Does anyone else have muscle weakness plus ptosis?

[rel8ted]

I have a worsening ptosis that has already been corrected once and the lid no longer completely closes, so not eligible for another bleph. My other eye has (in the last 6-8 months) also started drooping, as well as one side of my face. I've had issues with leg weakness through the years and now also having difficulty lifting with my right arm & raising my arms to reach anything overhead.

I am negative for MG antibodies, LEMS antibodies, negative Mayo panel from neuro, have been tested for lupus, RA, SS, and more.

Negative EMG, but SFEMG scheduled for end of May in eye/facial muscles. Also have a full autonomic workup scheduled for October.

Is there anybody else that looks like they have a neuro muscular issue, but all the test come back negative?? I'm about at the end of my very last nerve.....

 

[Wishful]

I don't know if it's related, but I've developed double vision in the last year or so. I assume it's due to ME affecting signals to muscles. I've forgotten the details, but I think the muscles controlling the eye are effectively inside the BBB. I'm not sure about eyelid muscles.

A quick search turned up: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5513921/ It mentions that ptosis is often caused by mitochondrial problems. Since ME seems to involve mito problems (cause or effect?), ptosis isn't surprising as a symptom. I don't feel up to reading the whole article, but you might look into the possibility that it's a mito issue, and try some treatments that boost mito function. Even if you can't find a good treatment, you could experiment to test the hypothesis. If there was a suitable mitochondrial inhibitor, you could try that to see if your ptosis got worse.

I suggest you mention the mitochondrial aspect to your doctors. Maybe they'll have a way to test that hypothesis.

 

[Gingergrrl]

I am negative for MG antibodies, LEMS antibodies, negative Mayo panel from neuro, have been tested for lupus, RA, SS, and more.

There are sero-negative cases of all of these (or many of these) illnesses. Didn't one Neuro think that you might have sero-negative MG?

Negative EMG, but SFEMG scheduled for end of May in eye/facial muscles. Also have a full autonomic workup scheduled for October.

I am glad that you will be having a SFEMG and a full autonomic work-up. I only had a regular EMG and nerve conduction test (in 2016) but not a SFEMG that was poorly conducted at that time and useless.

Is there anybody else that looks like they have a neuro muscular issue, but all the test come back negative?? I'm about at the end of my very last nerve.....

I had neuromuscular issues (not ptosis or any ocular symptoms) but then I was positive for the LEMS autoantibody (and am still positive now even though the symptoms are in remission from treatment).

 

[rel8ted]

There are sero-negative cases of all of these (or many of these) illnesses. Didn't one Neuro think that you might have sero-negative MG?

She did, but we are getting down to the end of testing & I’m afraid of being told it’s nothing again.

 

[Gingergrrl]

She did, but we are getting down to the end of testing & I’m afraid of being told it’s nothing again.

It is most definitely NOT "nothing" and I am glad that you are continuing to search.

If I had a dollar for every doctor that told me that my illness was "nothing", I would be rich now. I have literally lost count of all of the cardiologists, pulmonologists, neurologists, etc, who dismissed my illness as nothing over the course of several years. Some were nice but useless, others were rude and dismissive, and some were outright mean-spirited and vengeful. But nevertheless, I persisted (not sure how... I just knew something was truly very wrong).

 

[Wolfcub]

I had slight ptosis in my right eyelid, most noticeable when I woke up in the morning. One of the first sudden symptoms of my illness just over a year ago was a constant twinge over my right eye, but not seeming to be located only to the eye as I felt it also in the right forehead and cranium. Then my eyelid was twitching with an uncontrollable "tic" frequently (...and it still does that from time to time) That was with other awful symptoms -not isolated.

The slightly droopy eyelid doesn't seem as bad now, but occasionally I notice it, especially when generally "crashing".

I also have had muscle weakness and some muscle wasting even though I have kept as active as possible under the circumstances and have continued to eat a healthy balanced diet with few restrictions and sufficient protein.

All the testing done on NHS (UK) including a head CT were normal.

