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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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09-16-2019, 03:00 PM | #1 | ||
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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 | #2 | ||
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08-17-2020, 10:32 AM | #3 | ||
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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 | #4 | ||
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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 | #5 | ||
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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 | #6 | |||
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Try "antibody test" for the search word..
__________________
Search NT - . |
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08-26-2019, 03:30 PM | #7 | ||
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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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"Thanks for this!" says: | Mtnmomma (05-18-2021) |
09-27-2019, 09:56 PM | #8 | ||
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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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"Thanks for this!" says: | Rileylyn (05-08-2020) |
11-19-2019, 10:43 PM | #9 | ||
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Meanwhile, IÂ’d like to hear your pros & cons for the 750 mg methyl prednisone @ 1 hr X 3 Days then do this monthly if it helps. Did you have downtime? Worries about getting sick, hyper, etc. My local RA has reservations of complying with Duke neurologistÂ’s request due to adverse reactions of other patients. Thanks in advance. |
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10-29-2019, 08:23 PM | #10 | ||
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