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Axonal Sensory Neuropathy IgM TS-HDS

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Old 01-04-2018, 01:29 PM   #1
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Default Axonal Sensory Neuropathy IgM TS-HDS

I was just diagnosed with Axonal Senory Neuropathy because of IgM antibodies binding with TS-HDS. I was exposed to some toxic chemicals in my new house 9 months ago and that started this whole journey. I was wondering if there was anyone else out there with this diagnosis. There doesn't seem to be a treatment. This has progressed really fast for me and now I feel burning all over my body, nerve headaches, numbness in legs, malaise, and just feeling neurologically impaired.

I am hanging on to my job by a thread and know that in the coming months I will have to go on STD or try to find a new job. I am sad that my very wonderful and successful career is over. I feel lonely because its hard to talk about this with other people. I am only on LDN as other drugs make me ill. I take a lot of supplements and go to PT. My neurologist is trying to get IVIG approved but since my skin biopsy is negative I am losing hope... I am going to try to pay myself for 3 months to see what happens. An infusion clinic near me is giving me a very reasonable price.

Anyway, I guess I am just wondering if there is anyone else out there...
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kiwi33 (01-04-2018)
Old 01-04-2018, 04:09 PM   #2
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My Mood: Axonal Sensory Neuropathy IgM TS-HDS

Hi Intl Trainer

Welcome to NeuroTalk .

As far as I can see the role of IgM specific for TS-HDS in Axonal Sensory Neuropathy is poorly understood.

This paper might help both you and your neurologist Clinical and laboratory features of neuropathies with serum IgM binding to TS-HDS. - PubMed - NCBI.

Best wishes.
Knowledge is power.
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Old 06-29-2018, 03:47 PM   #3
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I have the same diagnosis and am responding to IVIg infusions.
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Old 02-09-2019, 10:03 AM   #4
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Default Me too

I have recently been Dx with IgM TS-HDS as well. My hand pain is excruciating and my toes are begining to go numb. Yesterday I heard that BCBS has denied IVIG so come Monday I will be starting IV steriod INFUSIONS every day for a week and then 1x a week for 6 weeks. I am NOT looking forward to this treatment! Hoping after this treatment insurance will accept on appeal.
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axonal, feel, months, ts-hds, wondering

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