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Axonal Sensory Neuropathy IgM TS-HDS

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Old 01-04-2018, 02:29 PM   #1
Intl Trainer
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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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Old 01-04-2018, 05:09 PM   #2
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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.
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Old 06-29-2018, 04:47 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, 11:03 AM   #4
Hahndoghotcakes
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Default Me too

Hi,
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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Old 05-09-2019, 02:56 PM   #5
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Default What is the cause?

I was diagnosed with TS-HDS antibody that is causing my peripheral neuropathy in hands, feet and possibly my scalp...around five years ago. My neurologist has no other information to offer and there is simply not much, if anything at all, known about this antibody that destroys the antibodies protecting the nervous system! If anyone would take the time to enlighten me on this affliction, I would sincerely appreciate your effort. I am also 78 years old....why the late onset? Is it purely genetic?

Thank you....
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Old 05-09-2019, 05:50 PM   #6
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Hi NRose

Welcome to NeuroTalk .

TS-HDS is a component of the surfaces of neurons. What can happen is your immune system produces antibodies of the IgM class which react with it; this can lead to small fibre neuropathy.

As others have mentioned above, one way of treating this is use of IVIg (intravenous infusion of antibodies mainly of the IgG class).

This slightly technical link explains some of these ideas IVIg for Small Fiber Neuropathy With Autoantibodies TS-HDS and FGFR3 - Full Text View - ClinicalTrials.gov .

Best wishes.
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Old 05-09-2019, 11:49 PM   #7
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Default Thanx

I appreciate the response, Kiwi!!!! Today I faxed my medical records to Dr. Levine who is one of the collaborators in the study you referred to me to read. I do reside close to him(a state next door) ;consequently, when it was suggested by someone at Washington University Neuromuscular Clinic to contact him, I thought about it. That was two years ago and since my symptoms have changed I am finally pursuing some answers. I am only hoping he will consider taking me as a patient.

Sounds as if some of the people participating in this thread are in this study group. Thanks again! N
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Old 08-26-2019, 04:30 PM   #8
uncleEDS
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Quote:
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...
I’m the same I think. I also have EDS, MCAS, and SFN, POTS?
I’m still waiting for confirmation but my results for TS-HDS is 19,000 and my norepinephrine levels are high also. I was thinking it was hyperadrenergic POTS, but after reading this I think this might be it. They also are thinking it could be a pheochromocytoma because of my elevated catecholamines and Metanephrines? But I’ll know on Wednesday hopefully! My allergist suggested Hyzentra SQ if IgG is required.
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Old 09-16-2019, 04:00 PM   #9
willie13
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Default Update on steroid infusions?

I also just got this diagnosis and my doctor wants to go straight to steroid infusions. Do you have any updates on if this helped you?

I have horrible pain, brain fog, burning, cramping, and I have breathing difficulties. I am so desperate for some reflief.

Thanks in advance.




Quote:
Originally Posted by Hahndoghotcakes View Post
Hi,
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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Old 09-18-2019, 08:54 PM   #10
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Default

Quote:
Originally Posted by willie13 View Post
I also just got this diagnosis and my doctor wants to go straight to steroid infusions. Do you have any updates on if this helped you?

I have horrible pain, brain fog, burning, cramping, and I have breathing difficulties. I am so desperate for some reflief.

Thanks in advance.
My daughter just got the diagnosis of TS-HDS this summer. She just started steroid infusions. From what I can understand it appears to be a hoop we have to jump through to have insurance approve IVIG. We are doing infusions every 2 weeks.
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