Neuropathy From Unknown Causes
I was diagnosed with “Neuropathy from unknown causes” back in 2005. It started in my feet (coldness, loss of feeling, cramps, stiffness). Then, over the years the numbness worked its way up to my calves, with severe cramps, then thighs and even my biceps got involved (squeeze the bicep, get a cramp). Sometimes I would have numbness in the hands and face. I started having a gait issue occasionally with a foot drop. Overall my legs got extremely stiff. Muscles felt like piano wires and no amount of stretching helped. I also had acid reflux issues on and off and a pain in the low left abdomen which often expressed out the back at the lower left hip. I used to love lifting weights but stopped as instead of soreness then recovery with more strength, lifting seemed to cause soreness that just increased no matter how long I spaced recovery between sessions. Doctors said they eliminated serious possibilities and whatever it was wouldn’t kill me. They noticed some brain lesions, but joked – well who doesn’t have those :-). Still around 14 years later so they were right.
Over the last couple of years, I started to have frequent stumbles which progressed to several serious falls last year. Luckily, I avoided serious injury. My diagnosis hasn’t been changed nor looked at since 2005, but to be fair, when rushing through the last appointment with my doctor I forget to mention the stumbling and falling as a new symptom. There seems to be a genetic factor at play as my father suffered from stiff legs and a walking issue and neuropathy. Both brothers are having similar issues and an Aunt had Parkinson’s Disease.
I ran across your work with thiamine and have started high dose of the TTFD form of thiamine (allithiamine and lipothiamine) about 100 mg 3x a day. I saw a quick resolution of the stumbling and falling issue, my balance has been fantastic, a reduction in muscle pain throughout my body, acid reflux vanished, and a big improvement in cramping in thighs and calves. I also have tinnitus and haven’t seen much change there, it comes and goes.
My brother has also started. He had water on the heart after having chemotherapy, low energy, constant diarrhea, bloating, weight gain, and the neuropathy in the legs. He is doing very well with only 50 mg a day.
We both noticed after 3-4 days, a relaxation of chronic muscle spasms and increased flexibility, especially in the shoulders. My brother says he could raise either arm and touch the middle of his back for the first time in over 40 years. My brother is also losing body fat around the belly quickly, he is overweight, while my weight has been steady instead of the usual battle to stop gaining weight. I also feel far stronger.
Recently, I got busy and missed some doses and the muscle cramping returned quickly and getting back to 100 mg 3X a day (along with a B-complex) cleared things up quickly. I felt things were still very good but not quite as effective, so I recently up’ed to 100 mg, 100 mg, 150 mg, 150 mg, for a total of 500 mg as I also wanted to see if I could tackle the tinnitus. In the mornings, I was waking up with my feet feeling a bit tight and after taking my morning dose I could quickly feel the feet unwinding. I noticed that the higher dose just before bedtime seemed more effective, and waking without the tight feeling in the feet.
As for questions – I am 6’4″, 240 lbs, and 64 years old. My dosage is 2.8 mg/kg. My remaining issues are tinnitus and some eye issues (vitreous detachment, lots of floaters and flashes in both eyes). The only things I might attribute as side effects – I get hungry after my morning dose – as if I’m experiencing low blood sugar but not the other doses. I’m sometimes twitchy in the mornings (maybe a case for that higher dose before bedtime). I sometimes feel a bit spacey/hard to focus shortly after a dose which passes, and these occasional stabbing/shooting pains sometimes in nerves that haven’t bothered me before – I think this more to do with the relaxing muscles and nerves getting pinched due to my new freedom of movement and adjusting to that. That seems to only happen from sitting around and hold a posture too long then moving not when I am working on projects.
The Road to Recovery: Thiamine, Biotin, and Magnesium
The above was taken from a comment I made on the post “Beriberi is alive and well in America” in April. I had been led to the post doing searches on beriberi as I was struck how similar my symptoms were to the disease. Dr Lonsdale proposed thiamine+biotin+magnesium. I tried the thiamine first in the different forms and the lipothiamine worked by far the best. It mostly reduced the electric shocks in the feet/legs. I accidentally took 50 mg biotin thinking I was taking 5 mg and it had a near immediate and profound effect throughout my body erasing my stiffness/numbness/tingling and giving me great relief in my tightly cramped feet. It also brought back normal sensation. One effect was a powerful feeling of pulsation (blood flow) at the base of the skull after taking the biotin. I had been experiencing a lot of falls and stumbling as well and that completely stopped once I started the biotin.
