Unknown Neurological disorder mimics MG

Posted by stephenbaker @stephenbaker, Mar 2 2:38pm

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?

Hello @stephenbaker and welcome to Connect,

I am so sorry to hear of this sudden onset of muscle weakness with no known cause. I can only imagine how disruptive that would be to your life. I am glad to hear that you are responding well to the med that has been prescribed. It sounds as if this has improved the quality of your life considerably.

As it seems like this began after an allergic reaction to an antibiotic, I'm wondering what type of meds were given to you for that reaction. Were you given prednisone? If so, for how long? On Mayo Clinic's website, they list muscle weakness and muscle wasting as a possible side effect of prednisone use. Here is the link to that information, https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269

Here is a recent article from Mayo Clinic about someone with leg weakness and the help they received from Mayo Clinic. https://connect.mayoclinic.org/champions/newsfeed-detail/?link_id=6009080

While there isn't any way Connect can give you a ballpark figure tor an appointment at Mayo if you call the appointment department they can surely assist you with that information. Here is the link to that department, http://mayocl.in/1mtmR63.

Unfortunately, when a patient has a problem that does not fit neatly into some diagnostic category it isn't unusual to get a referral to a psychologist. Please do not be discouraged by this but keep advocating for yourself until you find an answer.

Will you post again and let me know how you are progressing?

REPLY

Hi, @stephenbaker – I also wanted to offer my welcome to Mayo Clinic Connect. If you click on VIEW & REPLY in your email notifications, you will be taken right to this post in the discussion you started.

I'd like to invite others who have mentioned myasthenia gravis into this conversation for their input on your potential myasthenia gravis and your search for a definitive diagnosis. Please meet @Erinmfs @mike1944 @parrotqueen @janyce. Hoping they can offer some support and insights on what may be happening with you as you try to get some answers.

You said the suggestion to see a psychologist or psychotherapist felt astounding to you. What are you thinking of doing with this? Are you thinking of going?

REPLY

Hi, I have MG and I'm a trained MGFA Support leader. I am so sorry to hear about your MG-like situation. I too came to have MG by taking an antibiotic (doryx), having a reaction, and ultimately contracting this awful condition.I blame that doryx, but doctors cannot confirm it was the doryx. Yes, MG support group members all have their war story on trying to get a definitive diagnosis. Please see Mayo's neurology team for guidance, they are experts. Do it now, it will save you time and money later and you won't waste your time and $ seeing lower quality neurology practitioners. My MG was definitively diagnosed by a neuro opthamologist Dr Chen (he did a tensilon test) and my eye popped wide open. He smiled and said , " that's MG alright! " , I've also seen Dr Sorenson, Dr Jones, Dr. Ahlskog and had a complete workup to rule out everything else, like multiple sclerosis. I hope it's ok to give my neurologists kudo's like that. I was tested for MuSK several times in several locations, and after 2 years, the test finally came back positive at Mayo, have you had your MuSK antibodies tested, you didn't mention that, although it's possible for the MuSK test to be negative but to respond to Mestinon favorably (that's what happened to me) and that is considered a positive MG test (taking Mestinon, does that help?) kinda thing. MuSK antibody test is so difficult to get a real result on.

There are a few different types of MG, check out http://www.myasthenia.org, I believe I saw the descriptions there, and they have more scientific, research-related information on the different types of MG. I have MuSK ocular myasthenia gravis. Very rare. My ocular MG escalates to a real mess if I exercise strenuously or become overheated.

Unfortunately, the bad news for you is that I've heard similar stories to yours online and in person. You sound like the latest member to MG support. You didn't mention the need for IVIg? I have participated in support groups for http://www.myasthenia.org (the MGFA), and Conquer MG (www.myastheniagravis.org). Yes, even heat, a hot tub can trigger symptoms. I have a terrible time when the thermometer climbs above 90 degrees, hot tub or not. I have never needed IVIg or plasmaphersis, but I've led support groups where the clinicians came and taught us all about those procedures. I don't want either procedure!

My good news for you is that many people go into remission. I would was in remission for several months, and my right eye drooped on me last week 🙁 . Luckily, doctors will tell you that I have ocular MG, and not generalized, and doctors feel it's unlikely that my MG is life threatening, as I've never needed an IVIg.

I recommend eating as many green vegetables as you can, it helps me! I once had ptosis in my eye, and I made some red cabbage cole slaw, and ate many helpings of that. Cleared up my MG symptoms, I went into remission that same week. Eat your vegetables and get plenty of rest. That helps me. I'm into oven roasted brussel sprouts, red cabbage slaw, and kale kale kale.

I hope this helps, feel free to ping me with the @ sign if you want to talk some more.

