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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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01-04-2018, 02:29 PM | #1 | ||
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Newly Joined
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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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01-04-2018, 05:09 PM | #2 | |||
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Grand Magnate
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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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"Thanks for this!" says: | Rileylyn (05-08-2020) |
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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07-07-2020, 10:58 AM | #4 | ||
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Congratulations, Iglascoe! May I please ask, who is your neurologist?
I have this diagnosis as a severe case unresponsive to opioids (other than one that I cannot tolerate because it causes severe systemic edema) along with autonomic symptoms and two positive biopsies showing rapid atrophy of my IENFD in the lower dermis. Two Neuro-muscular specialists have written in my chart that I should receive IVIg, but neither is willing to write the script and deal with the scourge of our insurance system. I have little bodily function and spend most of the day wearing a diaper, curled in a fetal position crying. I am hopeless, but I know that if I could just access treatment, I have a high chance of enough amelioration to have a meaningful quality of life and a future, a return to my career and a relationship. I am fairly young and have a college degree and have lived and worked in France and started teaching myself Italian, and now, after subacute onset at 31 and rapid decline... I am a mere shade of the man I was. Any direction would be appreciated. Some doctor has to have compassion and look at the science and realize the risks are lower of attempting IVIg than fentanyl for decades and this condition with my autonomic system and sensory nerves. Heavy steroids could tell us something too, but that is risky business in our COVID world, and I feel IVIg would be safer despite the price’s being inflated due to greed. Grateful for any leads! -Aaron |
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08-16-2020, 09:28 AM | #5 | ||
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Hi Aaron,
So I finally started IVIG in February. It is now August and I am doing horribly. I since have gotten a diagnosis of Hashimoto's. My nails are all white and painful, sometimes they turn blue. My feet are excruciating and I cannot lie or walk without extreme pain. I have trouble breathing all the time. After an iron infusion my nails turned turquoise. My heme is a moron and says "I don't know why" but that I should get another infusion. I won't do that. I cannot tolerate heat, cold, sun, standing, or lying down. I am just in pain all the time. And the horrible pain people at Stanford will give me Tylenol and say something like "you need to get back to your life and stop being so depressed" I was on steroids and azathioprine in December and my Liver enzymes went up and now I have horrible abdominal pain in my RUQ and LUQ. Liver enzymes still have not normalized. I lost 20 lbs in a month. because I was so nauseated and had extreme pain. (In the fall Had a Hida Scan for my GB and after had a horrible attack and then had this dry skin for months which culminated in this crackling rash on my legs and neck this year). I had three cracked teeth and finally the fourth dentist I saw diagnosed a tooth infection in March. Then I had a liver biopsy which was mostly uninformative, some small beginnings of nothing they could define well. So I will probably have to do that again. While not relevant to you, I had my menses for 60 days straight, and now I barely have it at all. My lymph nodes in my pelvis are swollen and I have a swollen bump on my left buttock I think from the pressure on the dilated vein in my pelvis (I have pelvic congestion syndrome and nutcracker syndrome). My gastro is making me do the breath test AGAIN and the smart pill. Luckily I took about 800mg of aspirin last week and quite a bit of the pain in my gut disappeared. I have asked about all sorts of clotting disorders because of my C3 C4 and ANA, but I basically get ignored. I am being referred to a specialist for Mastocytosis, but that is unlikely. Like you, I lie around most of the day and my gut is just a mess. I used to be so active. One thing I have finally done is completely cut out any and all fat in my diet (besides all the other typical stuff) and I no longer eat protein from animals. Going vegan with zero/very low fat has helped me at least gain some weight back. But I had tried every stupid autoimmune high fat diet before and only ever got sicker. Right now the burning in my toes and legs is horrific. I can barely walk and my skin is dry and my legs ache all the time. Covid is the only reason I am keeping my job as I can do it from my bed, otherwise I would be applying for disability....which is really depressing because we will likely have to sell our house because it does not pay enough for us to afford to live (California is extremely expensive). I am the breadwinner in our home so it will be a massive blow. |
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08-17-2020, 10:24 AM | #6 | ||
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Hi, Iglascoe!
Any updates on how you are doing, please? Are we to assume you got well and got busy being back to the business of living life? Many of us, including myself, are waiting with baited breath and are scarcely clinging on. Thankfully, Aaron |
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02-09-2019, 11:03 AM | #7 | ||
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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 | #8 | ||
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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 | #9 | |||
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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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05-09-2019, 10:49 PM | #10 | ||
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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) |
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