During my experimentation phase, I was looking at the doses given for Biotin Dependent Basal Ganglia Disease and decided to try about 800 mg of biotin. I quickly got a severe nausea and started throwing up copious amounts of green bile, picture “The Exorcist”. In hindsight I wonder if that was a paradox reaction. So I dialed that back to about 10 mg biotin + 50 mg thiamine + occasional magnesium and was doing quite well. Not all my symptoms were gone but all in all manageable. I was also a bit bad on self – care as I would go keto/low carb, no alcohol for winter/spring and drop 30 lbs but back to an anything goes with high carbs, occasional alcohol for summer and fall with a worsening of symptoms but tolerable along with rapid weight gain.
A Switch to Conventional Medicine: Prednisone
This fall I decided that once and for all I was going to get a good health checkup and also a mainstream diagnosis and as part of that dropped the thiamine/biotin so to not affect some scheduled routine blood tests. I immediately had a big flareup in pain and stiffness which got me first sent to Rheumatology where they said they didn’t understand why I was there, then to a physiatrist who found some spinal stenosis and prescribed a course of prednisone. The prednisone worked like magic. All my symptoms vanished except for my calves and feet where the pain and tightness was gone but the spasms and electric feelings were very high. I had the opposite of expected side effects on the prednisone. I didn’t feel hunger, drank a lot of water and lost weight, no bloating, minor increase in BP. I had also been experiencing on/off chills with a low body temperature to the point I would wear a winter coat indoors at times. The prednisone vanished this, lighting up an internal furnace of heat and energy. I felt great, my motivation increased, and I got a lot of projects done, whereas before I was dragging. Even my tinnitus was greatly reduced and even vanished at times. My heart rate which was around 60 popped up to 75. Unfortunately, I broke my sleep tracker which pre-prednisone told me I was dropping into low 50’s and even high 40’s heart-rate while sleeping. The stomach pain, head pain, stiffness, numbness all gone!
Then came the taper. I started to feel the cold again as I tapered off and on and the tinnitus came roaring back. I started to feel like I had a pain sensitivity dial. My pain was extreme in the mornings and evenings, reduced during the day. My average body temp dropped from 98.4 to 96.8. Now the numbness and tingling wasn’t just in the legs, hands and feet but everywhere. Spasms everywhere. I felt I was in a real crisis. My primary referred me to an endocrinologist but it was a 2.5 month wait.
Possible Multiple Sclerosis
With the prednisone taper and return of my symptoms, I convinced my doctor to give me another MRI of the head, as the last one was 2005. That found 10 lesions that had progressed slightly but he didn’t feel that accounted for my symptoms. I now have a neurologist scheduled in a month after communicating my list of symptoms after the prednisone taper.
HISTORY: Loss of feeling in feet and pain and numbness in hands, face, and feet. Occasional tremors. Polyneuropathy on EMG.
FINDINGS: There are a few small scattered foci of prolonged T2 relaxation in the central and subcortical white matter of the frontal lobes. A few similar lesions are seen in the temporal lobes. These are nonspecific as to etiology given their distribution and appearance. None of them shows abnormal Gadolinium enhancement. The rest of the brain appears normal. The arteries at the base of the brain and the dural venous sinuses are patent and the facial structures appear normal.
CONCLUSION: Nonspecific scattered white matter lesions in the frontal and temporal lobes. The differential diagnosis includes demyelination from multiple sclerosis, sequelae of vascular headaches, early small vessel ischemic disease, and vasculitis.
My latest findings showed some progress of the lesions and they went from a few in two regions (6-7 I assume) to 10.
HISTORY: Neuro deficit(s), subacute. Paresthesia.