REPLY
@Erinmfs

Hi, I have MG and I'm a trained MGFA Support leader. I am so sorry to hear about your MG-like situation. I too came to have MG by taking an antibiotic (doryx), having a reaction, and ultimately contracting this awful condition.I blame that doryx, but doctors cannot confirm it was the doryx. Yes, MG support group members all have their war story on trying to get a definitive diagnosis. Please see Mayo's neurology team for guidance, they are experts. Do it now, it will save you time and money later and you won't waste your time and $ seeing lower quality neurology practitioners. My MG was definitively diagnosed by a neuro opthamologist Dr Chen (he did a tensilon test) and my eye popped wide open. He smiled and said , " that's MG alright! " , I've also seen Dr Sorenson, Dr Jones, Dr. Ahlskog and had a complete workup to rule out everything else, like multiple sclerosis. I hope it's ok to give my neurologists kudo's like that. I was tested for MuSK several times in several locations, and after 2 years, the test finally came back positive at Mayo, have you had your MuSK antibodies tested, you didn't mention that, although it's possible for the MuSK test to be negative but to respond to Mestinon favorably (that's what happened to me) and that is considered a positive MG test (taking Mestinon, does that help?) kinda thing. MuSK antibody test is so difficult to get a real result on.

There are a few different types of MG, check out http://www.myasthenia.org, I believe I saw the descriptions there, and they have more scientific, research-related information on the different types of MG. I have MuSK ocular myasthenia gravis. Very rare. My ocular MG escalates to a real mess if I exercise strenuously or become overheated.

Unfortunately, the bad news for you is that I've heard similar stories to yours online and in person. You sound like the latest member to MG support. You didn't mention the need for IVIg? I have participated in support groups for http://www.myasthenia.org (the MGFA), and Conquer MG (www.myastheniagravis.org). Yes, even heat, a hot tub can trigger symptoms. I have a terrible time when the thermometer climbs above 90 degrees, hot tub or not. I have never needed IVIg or plasmaphersis, but I've led support groups where the clinicians came and taught us all about those procedures. I don't want either procedure!

My good news for you is that many people go into remission. I would was in remission for several months, and my right eye drooped on me last week 🙁 . Luckily, doctors will tell you that I have ocular MG, and not generalized, and doctors feel it's unlikely that my MG is life threatening, as I've never needed an IVIg.

I recommend eating as many green vegetables as you can, it helps me! I once had ptosis in my eye, and I made some red cabbage cole slaw, and ate many helpings of that. Cleared up my MG symptoms, I went into remission that same week. Eat your vegetables and get plenty of rest. That helps me. I'm into oven roasted brussel sprouts, red cabbage slaw, and kale kale kale.

I hope this helps, feel free to ping me with the @ sign if you want to talk some more.

Jump to this post

Teresa, thank you, thank you, thank you!! I could give you a big tight hug!
This journey is like a ‘war’ and so often, I feel like I am battling against the system! It feels like I have to convince Neurologist that the symptoms I have are real even though often they can see the ptosis for themselves!! Thank goodness that my GP and family are behind me!!
My ACHR was 113 last July. I was advised that I needed to be over 300 to be positive. I don’t understand why the 113 doesn’t count. Lol.
My MuSK was negative last July.
Interesting you stating that a positive response to Mestinon in itself is a positive for MG. Is that just for MuSK or both, MuSK and AcHR?
I am taking lots of time resting, I can’t do anything else otherwise my symptoms catch up with me, and I am useless for anything and just have to go to bed and recoup my energy.
I appreciate the diet advice and will follow for sure. I have been trying to do little walks at times. You have to laugh, that there is a 2.6km walking loop that I do. A lady last week ran past me three times! If you don’t laugh you’d cry hey!
I actually want IVIG as I want to stop this progressing which it continuing to do, but as I don’t fit into any tick box, further therapy is denied to me.

REPLY

Thank you again Teresa. I will be seeing my GP as we strategize our next move.
I especially appreciate you sharing that you responded to Mestinon before any antibodies revealed themselves. My EMG and single fibre EMG is also normal. Was that for you too?

REPLY

Sorry ‘NiceHat’ I am just getting used to this blog!

REPLY

Teresa, appreciate you connecting me with others on this journey.
In regards to the psychologist or psychotherapist suggestion, I will NOT be following up on that advice. Any mental health professional assessment on my medical record, I know will get me labelled negatively and impact my journey towards a definitive diagnosis! A mental health assessment for someone in my position was described as a death sentence.

REPLY

I have to say that Mestinon has really helped me. Without it, I am just exhausted and my arms and legs feel heavy like lead. The first time I took the medication, I didn’t think it was impact me until 45 minutes after I took the medication and had my dinner. I had a completely different throat!!! I could eat and swallow effortlessly. My mouth and throat is the area of mg body most impacted by Mestinon.

