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Axonal Sensory Neuropathy IgM TS-HDS

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Old 09-27-2019, 10:56 PM   #11
britt9138
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Join Date: Sep 2019
Location: connecticut
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Default anti mag antibodies ts-hds 13000 and fgfr3 16000

yes I am here....they are in stage 2 of clinical trials at harvard deaconess in boston using sodium chloride+ infusion. My issue is balance and gait
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Anyway, I guess I am just wondering if there is anyone else out there...
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Old 10-29-2019, 09:23 PM   #12
Katkeyper
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Location: North Carolina
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Default TS-HDS newbie

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Originally Posted by Intl Trainer View Post
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...
Hello - I feel for you. I sadly left my career in January. I had not been there long enough to qualify for disability, but it was obvious I needed to take time for my health. I've had a crazy journey since 2018, but I hit the doctor jackpot in February and March. One of my many diagnoses is Small Fiber Neuropathy with TS-HDS. I hope to start a 3-day/1hr per day Cortisone IVIG in December and may pulse this on a monthly basis after, depending on my reaction. I'm allergic to seemingly everything, including botox. I have fibro pain, neuropathy, exhaustion, headaches, brain fog, and so many more issues are ongoing. I actually have repeat allergy testing tomorrow (already have Alpha Galactose (allergy to red meat) and angioedema). I am in the process of completing SS disability paperwork. I hope my collective issues will qualify. I am 53 and chose a career over children, so this is huge - I get it. Sending positive vibes your way.
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