2 years of neurological symptoms

[donnell11]

Over 2years of unexplained neurological symptoms

I could use some advise after a long journey


I hoped that I would never have to post here but yet here I am. Male 32. Previously in excellent health

I’ve been on quite the journey with my symptoms over the past 2ish years. Starting in Nov 21 I developed an issue with my throat where I quite hoarse and spat blood a few times. I went to the GP and he thought nothing of it. Then after a couple of months passed the twitching began in my legs along with a feeling of weakness. This is where the panic started as my grandfather had passed from MND and that was at the forefront of my mind. I had another few trips to the GP where he assured me it was nothing but eventually managed to get a referral to a neurologist. In March 22 he carried out a clinical and 4 limb EMG which all came back clean. This of course didn’t calm me down and started a lot of work on the mental side of things including checking into a mental health institution.

For the whole year of 22 my symptoms progressed to where I was continuing to have weakness in my legs along with my arms and twitches everywhere. My hands were losing coordination to where I found it very hard to text and type on a keyboard. My voice was constantly strained and swallowing never felt right.

This continued and in Feburary 23 i got another EMG and clinical with the same neuro and again all was clean. My symptoms continued to progress to where everytime my muscles were put under any bit of strain they would shake violently along with my hamstrings always cramping up. My cognitive abilities started to decline as well, my thinking, memory and concentration went out the window. I had a visit with a different Neuro in September 23 and just did a detailed clinical which again was clean and didn’t even order an EMG. I had been going to the gym but it was getting harder and harder each time I went and eventually stopped.

Which pretty much brings me up to now at a complete loss as to where to go and what to do next. My symptoms are still progressing. I am completed exhausted every day and struggle to compete a days work let alone to anything else afterwards. I avoid speaking much as it is very difficult and swallowing has become harder. The latest thing that has been happening is my right ankle locking up when put in certain positions. And then taking about 5 mins for it to straighten out.

Just posting here as I’m hoping someone could give me some inspiration as to where to look next. Thank you all!

[Red_Star]

I had many of those symptoms from vitamin B12 deficiency. Vitamin B12 is needed for the myelin sheath that protects the nerves. Something to consider.

Excerpt from “A Silent Epidemic with Serious Consequences—What You Need to Know about B12 Deficiency” by Chris Kresser, M.S.

“B12 deficiency is significantly underdiagnosed for two reasons. First, it’s not routinely tested by most physicians. Second, the low end of the laboratory reference range is too low. It is well-established in the scientific literature that people with B12 levels between 200 pg/mL and 350 pg/mL -- levels considered “normal” in the U.S. -- have clear vitamin deficiency symptoms.

In Japan and Europe, the lower limit for B12 is between 500 and 550 pg/mL. Some experts have speculated that the acceptance of higher levels as normal in Japan and the willingness to treat levels considered “normal” in the U.S. might even explain the low rates of Alzheimer’s and dementia in that country.

Experts who specialize in the diagnosis and treatment of vitamin B12 deficiency suggest treating all patients that are symptomatic and have levels less than 450 pg/mL. They also recommend treating patients who show normal B12 levels but also have elevated urinary methylmalonic acid (MMA), homocysteine, or holotranscobalamin, which are indirect but sometimes more reliable markers of a deficiency in vitamin B12.”