 

[rel8ted]

The slightly droopy eyelid doesn't seem as bad now, but occasionally I notice it, especially when generally "crashing

Mine was manageable until about a year ago it took a turn for the worse. As of last week, if I don’t put a lot of energy into keeping it open, it shuts as completely as it is able, so I am now going around 75% of the time with one eye closed. I also have begun to notice my face dropping on that side and the muscle feels like it’s numb ( much like the feeling of dental anesthesia).

 

[Gingergrrl]

Mine was manageable until about a year ago it took a turn for the worse. As of last week, if I don’t put a lot of energy into keeping it open, it shuts as completely as it is able, so I am now going around 75% of the time with one eye closed. I also have begun to notice my face dropping on that side and the muscle feels like it’s numb ( much like the feeling of dental anesthesia).

Have you been tested for the MuSK autoantibodies in addition to the AChR binding autoantibodies and Calcium Channel (LEMS) autoantibodies?

 

[rel8ted]

Have you been tested for the MuSK autoantibodies in addition to the AChR binding autoantibodies and Calcium Channel (LEMS) autoantibodies?

Yes

 

[Gingergrrl]

Yes

From everything you have described to me (way beyond just this thread), I feel like you must have a sero-negative case or something else neuromuscular that we are not aware of to test.

 

[Judee]

I don't have any good info to help with this but I do feel badly that you are going through this, @rel8ted.

I hope you can get some answers soon.

 

[pattismith]

Hello @rel8ted , you really need investigations for your muscle syndrome.

I too have muscle symptoms and a slight eyelid ptosis (nothing that a doctor would notice but I can see it when I look at photos and compare when I was younger).
I had some autoimmune tests done, but all came back negative.

Muscle weakness and eyelid ptosis can have several causes that doctors don't necessary think about at first.

For example hormonal problems that lower muscle tone can be involved, and some doctors agree that hypothyroidism should be investigated:

"We report here on a case of central hypothyroidism that was due to Sheehan's syndrome and it manifested as bilateral ptosis in a 51-yr-old woman. She complained of exertional dyspnea and weakness. The laboratory studies demonstrated hypopituitarism with secondary hypothyroidism. The ptosis was improved by replacement of thyroid hormone. Hypothyroidism should be considered in the differential diagnosis of patients who manifest with ptosis and that prompt replacement of hormone can lead to a complete recovery."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069581/

Mitochondrial diseases are also a well known cause of ptosis.

In my personal case, my thyroid level and my testosterone levels where in the low normal ranges.
I don't really think they were causing my muscle weakness, but it may have worsen it.
(Androgens are important for muscle tone as well as thyroid hormons)

I improved my thyroid hormon level with supplements, but it didn't help my symptoms.
Then I did a trial with testosterone gel and I got a quick relief of both my pain syndrome and my muscle weakness syndrome. My trial is rather new, so I have no idea if the benefit will be stable, but androgens should be investigated too. Do you have dry eyes?

 

[Wolfcub]

Mine was manageable until about a year ago it took a turn for the worse. As of last week, if I don’t put a lot of energy into keeping it open, it shuts as completely as it is able, so I am now going around 75% of the time with one eye closed. I also have begun to notice my face dropping on that side and the muscle feels like it’s numb ( much like the feeling of dental anesthesia).

That could be the trigeminal nerve. Have you had a neurologist look at it? I am sorry....you might have said that. Sometimes my mind is like a sieve (is that how you spell "sieve"?)

I don't know if this little video will be helpful for you??

 

[rel8ted]

From everything you have described to me (way beyond just this thread), I feel like you must have a sero-negative case or something else neuromuscular that we are not aware of to test

And the $10,000 question is do I actually have a doctor that can or will do anything about it!

 

[rel8ted]

That could be the trigeminal nerve. Have you had a neurologist look at it? I am sorry....you might have said that. Sometimes my mind is like a sieve (is that how you spell "sieve"?)

No, this is definitely neuromuscular.

 

[rel8ted]

Hello @rel8ted , you really need investigations for your muscle syndrome.

