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Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.] |
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02-09-2019, 11:03 AM | #1 | ||
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Newly Joined
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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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05-09-2019, 01:56 PM | #2 | ||
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Newly Joined
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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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05-09-2019, 04:50 PM | #3 | |||
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Grand Magnate
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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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Knowledge is power. |
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05-09-2019, 10:49 PM | #4 | ||
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Newly Joined
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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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"Thanks for this!" says: | Mtnmomma (05-18-2021) |
09-16-2019, 03:00 PM | #5 | ||
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Newly Joined
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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:
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09-18-2019, 07:54 PM | #6 | ||
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Quote:
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08-17-2020, 10:32 AM | #7 | ||
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New Member
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Dear Knotter, Any updates, please? It is my understanding that the clinical trial is suspended indefinitely until after Covid. They notified me of the suspended status in May, and I cannot get any reply from the Harvard research team at this point for updates. We are curious to see how patients are doing who are already receiving actual immunomodulatory treatment. I have read of two case study patients with very positive results, and heard of a handful of others and read one positive and one negative report in this thread. Most, however, give no updates on the progress. Please let us know if your daughter has improved, declined, stayed the same, only had steroids, had Rituximab, Infliximab, or another monoclonal antibody treatment, had IVIg, etc. ! Knowledge is power but compassion and dedication are the keys. Gratefully, Aaron |
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10-21-2020, 09:17 AM | #8 | ||
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New Member
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Hi! Were diagnosed with the same problem (autoimmun small fiber neurophaty with TS-HDS and FGFR3 Autoantibodies ). Is there possibly someone from europe who is receiving ivig treatment? Is it possible to self-finance treatment in Europe? Thanks in advance!
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01-19-2021, 10:49 PM | #9 | ||
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Newly Joined
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I tested positive for TS-HDS as well.
For some reason the search in this forum shows zero results for "ts-hds" |
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02-06-2021, 03:39 PM | #10 | |||
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Co-Administrator
Community Support Team
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Try "antibody test" for the search word..
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Search NT - . |
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