back in other ways as well...as things like surgery can cause a flare of symptoms with autoimmune conditions. I am lucky though that my husband and son (a Marine who happens to be home right now on leave) are both very supportive. Other then my comments above about requesting testing, you should just tell your doctor that you want to look at the "whole" picture and how your neuropathy can/will effect other systems (some that it already appears to be doing) and that you want to be pro-active about mgmt to stay on top of your condition as best possible. Your interest expressed in this way might encourage him to agree to be more thorough. |
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07-28-2012, 07:28 AM | #17 | ||
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--as a mediating cause of neuronopathy are usually a sign of an occult cancer; this is considered a paraneoplastic syndrome:
http://neuromuscular.wustl.edu/antibody/sneuron.html#hu If you did show up with Anti-Hu antibodies there should be an immediate search for a primary tumor. But this would likely have caused the doctor to get in touch immediately. I would suspect that means you're negative for these, but it wouldn't hurt to check. (You do have to be your own advocate. And get copies of all test results.) |
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07-29-2012, 01:53 PM | #18 | ||
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07-29-2012, 02:08 PM | #19 | ||
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10-20-2012, 07:54 PM | #20 | ||
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Hi
I am new to this forum and i have exactly the same diagnosis. It is a rare condition - Can I email you direct to discuss further. Thanks Quote:
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