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Axonal Sensory Neuropathy IgM TS-HDS

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Old 09-27-2019, 10:56 PM   #11
britt9138
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Default anti mag antibodies ts-hds 13000 and fgfr3 16000

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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Anyway, I guess I am just wondering if there is anyone else out there...
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Old 10-29-2019, 09:23 PM   #12
Katkeyper
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Default TS-HDS newbie

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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...
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.
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Old 11-18-2019, 07:05 PM   #13
NeedleInHaystack
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Default SFPN - IGM vs TS-HDS Binding Answers

Hope I can help some people out here, as the past 16 months since this ultimately landed me in the ER for a week, I have been on a results journey to say the least. VERY Long response but worth if for many.

I ended up in the ER 16 months ago because after dealing with losing feeling / tingliness of the skin, at the same time as throbbing and burning pain in the muscles and bones in my arms and legs, one Sunday to spread to the left side of my face, jaw and my neck. Passed off the previous years of these feelings as a pinched nerve or something but went into ER because thought it might be a stroke. In 2013 my pelvic Floor went out and in spasm. Said it was Prudential Nerve entrapment but really think it is more autoimmune because pelvic floor did not settle down to normal until recent. I am still taking the lowest dose Flexeril at night to calm down nerves and muscles.

After checking me thoroughly, CT-SCANS, MRIs, they discharged me from ER with inconclusive maybes of Post Virus attacking my left facial nerve, maybe Bell's Palsy, maybe shingles on the inside, maybe the early stages of delayed MS. Gave me Valtrex and Prednisone in hospital. Only the Prednisone provided some small relief. If not better, then come and see them in 4 weeks for a spinal tap.

In the meantime, a friend of a friend got me in with the top Neurologist in Colorado within days. They ran a few additional tests and determined that my Vitamin B6 was 400% high. Did additional research anywhere I could find info as they told me to remove certain B-6 rich foods from diet to correct it but those foods were not in my diet to start with. Had to be another reason.

Eventually came across a study that was tied to negative aspects of having MTHFR genes activate. Those study results focused on the issues being inability to process synthetic vitamins and minerals, inability to absorb magnesium, low testosterone, issues with sperm, DNA turning on and off, gall bladder quitting and requiring removal (in 2005). It was like: check, check, check as issues I have had all my life. I drank a small 8 oz Red Bull every morning (highest synthetic B-6 product on the FDA tested market today) for 8 years. Have grounded my teeth to nubs (signs of low magnesium), was on testosterone replacement shots for 5 years a number of years ago due to testosterone being in double digits and still was lucky to get it to 100 so in retrospect was misdiagnosed. It took my wife and I, 6.5 years to get pregnant and we needed IUI to do it AFTER I changed my diet and what I am describing below. 3 natural conception miscarriages between our two lovely kids and IUI allowed us to have the second. Thankfully our kids have been extremely healthy.

Actual medical DNA testing (NOT 23 and me stuff) showed I have both MTHFR genes activated. That explained a lot as described above.

As we did not know if this was still a virus after ER, a good friend suggested I totally change my diet to starve the virus, so no gluten, no dairy, no soy, no corn, no eggs, no lectins, no refined sugars, all organic fruits/vegetables, USDA organic meats, poultries, pork or wild caught proteins like fish, seafood, etc. Basically, an extremely clean diet. It was hard but took 8 weeks and then all mental and physical fatigue lifted. Dropped 35 lbs from 212 to 177 lbs. My body response reactions were the best they have been since I played International Competitive Hockey 27 years ago. BUT I was still in tremendous pain and not sleeping. I kept the diet and am still on it today.

After those 8 weeks on diet, we rechecked my Vitamin B6 and it was 75% mark inside of normal. Fixed that part. Since still had the neuropathy issues, they ordered a spinal tap and nerve conductivity and EMG study to confirm if this was MS or not. I passed the EMG / nerve conductivity studies with flying colors (almost back to professional athlete responses) but Spinal Tap revealed CSF ratios to serum way, way off and CSF proteins 350% high, CSF Albumin 300% high and CSF IGG levels 250% high.