FINDINGS: Diffusion-weighted images are normal. There is no evidence for intracranial hemorrhage or acute infarct. There are some scattered signal hyperintensities in the supratentorial white matter. These number approximately 10 and are not associated with any mass effect or enhancement. These have slightly progressed since the prior exam. Brain parenchyma is otherwise normal. Ventricles and subarachnoid spaces are within normal limits. Vascular structures are patent at the skull base. Postcontrast images do not show any abnormal areas of enhancement or any focal mass lesions.
- Several small scattered white matter lesions without enhancement or mass effect. These have slightly progressed since 2005. They are nonspecific and could be due to gliosis, chronic demyelination, or chronic ischemic change. They can occasionally also be seen in patients with headaches.
- No evidence for intracranial hemorrhage, acute infarct, or any focal mass lesions.
My doctor still didn’t think the lesions accounted for all my symptoms and recommended waiting for the endocrinology. Both the 2005 and 2019 reports list multiple sclerosis as a possible differential diagnosis along with a couple of other things but nothing further was done. In 2005, the diagnosis was neuropathy of unknown causes.
Back to Biotin, Thiamine, and Magnesium
The brain lesions triggered some research and I discovered that high doses of biotin are being studied and in France prescribed for MS. This was enough to sink in. Being in extreme pain and figuring it is some time before any new testing, I went back to the thiamine+biotin+magnesium combination.
The results were dramatic. I immediately felt my pain sensitivity reduce to normal, so a bit of back pain was a twinge, not like something stabbing into my soul and the size of a beach ball. Stiffness, numbness, and tingling vanished in most of my body with just a bit of numbness in mouth, lips, and tongue. I could now pronounce some words again that I couldn’t just days before. I still felt the cold, especially in my feet but this is lessening every day and my average body temp is now 98.2. My heart rate is down again, but mostly low 60’s. I still cannot stand on one leg with my eyes closed but can manage with two and not sway much or start to keel over.
This time I decided that given MS patients were benefiting and tolerating 300 mg of biotin to give it a try. I increased from 50 mg to 300 over a few days. I had a touch of nausea, very minor, and no throwing up this time. Every day my symptoms are getting better. The higher dose of biotin has been more effective on the tinnitus and it sometimes is nearly gone. Currently, I am using 300 mg biotin, 250mg lipothiamine, and 350 mg magnesium and now feel back to my “normal”. My toes still curl and jump a bit, my feet get tight ranging from 25% normal to 85% normal. If I touch my thigh my toes curl. My mouth, lips, tongue are a bit numb. Prior though, I was also having pain in the left side of my head, in the jaw, “TMJ pain”, as well as pain Northeast of top of the ear, behind and below the ear going down the neck, and my left eye hurt a lot whenever I moved it. That is all gone now with the thiamine, biotin and magnesium combo, just as it was with the prednisone.
I suspect that the prednisone was shutting down all the inflammation, and allowing me to feel great and energetic but without the biotin and thiamine and not eating much I was burning the candle at both ends and paid a terrible price once I tapered.
I have done some genetic research but it all dead ended. Any research related to thiamine deficiency disorder or biotin thiamine responsive basal ganglia disease doesn’t list any of my SNP’s except for a couple that have been studied and listed in clinvar database as benign and 23andme dna data does not have many of the SNP’s for BTBGD. If I want to pursue that route I’ll have pay for special testing.
My Promethease report (which is free now everyone!) does list 29 mutations that increase multiple sclerosis risk but I suspect that is a general container for a lot of subtypes of neurological disorder. It is possible I do have MS and it is overtaxing my ability to absorb and deliver thiamine to the brain. I have a couple of homozygous mutations on SLC19a3 (Thiamine transporter gene) but there is no data on them or any of my heterozygous mutations on SLC19a2 or SLC19a3.
At this point I’m doing well and plan on continuing with the thiamine+biotin+magnesium at the current level and I am debating if it is worth pushing on with the specialists. I also plan on going on the keto/low carb/no alcohol diet permanently. I’ve learned my lesson.
I want to thank again Dr. Lonsdale, Dr. Marrs, and this site for the information they provide. I cannot imagine where I’d be at this point without the knowledge I’ve gained here.
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