My legs getting weaker and weaker

Were you diagnosed with SFN? I ask because I thought that is what I had (similar symptoms) but the neurologist said it wasn’t. After a few months, the burning that had been there for several years has almost faded away. No more tingling. And, diminishing numbness. I never felt pain, such as stabbing. I have no explanation. I did improve my blood sugar control, but just a little. I also had extremely weak legs one time. I got no diagnosis. It lasted about a year, before it went away.

@nukhan
I had burning/tingling/pins and needles start in my feet back in 2017. I also had some numbness in my left calf. My list of weird symptoms was long and I saw many specialists. I did see a neurologist who did a skin punch biopsy (took sample from thigh and calf) which confirmed severe small fiber nerve damage. It was considered to be idiopathic (no known cause). I had upper and lower EMGs and nerve conduction studies. You may need those tests to check large nerve fiber function. My central nervous system and peripheral nervous system has worsened since then and I now have weakness, numbness, etc. in arms, hands, legs and feet. I am going to ask for updated testing. You want to try to stop the progression of nerve damage because in most cases it is irreversible.

My EMG was normal. I asked about small fiber neuropathy and he said I didn’t have it. So, I guess I would need a second opinion. I have worked for better control of type I diabetes and that is going well.

What treatments are available to stop progression? For those with diabetes, it’s generally keeping blood sugars in good control.

Also, about 18 years ago,I had severe weak, sore, stiff leg muscles. I could barely walk. Tests were not helpful. After about a year, it went away. So..l.idk what it was.

@celia16
You may want to consider researching and taking Alpha Lipoic Acid and Acetyl L Carnitine supplements for neuropathy symptoms and nerve health. I started taking them when I learned I had small fiber neuropathy and the burning and pins/needles in my feet improved. I am not diagnosed with diabetes but my mother had type 2 diabetes and I am sensitive to eating too much sugar.

I was diagnosed with Idiopathic SFN 15 years ago, Civilian Doctors were of no help, wasted 12 years on Gabapentin which only made me sleep most of my life away. Forced into retirement I qualified for VA and the Veterans Hospital has been a God send. I can now afford Pregablin that helps so much more than Gabapentin did, I have been using Alpha Lipoic Acid and it adds to relieving sensations. I do suggest trying it. Every Body is different so listen to your body and don't discount prayer it has helped me more than anyone. God Bless

It was my understanding that the meds help with symptoms, but not much else. That’s my understanding. But, I don’t really have any pain. The burning is slight and hardly ever surfaces. About 98% resolved. I never had any pain. So, I’m not feeling the need for meds, unless this changes. I do still have slight numbness, which is gradually improving. But, I’m open to anything that could he helpful. I’ll explore the meds suggested,

Hi.

How many times do you take Pregablin a day, and what are your dosages? I'm fairly new to it, take it twice a day, and take 75mg each time. And how long did it take before you noticed positive results?

My balance on the right side has killed the feeling from falling down 2 years ago. My right-side is my strength and now is the weakness. 2 weeks ago, my Dr. A. changed the pain of both legs are gone when he ‘fixed’ it that took 4-6 hrs from this hospital. 12 years ago, he took care of my head-brain inside my TBI accident.

Today, the pain ended, but still my bad-balance is still here, but, thankfully, I have to exercise - a totally diff exercise, professionally - help my right leg and here’s a little part of what I’m doing about my bone:

Sounalogic - a 30 minute every day. Little or no feeling, but that feeling feels pain but a different feeling. According this, overtime, part of my bone (the bottom of my back). Remember Dr. A. “fixed” the bottom back from my falling down. This is just a piece of what I need and can

I was initially seen by a neurologist in Malaysia in August 2017 who ordered a lumber MRI; on the basis of which he was of the view that the issue of my feet was triggered by stenosis at my L4, L5 and S1 levels.

I subsequently went to USA where an orthopaedic clinic in Colorodo gave me PRP injections treatment for my lumber and cervical on 17 May 2018. However when I consulted Mayo Clinic a month later i.e in June 2018, they didn't think that the pain and numbness etc in my feet was the result of back issues. While there I underwent all kind of tests including CT and MRI; and their final diagnoses were that I had idiopathic small fiber neuropathy.

Soon after these diagnosis i.e small fiber neuropathy, I have had a lot of supplements for extended periods of time with no relief such as:

R Ala, Chelated Magnesium, B1 Thiamine, B2 Riboflavin, B3 Niacin,Biotin, Organic Flaxseed, hemp seed oil, Methylfolate, Methylcobalamin, Acetal L Carnitine, K2 as MK7, D3, B-complex Brumalain, Lion's mane mushroom supplement, some Vitamin B12 shots, low dose neltraxone (LDN) and all kind of therapies and remedies (but excluding pain medication which I have avoided for fear of side effects), with no positive outcome such as countless sessions of physiotherapy, nerve conduction studies, Red light and cupping therapy, having used all kind of creams, balms, lotions and oils including CBD oil, Castor oil and frankincense and myrrh oil, soaking feet in cold and lukewarm water with Epsom salt, major diet changes (eliminating sugar, wheat, dairy products (including milk), processed foods, bakery items and vegetables seeds oils) with Intermittent fasting for extended period of times with no relief.

Despite all these steps, there has been progressive deterioration in my symptoms.

When I think back now I have the feeling that antibiotics (ciproflacacin) may have caused the small fiber neuropathy to begin with because my feet started feeling heavy the day I took the first dose of cipro for a simple UTI issue back in 2017. But at that time I didn't know/realise that cipro could be so harmful.

Since 2017 I have consulted a number of neurologists and reputable hospitals and have had quite a few CT scans and MRI.

My recent MRI report from the American Hospital in Dubai indicates that there are some features which raise the possibility of Chronic Arachnoiditis. The irony is that despite this reflection in the MRI report the Spine Specialist and Neurosurgeon who ordered this MRI didn't mention anything about Arachnoiditis to me. It is only me who saw the word chronic Arachnoiditis in the MRI report followed by my own Google and YouTube research that brought me to the conclusion how rare and dangerous this particular disease is so much so that even doctors and Radiologists don't know what it is.

This brings me to the conclusion that despite my best efforts I have not been able to have a definitive diagnosis thus far. I have trouble sleeping, remains half-awaken the whole night, trying to change positions. Mobility has become a huge issue. This disease has not only forced me to leave a very attractive job but has severely impacted my quality of life.

It’s interesting, but I took one dose of the antibiotic Macrobid before starting this incredibly horrific metallic taste (now bitter) in my mouth, which continues since Sept last year. The foot numbness and tingling began soon after. But, so did covid. So, the symptoms are attributed to post covid syndrome. But…..We can’t be certain.

I sure hope you get some relief. Physical therapy and talk therapy have been the most helpful for me.