Results sent me to UCHealth Anschutz Center MS and Rare Diseases hospital here in Colorado. There every test under the sun was run for blood, stools, etc., etc. They checked for MS, they checked for Lupus, GBS, CIDP, Lyme, this and that. Eshopolohy panels to Mayo. They tested everything 8 ways from Sunday as I must have given 120 vitals of blood over time. Rechecked the Spinal Tap results with a second test and it was worse than the first. Proteins were now 450% high so getting worse. However still no O-Bands counts for MS but the results showed chronic systemic inflammation in my CNS but not my blood serum. This was not MS or Lupus or anything like that. Something was causing major inflammation in my body. They determined it had to be autoimmune. Presence of Albumin, levels in my CSF, etc. in my CSF showed moderate to serious breakdown of the blood brain barrier.

During this time, I was not sleeping, total insomnia with maybe 2 hours a sleep a night. Shoulders hurt so bad I had to sleep in a chair in my daughters’ room at night as I could not lay on my sides. I was getting migraines but only the parental region of my brain and only after eating certain foods. So put me on lowest dose of Ambien and was then sleeping at least 7 hours a night. I still need it every night to sleep but still the lowest dosage. I am only on the Flexeril and Ambien for medications.

I had to exercise even just walking. I was also pushing myself to walk and lightly jog/hike as when we thought it was MS, I had to get moving to help combat it. I pushed myself to literally tears and crying while doing it because it hurt so much but I was not going to let whatever this is beat me. The first mile almost killed me as my legs and arms felt so, so heavy and disconnected from my body. I eventually worked up to 5-7 mile hikes each day behind the house. Mind you this is all happening as I started a new engineering business ramping up to 15+ employees, tons of stress along with little kids in the house with my wife. It was just stressful times.

Anyway, being autoimmune, they checked for Celiac. Blood test showed nothing, Endoscope biopsies showed nothing as I had not eaten any Gluten for 6 months. However upper intestine endoscope visuals showed all my villa were severely inflamed and basically passing undigested food through to my lower intestine. Sure, sign of Celiac. I had loose stools for years after the removal of my Gall Bladder. These were painful and sometimes had yellow foamy diarrhea. It was horrible. I had major issues after dairy as well. Migraines with soy in diet. After the change in diet, haven't had bowel issues since the diet change.

So the UC Health Anshutz MS doctors, thought maybe this was Small Fiber Polyneuropathy disease since it was not CIDP as that was ruled out even in light of the horrific spinal taps. They tested and my IGM versus TS-HDS Binding Antibodies were at 27,000. Extremely high. They did the biopsies and sent them to Corinthian Labs. My fibers were around 300% low on foot, and ankle but barely normal on hip. I was diagnosed with SPFN disease.

Problem is there is really no cure. Great positive for disease but no Bonafede treatments. Only potentials were IVIG, IV Methyl Prednisolone or Plasma-parenthesis. We tried to get IVIG but insurance shot it down so we tried IV cortico-steroids and insurance approved them.

I am very, very, very lucky in that my MS and Rare Disease doctors along with the Neuromuscular doctors along with Neurologists along with Brain and Spine docs across the country convened on a conference call together and they came up with a theory which has at least proven itself thus far. They also separately convened with some of the SFPN docs like Pasternak and others who confirmed that there were no CSF results for the people with SFPN so no direct connections.

Theory was that my Celiac was creating a situation where undigested food was pushing into the lower intestines, there it would leaky gut the synthetic Vitamins and Minerals into my blood along with the protein enzymes from the Gluten, Cows Milk and Soy which went directly to the brain. MTHFR played a major role in this aspect for the perfect storm. Here my bodies reaction was to overproduce the IGM vs TS-HDS Binding Antibodies to all of this. They then believe it bound to these harmful (to me) proteins in my blood to get across the blood brain barrier to be trapped in my CSF in my CNS. I know doctors that say this is not possible but in how I feel now, this theory has proven itself out. I had picked up the first few dominoes of this mess in no more synthetic vitamins and minerals so all raw plant based supplements and food into my body. I removed the gluten and cow's milk and soy so my GI could heal (which they said count take 2 to 3 years as bad as the physical damage was) and I was now sleeping (REM sleep to allow the body to repair itself) and getting some exercise and destressing. BUT I was still having bad neuropathy pain in arms, legs, neck and lower face at that time. It was now on both sides not just the left side.