I too have muscle symptoms and a slight eyelid ptosis (nothing that a doctor would notice but I can see it when I look at photos and compare when I was younger).
I had some autoimmune tests done, but all came back negative.

Muscle weakness and eyelid ptosis can have several causes that doctors don't necessary think about at first.

For example hormonal problems that lower muscle tone can be involved, and some doctors agree that hypothyroidism should be investigated:

"We report here on a case of central hypothyroidism that was due to Sheehan's syndrome and it manifested as bilateral ptosis in a 51-yr-old woman. She complained of exertional dyspnea and weakness. The laboratory studies demonstrated hypopituitarism with secondary hypothyroidism. The ptosis was improved by replacement of thyroid hormone. Hypothyroidism should be considered in the differential diagnosis of patients who manifest with ptosis and that prompt replacement of hormone can lead to a complete recovery."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069581/

Mitochondrial diseases are also a well known cause of ptosis.

In my personal case, my thyroid level and my testosterone levels where in the low normal ranges.
I don't really think they were causing my muscle weakness, but it may have worsen it.
(Androgens are important for muscle tone as well as thyroid hormons)

I improved my thyroid hormon level with supplements, but it didn't help my symptoms.
Then I did a trial with testosterone gel and I got a quick relief of both my pain syndrome and my muscle weakness syndrome. My trial is rather new, so I have no idea if the benefit will be stable, but androgens should be investigated too. Do you have dry eyes?

Yes to dry eye. Lower end of normal on thyroid, but....also found out I have mast cell disease & allergy to all mammal products, so adding anything new is going to take on a whole new level of research. Still waiting for my last reaction to calm down-been 2 months now.

 

[pogoman]

Possibly one of the muscular dystrophies?
Besides muscle weakness some of them present with ptosis.

 

[mattytoo]

something like 8-10% of myasthenia gravis cases are seronegative for both AChR and MuSK antibodies (though it sounds like you've had both of those & more tested!) but they're still finding new antibodies that are implicated so seronegative MG is still a possibility. I'm on the waiting list for my SFEMG too, make sure the room and yourself is warm, heat can have a huge effect on the test.

I'm hoping my SFEMG comes back positive because that + my positive reaction to mestinon should be enough for a clinical diagnosis of MG (I'm also seronegative for AChR & MuSK). have you been able to try mestinon?

 

[rel8ted]

something like 8-10% of myasthenia gravis cases are seronegative for both AChR and MuSK antibodies (though it sounds like you've had both of those & more tested!) but they're still finding new antibodies that are implicated so seronegative MG is still a possibility. I'm on the waiting list for my SFEMG too, make sure the room and yourself is warm, heat can have a huge effect on the test.

I'm hoping my SFEMG comes back positive because that + my positive reaction to mestinon should be enough for a clinical diagnosis of MG (I'm also seronegative for AChR & MuSK). have you been able to try mestinon?

I did many years ago, but was unable to tolerate it. I have heard that it contains lactose & I found out shortly after that I have allergy to dairy. More recently I have developed an allergy to all mammal products, so it’s going to be fun from here on out to find meds.

 

[Gingergrrl]

Possibly one of the muscular dystrophies? Besides muscle weakness some of them present with ptosis.

How are different muscular dystrophies tested for? Is it with a muscle biopsy?

I'm hoping my SFEMG comes back positive because that + my positive reaction to mestinon should be enough for a clinical diagnosis of MG (I'm also seronegative for AChR & MuSK). have you been able to try mestinon?

I was wondering how you were doing (from your other thread) and send best wishes for your SFEMG. I wish that I'd had a SFEMG in 2016 (prior to my treatments to have as a baseline) but I didn't.

I did many years ago, but was unable to tolerate it.

I also did not tolerate 1/8th of a Mestinon pill but in theory it should have been a good med for me.

More recently I have developed an allergy to all mammal products, so it’s going to be fun from here on out to find meds.

You mentioned this before (and I apologize for my slow reply ) but is your new allergy to all mammal products from a tick bite or something else? Also, do you think it is permanent or possibly reversible?