Unknown Neurological disorder mimics MG

Posted by stephenbaker @stephenbaker, Mar 2, 2020

Hi Folks,

This is Stephen from Vancouver, Canada. A 46 year old guy, married with 2 young children.

I had an anaphylactic reaction (tongue swelling, throat closing up) to an antibiotic in June 2018. Two months later I was at my GP office complaining of weakness in my legs. Symptoms have progressed since this time and I have now unable to work for the past 4 months with no expected return to work date. My life has been turned upside down!

I have seen numerous neurologists, had MRI’s, vials of bloodwork, genetic testing, EMG’s all not confirming any diagnosis.

Yet my symptoms mimic myasthenia gravis (MG) and continue to progress.

Before Christmas as a last resort my GP prescribed Mestinon, a first line treatment for MG, and a miracle occurred in that this really helped my symptoms. It was wonderful to be able to swallow food effortlessly and without my tongue or jaw aching from fatigue.
 
Below are my Symptoms
* Left side ptosis, blurred vision and photo -sensitivity
* Consistent Positive response to ice pack test
* Difficulty swallowing, chewing and moving tongue.
* Weakness in legs and arms (Limbs Feel heavy like lead after use of these limbs)
* Anything requiring effort induces the muscle cramping, weakness and heaviness
* Extreme fatigue++++
* Symptoms improve after rest
* Symptoms often worse in evening
* Muscles twitch at times
* neck aches and pain significantly reduced. I had attributed needing to rest my head and hold my head due to ache in my neck due to past cervical surgery. At times, my head felt too heavy. However with Mestinon these symptoms have improved dramatically
* was advised by Colleagues at work that I slurred my words. Especially apparently noticeable later in the day when tired. Some of my colleagues wondered if I was under the influence of alcohol. (I was so embarrassed to hear this)
* Very rarely when extremely tired noticed my breathing change and have to put in a little effort to draw breathe in (Been to ER twice with this)
* I noticed that my symptoms intensified increasingly after going I was in a hot tub recently
* Respond positively to myasthenia gravis medication: Mestinon

Neurologist can not explain why I respond I to Mestinon which is the first line treatment for MG.

Neurologist could not explain why I consistently respond positively to the ‘ice pack test’.
(The ice pack test is a recognized test to demonstrate that a person has a communication issue between nerves and muscles which is the basis of the disease mechanism of MG. By placing an ice pack on an effected eye with ptosis(partial closure) and seeing the ptosis reverse has a 98% accuracy diagnostically for some type of MG. I respond in a positive manner to this test 100% every time)

I am now being referred to an M.E. Clinic, yet, I don’t meet so many of the required symptoms for a M.E. Diagnosis. I don’t experience pain, sleep issues, flu symptoms, heart rate issues, dizziness, enlarged lymph nodes, sore throat, etc.

I have also been recommended to see a good psychotherapist or psychologist as well. (I was astounded by this remark).

I am no longer able to work and my life is completely different than 18 months ago. I just want to get well!! And it’s exasperating beyond belief!

I am coming to the point that I believe I need to come to the Mayo Clinic, have medical results examined and get a consultation.

I am very concerned about cost of consultation and any testing. Would anyone have any idea/ball park?

I feel that the only place that will maybe able to provide me with a diagnosis is The Mayo and maybe a chance of further treatment recommendations.

Anybody have any thoughts?

At the end of the day, any amount of money is worth a diagnosis and treatment plan!!

Can I ask what dosage that folks are on for Mestinon?

I am on 3x 60 mg, four times a day. (720 mg daily)

REPLY
@stephenbaker

At the end of the day, any amount of money is worth a diagnosis and treatment plan!!

Can I ask what dosage that folks are on for Mestinon?

I am on 3x 60 mg, four times a day. (720 mg daily)

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I do a 60mg pill, in the morning, and at lunch, sometimes in the afternoon. The trips to the bathroom are misery for me if I take too much Mestinon, so I try to go without, let my eye droop.

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I am lucky as I was able to work through the side effects. My dosage works for me, but wondered if not too high. Just interested and thank you for sharing.

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So yesterday I had a consult with an ophthalmologist. I went after 48 hours without Mestinon. Long story short, she diagnosed myasthenia gravis. I just need a neurologist to agree for next stage treatment!!

REPLY
@stephenbaker

So yesterday I had a consult with an ophthalmologist. I went after 48 hours without Mestinon. Long story short, she diagnosed myasthenia gravis. I just need a neurologist to agree for next stage treatment!!

Jump to this post

Wow, congratulations and my condolences. It's good to have answers.

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