Episodic muscle weakness diagnosis?

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Hello everyone

I am from the UK and searching for a Neurologist to try and diagnose my issues, meanwhile I thought i'd write here to see if anyone has been had similar issues and has been diagnosed?

My issues first started when I was approximately 26 or 27 years old, 5-6 years ago. I am male, 6'4 and roughly 210lbs 15-20% BMI at the time.

Throughout 2014-2018ish I regularly lifted weights at the gym otherwise quite a sedentary lifestyle working on a computer from home. Since 2018ish I lost interest in the gym and now have a very sedentary lifestyle.

  • Symptoms

I will get a sudden onset of muscle weakness, often starting in my forearms or thigh/quad muscles, and it will spread to my hands, calf muscles, ankles, feet, shins, chest, arms. Years on I have found that some episodes will only affect certain muscles for example my calf muscles or weaken my ankles or my thighs/quads and nothing else. Often it will be multiple areas affected. It feels quite random at times.

The weakness episodes can last anywhere from 1 hour to multiple days. I can go months without any issue and then it will happen, sometimes one time only and then months of normalcy until it happens again.

Sometimes it'll happen and then i'll be fine for a couple days, then another episodes happens, etc.

During only extremely bad episodes (which have happened maybe 3-4 times over the past 6 years) it will affect my abdominal muscles.

The range of weakness during episodes is always enough to impact daily life, whether it means I walk with a hobble as my ankles/shins are weak and I cannot pick my feet up properly or in the worst cases I have fallen down due to weakened muscles and could not get myself up from the ground again, in these cases my abdominal muscles were affected and I had almost zero strength in my arm and leg muscles.

The only pain I have is from if I were to try and over-stress my muscles while they are not working properly.

I am not paralysed, just muscle weakness as if my muscles were overworked until they get to a point of failure to even activate.

For anyone that has lifted weights, it's like when you do an extremely hard leg day after not doing any for a while - when you go to climb the stairs your legs give out. It's sort of like that.

There's also no pins & needles feeling.

  • Tests

One of the worst episodes happened in 2017 where I had to go to A&E as I was unable to get myself off the ground.

I had a bunch of tests done and these are the blood results that were near to or outside of normal ranges:

Potassium 2.6 mmol/L, range 3.5-5.3

Creatine Kinase 914 U/L, range 40-320 . I do not recall if I went to the gym the day previous.

Lymphocytes 1.4 x10^9/L, range 1.5-4.0

Phosphate 0.82 mmol/L, range 0.80-1.50

PO² 9.1 kPa, range 11-14

I was given an IV of potassium and after being kept overnight I made a full recovery and was discharged in the morning.

Further tests that came back as normal:

MRI scan of spine lumbar, Dr noted 'possible neuropathy, exclude of cauda equina syndrome'

ECG normal

Ultrasound of liver, both kidneys, gallbladder, abdominal aorta and spleen came back normal

HIV negative

I have had more tests for example electro muscle stimulation (normal results), a genetic disease test and more but I am waiting on a copy of that hospital paperwork before I can post the information.

  • Things I have tried

It would seem like potassium is the answer here but I have since tried supplementing by taking LoSalt (same as NoSalt) which contains high levels of potassium. I thought this worked but it appears I was simply going through a 'no episode phase' as eventually I had episodes while supplementing this.

I have also tried taking multi-vitamins, L-Carnitine, Iron, Magnesium, Creatine to no affect.

  • Things to note

Since 2-3 years before the first episode I had been supplementing testosterone (my natural levels are low). When I was discharged from A&E they believed testosterone may have been causing low electrolytes/potassium which in-turn may have caused the muscle weakness.

After this, I had stopped supplementing testosterone for a 1.5-2 year period and the episodes continued to happen. I have since went back on a TRT prescription (125mg/week). The weakness episodes continue to happen regardless if I am on testosterone.

The only other medication I am now on is Levothyroxine which was prescribed roughly 2019 or 2020.

There have been a few times I have had slight weakness in my arms and/or legs and after a 10-15 minute hot shower, I have recovered. I have tried this many times since - I don't believe it's a coincidence but rather it only works sometimes.

I have tried restricting food types to see if it is diet related. While dieting to lose weight I did Intermittent fasting (1 or 2 meals per day within a 6 hour eating window). During this 3-4 month period of eating <1,500 calories and the same food with little variation (i'm a creature of habit) & little to no sugar or junkfood, I had no or few episodes but it may have just been a coincidence.

I think that's about everything I can think of for now.

I do wonder for anyone in the UK, is it possible to pay for private consultations and then have the tests covered by the NHS?

Thank you for reading.

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1 Reply

  • Edited

    @purple44, Hi, I just read your post and it reminded me very much of my struggles to get help with my muscle problems. To speed things up, I made a private appointment with a neurologist specializing in muscle disorders who then referred me to the Muscle Disorder Unit at the Salford Royal Hospital.

    I went through much the same as you, countless blood test, MRI, needle myography, nerve conductance tests. If you have any questions please feel free to ask.

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