Again the theory they came up with was if we could get the inflammation under control, maybe the body would realize it does not need to overproduce these harmful antibodies anymore in light of not having the diet I had before. So we embarked on IV Methyl Prednisolone to reduce inflammation, immune system and auto-immune response. It was a bit hard in the final cycles but it really did the trick. We did 5 cycles of 5 consecutive days of 1,000 mg of IV-Solu-Medrol. One week cycle then 2 to 3 weeks off (cold turkey no taper), then another cycle. Took 4 months but by the end, 90% of all neuropathy was removed. They retested me 1 month after the last cycle and IGM vs TS-HDS Binding Antibodies were lowered to 8,000 and in upper normal range. For the most part the neuropathy has stayed away but does flare up every now and then. It is tied to if I accidentally ingest Gluten, Dairy or Soy, or really anything I do that ads to inflammation. If I accidentally ingest , it comes on within 1/2 hr of ingestion and I lose feeling in my left foot completely and arms, legs and lower jaw do the same as before with neuropathy but not as intense. It goes away completely after a couple of days. We are going to retest Antibodies near XMAS to see if they are still low or was that retest reading just a result of the IV Steroids' slowing down the immune and auto-immune response. Either way, I am in a much, much better place now then where I was.

After neuropathy was under control, I started to feel pain in my neck and MRIs show moderate to serious stenosis in my C5/C6. I started to use a Saunders Cervical traction device I bought off of EBAY and after a few months, the pain in my neck has improved dramatically. My Pelvic floor spasms and inner bowels spasms, have subsided again 90%. I have also started a plant based USDA Organic pre-biotic and probiotic cycle, raw plant based digestive enzymes, magnesium powder at night, a few supplements to fill in gaps from my raw plant based multi-vitamin. Fish oils, etc.

While not 100%, it is the best overall I have felt in 25 years. I feel like I am healing more and more each week despite the odd flares that set me back temporarily. Now at times I get spasms in my pecs, calves, stomach which are not in the muscle, not a bone issue and not on surface. They cause lumps to appear but then after exercising go away. Almost like Fascia spasms as crazy as that sounds. Going to try some fascia release of Rolfing to see if it helps and some AIS stretching as I am sure some nerves have been shrunk while others elongated as posture, etc. was distorted over time.

In the end, I will say this, after 1 year, my blood work drastically changed. I fought aspects my whole life from the levels a year ago. High cholesterol, 250+. It has dropped to 161. Triglycerides were 311, dropped to 120, LDL, from 165 to 109, HDL unfortunately dropped from 38 to 33 (need to exercise more and lose a few more lbs) SGPT from 110 to 33, Testosterone from 110 up to 301 (highest it has ever tested at). My body is healing.

Sorry for the long write up but if this helps one person, then it is worth it. I do believe it started with the autoimmune Celiac as the main factor that put me where I was at. From there it dominoed and dominoed. I am healing now and will forever be changed. It is all about controlling and reducing inflammation now. I am even considering removing meats and pork and poultry as I just feel better eating Organic Plant based. Almost a vegan diet but I not about the cause or political stances. I just feel better eating this way.
I will let you all know how the rest of the tests go by year end. I my still have to do some more IV Methyl Prednisolone but maybe that is once a quarter now. Either way, it is working. In my case, it was everything and not just the drug itself. Goes without saying I drink a ton of water to filter all this through the system too.

Hope it helps. I am considering writing a book if it helps people. It is pretty miraculous the entire experience and feel so blessed it has appeared to come through okay on the other end of this journey.
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Old Yesterday, 10:43 PM   #14
Katkeyper
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Default Feedback on Methyl Predinosone series

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Originally Posted by britt9138 View Post
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.
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