REPLY

One other important thing, is are you taking other medications currently? The University of Illinois college of pharmacy has put together a list of medications that can trigger myasthenia gravis. I have hit a few of these medications, and I had my myasthenia flare. My advice is to consult with http://www.myastheniagravis.org, the link "what makes MG worse" is important, and there you'll find the medication lists, here's a link to it, April 2015
https://dig.pharmacy.uic.edu/faqs/2015-2/april-2015-faqs/

REPLY
@stephenbaker

Teresa, thank you, thank you, thank you!! I could give you a big tight hug!
This journey is like a ‘war’ and so often, I feel like I am battling against the system! It feels like I have to convince Neurologist that the symptoms I have are real even though often they can see the ptosis for themselves!! Thank goodness that my GP and family are behind me!!
My ACHR was 113 last July. I was advised that I needed to be over 300 to be positive. I don’t understand why the 113 doesn’t count. Lol.
My MuSK was negative last July.
Interesting you stating that a positive response to Mestinon in itself is a positive for MG. Is that just for MuSK or both, MuSK and AcHR?
I am taking lots of time resting, I can’t do anything else otherwise my symptoms catch up with me, and I am useless for anything and just have to go to bed and recoup my energy.
I appreciate the diet advice and will follow for sure. I have been trying to do little walks at times. You have to laugh, that there is a 2.6km walking loop that I do. A lady last week ran past me three times! If you don’t laugh you’d cry hey!
I actually want IVIG as I want to stop this progressing which it continuing to do, but as I don’t fit into any tick box, further therapy is denied to me.

Jump to this post

You asked…
"Interesting you stating that a positive response to Mestinon in itself is a positive for MG. Is that just for MuSK or both, MuSK and AcHR?"

I'm saying that because I had a non-Mayo neurologist have his med student put an ice pack on my eye, chill my eyelid, then said, "that looks like MG". I didn't believe him, what a dumb test! He gave me mestinon, and it helped. And he told me that if the Mestinon helps , it's MG. Perhaps the 'tensilon test' that I had at Mayo is a shot of Mestinon? I'm not sure, but my eye popped open with the tensilon test, but I was in the neuro opthamologists office.

we MG patients are called Snowflakes , I don't like the term, but our neurological symptoms are the same, but different at the same time. For example, I took a medication one time, and couldn't swallow, I was choking on my drinks. I investigated, found the med on the April 2015 list, discontinued the med, and I haven't had a swallow problem since. My PCP ordered a gastroenterologist to put a scope down my esophogus and look. I cancelled that gastroenterology procedure, and went with the University of Illinois April 2015 MG FAQS. I'm glad I did. PCPs or GPs don't understand MG. I'm always referring to the information on http://www.myasthenia.org, and http://www.myastheniagravis.org with my physicians.

another time, a colonoscopy was ordered by my GP. The colonoscopy was to use an anesthesia found on that medication website. I cancelled the colonoscopy and had a ColoGuard test done instead. No anesthesia .

I've had 4 days of Mayo neurology testing me for just about everything, and the result was MG. I'm very grateful to have had those 4 days.

REPLY
@Erinmfs

One other important thing, is are you taking other medications currently? The University of Illinois college of pharmacy has put together a list of medications that can trigger myasthenia gravis. I have hit a few of these medications, and I had my myasthenia flare. My advice is to consult with http://www.myastheniagravis.org, the link "what makes MG worse" is important, and there you'll find the medication lists, here's a link to it, April 2015
https://dig.pharmacy.uic.edu/faqs/2015-2/april-2015-faqs/

Jump to this post

I appreciate the websites, @Erinmfs, especially the one about medications to avoid. This is very helpful in understanding this disorder/

REPLY

Thank you to both of you for taking the time to respond. I very much appreciate your help and advice.
I didn’t even know what this disease was until last fall. By a process of elimination, my GP and I suspected MG. I am a nurse and investigated rigorously to have the knowledge to advocate for myself and know my facts as best that I could.
I am not on any medication that affects MG and pharmacy has a diagnosis of MG on my file so that I didn’t inadvertently get something riddled in magnesium. Lol. Or anything else.

You guys have given me hope that I will be able to gate crash the barrier to receive further treatment.
As a first step, I am going to get all of my records sent down to Mayo for a review. I believe that is free.
I am very nervous of the cost. In the USA, you maybe used to the concept of paying for healthcare, but I am British, lived in Australia, New Zealand and UK where healthcare is free. I just have no idea of how much a 4 day testing for MG would cost.

REPLY

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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@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)

Jump to this post

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.

REPLY

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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