Axonal Sensory Neuropathy IgM TS-HDS

willie13 · 09-16-2019, 03:00 PM

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

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.

knotter · 09-18-2019, 07:54 PM

Quote:

Originally Posted by willie13

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.

âmeligérienne · 08-17-2020, 10:32 AM

Quote:

Originally Posted by knotter

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.

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

Dimenter · 10-21-2020, 09:17 AM

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!

Neurauto · 01-19-2021, 10:49 PM

I tested positive for TS-HDS as well.

For some reason the search in this forum shows zero results for "ts-hds"

Jomar · 02-06-2021, 03:39 PM

Try "antibody test" for the search word..

uncleEDS · 08-26-2019, 03:30 PM

Quote:

Originally Posted by Intl Trainer

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.

britt9138 · 09-27-2019, 09:56 PM

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

Quote:

Anyway, I guess I am just wondering if there is anyone else out there...

Katkeyper · 11-19-2019, 10:43 PM

Quote:

Originally Posted by britt9138

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

I contacted someone about small fiber neuropathy with TS-HDS (20,000) IVIG trial in Boston, but it was first run, didnÂ’t cover the 8-9 travel visits from NC and 50% chance of placebo. I have additional idiopathic neuropathy (etc.) and autoimmune issues. Lots of pain, fatigue, numbness, ice cold knife-like pain.

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.

Katkeyper · 10-29-2019, 08:23 PM

Quote:

Originally Posted by Intl Trainer

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.

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
Axonal sensory	Stephen	Peripheral Neuropathy	1	01-26-2015 07:09 PM
Very mild axonal sensory	Stephen	Peripheral Neuropathy	10	10-01-2014 07:26 PM
axonal sensory polyneuropathy	suzybear	New Member Introductions	4	05-03-2014 07:52 PM
Sensory Axonal Neuropathy	BonDon	Peripheral Neuropathy	8	04-03-2014 09:21 AM
Axonal Sensory Motor Polyneuropathy - ?	inspirations	Peripheral Neuropathy	23	07-08-2013 05:11 PM

Site Navigation

NeuroTalk Online Support Groups

Axonal Sensory Neuropathy IgM TS-HDS

NeuroTalk Forums