Weird symptoms, clueless doctors

[Dominik]

Hello from the centre of Europe. I am interested in your opinion regarding possible MND. English is not my native language so I hope that the post would be understandable.

I am 33 year old male who was completely healthy until mono infection in 2021 - that year was quite hard on my body, except the infection I was given two shots of Covid19 vaccine and one shot of tetanus vaccination. After a while I started to have issues with my vision - subtle vision shaking. Eye and complete neuro exam including brain and spine MRI, spinal tap and blood tests showed nothing specific. After a year I had a sudden episode of paresthesia in all four limbs which went away after two weeks - blood tests showed slightly elevated serum CK level. Few months later my respiratory muscles weakened a little bit - confirmed by tests.

End of 2023 I had a very weird episode of flu-like symptoms but without any trace of infection. This was followed by a weakness in my right calf with a visible difference in muscle volume - only one muscle (cca 1/2 volume compared to the left leg calf). Month later I started to have whole body twitches (everywhere) + general weakness + shrinking of left shoulder and muscle between thumb and index finger + constant right eyelid twitching + I lost strenght in my legs and my left hand. When trying to exercise the affected muscles does respond with frequent twitching afterwards. Rehab doc said potential MND after evaluating my strenght, partial atrophy and hyperreflexia.

Next neuro exam + advanced EMG showed damaged ulnar nerve in the elbow section + chronic denervation/reinervation of the muscle between thumb and index finger, smaller calf and shoulder did not show any abnormalities (single fiber test) - but I do not have any sensory problems even when my ulnar nerve damage is classified as "medium severity". Doc said that he cannot see any signs of motor neuron circuit pathology but he also cannot explain my problems. My body slowly deteriorates day by day including breathing capacity but nobody knows what is going on. Does somebody have a similar experience? Thank you in advance

 

[lgelb]

If your breathing is deteriorating to a significant extent, I would expect you to be offered an xPAP machine. If you could post those test results and the "advanced EMG," with your details concealed, that would be more helpful. But ulnar nerve damage is extremely common and can usually be addressed with exercises and avoiding putting pressure on those nerves.

The fact that you do not show a sensory deficit there does not mean that there is anything sinister about the motor deficit. However, taken all together, it would seem that systemic rather than neurologic disease might be worth exploring further with a good internist, including rheumatologic disorders and postviral syndromes even if you didn't test positive for anything but mono.

If your calf is smaller and you feel it has lost strength but there was no motor neuron damage seen on the EMG, that is extremely reassuring as regards MND.

 

[Dominik]

Thank you for your response. My breathing is till sufficient for regular activities, physical exercise is a different story. My EMG results are delivered in Czech language without any charts, just values. It is really difficult to translate it to English. But here is a summary of calf muscle needle EMG: denervation not detected, fasciculations 0, fibrillations 0, sporadic occurence of low MUP but all MUPs are of normal shape and duration, higher % of polyphasic MUAPS. The lowest aplitude value for that muscle is 223 the highest is 1585. Average MUPs values: duration 12.7, amplitude 720, turns 3.5, phases 2.1, rise time 1.1, spike duration 4.7. Other muscles tested by needle EMG are ok except detection of higher % of polyphasic MUAPS.

Picture of calf muscle values:

 

[Dominik]

Hello again, I am still waiting for immunologic blood tests. But I want to share something that seems to a little bit improve my symptoms, mainly fasciculations. Few weeks ago I started a strict diet out of desperation. I always loved a meat based diet but I switched to gluten-free vegan diet with additions like curcumin - one of the last gen with improved bioavailability, sublingual fisetin, sublingual quercetin, sublingual pterostilbene, fenugreek, vitamin K2, vitamin D3, Vitamin C, lion's mane, taurine, ashwagandha, acetyl l-carnitine, cranberry extract capsules and alpha lipoic acid. I also drink decaf green tea (CO2 decaf process), greek mountain tea and extra virgin olive oil every day. Because it is quite a lot of supplementation a started to regularly visit a lab for blood tests related to liver and kidney condition - all values still ok. I tried to find supplements that are tested by studies and confirmed to cross a blood-brain barrier (some tests done on mice only). Just my two cents...

 

[Nikki J]

Since you don’t have a diagnosis this comment is for readers who do. Curcumin, vitamin d3 and vitamin c have all been shown to have no benefit in ALS. Acetyl l carnitine has some preliminary positive results. Not sure about the others. PALS. need to be careful in choosing supplements as they may cause gi issues and will require energy for the body to metabolize them

 

[lgelb]

And some like quercetin, lion's mane, ashwagandha may damage the kidneys and/or liver over time. You might see the damage in tests afterward, but it might be permanent. This massive list of supplements also could impede the process of diagnosing and treating anything that you actually have.

IMHO, "fixing" fasciculations is simply not worth the risk of organ damage, which would make you feel so much worse for so much longer than you do now.

 

[Dominik]

Thank you. I will provide an update after all scheduled tests. Right now doctors still do not know what causes my symptoms and because of constant progress which started to affect my balance and movement coordination I was told that Parkinson's or Parkinson's plus is also possible. I have already received Levodopa just to see if it makes a difference but I refused to take it until whole diagnosis process is finished. In general doctors are very hesitant to give my symptoms a name mainly because of my age - 33 years is considered "too young" for such diagnosis.

 

[ShiftKicker]

I question refusing a known method of assessing for Parkinson's. That doesn't make sense. People's response to this med during the diagnostic process provides doctors information and direction. You may be doing yourself a disservice and delaying diagnosis.

 

[Dominik]

I want to wait for a few weeks because I will be sent to a so-called "super-specialized" clinic where the doctors tend to start whole diagnostic process from scratch and I do not want to influence the results, I am also reducing the amount of supplements I eat because of that.

 

[ShiftKicker]

Again, your doctors should be the ones guiding the diagnostic process. If the specialists at the clinic recommended the levodopa as part of the diagnostic process, then deciding not to take it will affect the process.

Please come back after you have completed your testing at the specialty clinic and let us know how it went.