[wesker17]

Hello everyone, i've been experiencing a myriad of 'odd' neurological symptoms over the last month, but it wasn't until ER visit #5 with breathing difficulty that i've become officially scared. A little less than a month ago I started experiencing a profound weakness in my left hand. My left hand became fatigued very quickly after little effort such as filling out paperwork, or driving a short distance. This weakness was accompanied with some profound pain in the tendons of my fingers and I figured I just had a bought of tendonitis since I spend a good amount of my daily life on the computer. My hand would 'feel better' after rest and then get fatigued and painful again incredibly quickly. This continues to be a problem 1 month later.

Shortly after the hand weakness/fatigue started the fasciculations and cramps started. My right calf in particular would ball itself slowly into a cramp that lasted days before finally releasing. First it was 12 hours, 2 days, and then 4 days. This was incredibly painful. This along with constant unrelenting fasciculations in my legs and feet. My left leg at night is like an 'electrical storm' popping and cracking and twitching all night long. Shortly after this the 'scary' symptoms began. I was up late one night and all of a sudden I got this incredible 'tiredness' in my tongue. Like I had been licking an icecream cone nonstop for hours though my tongue was sitting in my mouth unused. This too comes and goes in bouts with no explanation. One moment my tongue and mouth feel 100% refreshed and then within a few sentences become 'exhausted and weak' as if I had talked for hours. I saw my GP and she said it sounded like anxiety to which she prescribed Ativan. Shorty after taking them the fasciculations in my legs almost completely disappeared; still some occasional cramping and twitching but literally -90% of what it was. The only problem is that the fatigue issue in my tongue and hand is still present and the bouts are becoming more and more frequent.

Finally 5 days ago, I had what I thought was a 'heart attack' I woke up out of breathe and by mid day was gasping for air. I eventually realized that I wasn't going to be able to breathe much longer and called 911. They rushed me to the ER with me still gasping for air and did an EKG thinking I had a heart attack. The EKG was clean, they ran a number of tests including blood test and CT to see if I perhaps had a pulmonary embolism; all tests returned normal with the exception of there showing an abnormality with my thyroid. They ruled my visit as a 'panic attack' and sent me home saying that I needed to calm down. I believed them, until it continued to happen. I would be just sitting there calm as can be and all of a sudden feel like my lungs were heavy bowling balls that were heavy to lift and i'd begin to realize that my breaths are no longer 'satisfying' my need for oxygen. I've been to the ER 4 times in the last 5 days with these 'breathing episodes' and frankly they are sick of me over there. One nurse said to me last night 'what do you think we are? a pharmacy? ****!' even though i've only been given pain medication once in my 4 visits. I don't feel welcome at my local ER anymore and a afraid that the next breathing episode may be so bad that I die. I currently have a refferal to a neuro in the works but have to just wait for it to be approved. While consulting DR google on my symptoms, MG sounded like it fit me the best and I while I wait for my appointment i'm hoping that one of you wonderful members of this forum might has some insight for me of whether or not this sounds like MG or perhaps something else that is more obscure. Thank you

-Mike

[Panorama]

Originally Posted by wesker17

While consulting DR google on my symptoms, MG sounded like it fit me the best and I while I wait for my appointment . . .

Mike,

Welcome to the forum. He is a great primer on Myasthenia Gravis from the Medical News Today Knowledge Center:

http://www.medicalnewstoday.com/articles/179968.php

It was after reading this primer that I was convinced I had MG.

-Mark-

[Kitt]

Welcome wesker17.

[southblues]

You need to find a neurologist.

You also need to see a pulmonologist about the breathing to rule out any other kind of crap.

The weakness and shortness of breath could be MG.

They could also be unrelated to each other.

[AnnieB3]

Mike, I think you need to see an endocrinologist, too. You could have Graves disease (thyroid disorder).

Fasciculations are not a symptom of MG, but can be one of thyroid disorders. Or electrolyte disturbances. Or other neuromuscular disease (yeah, I know you probably thought of ALS).

Fatigable weakness is the hallmark of MG. Muscles are weaker upon exertion and relatively better upon rest/sleep.

Ativan helped? I hope you won't be offended by this, but are you generally a nervous person?

So, when you were in the hospital with breathing problems, did any of the genius doctors think to check your oxygen saturation? And not only while sitting, but while walking? Did they think to do a beside spirometry or a peak flow meter reading?! If you have to go in again, ask them to do objective measurements of your condition, not "guessing."

Do your eyelids droop? Look in a mirror and check. Do you have double vision? Hold your pointer finger at arms length and then bring it in slowly to your eyes. Do you see one or two fingers? If you close one eye, do you then only see one? MG double vision is called binocular and when you close one eye, it goes away. That's because the muscles of the eye area become weak to varying degrees and focus the eyes somewhat differently.

It couldn't hurt to ask the endo to check your vitamin B12 and D, too.

You probably have more than one thing going on, which means needing more than one specialist. The most concerning thing is your breathing and the thyroid issue. Don't hesitate to dial 911 if you can't breathe well, okay?! And then ask them to do the above breathing tests!

They can also do an Ice Pack test or a Tensilon test in the ER, if you have ptosis. And they can order the MG antibodies (AChR and MuSK).

BTW, have you ever been bitten by a tick or been in the out of doors lately? It could be Lyme Disease, too.

I hope you can get this figured out soon. It's not nothing and they need to take you seriously!

Don't be scared, just get better help.

Annie

[wesker17]

Hey Annie, thank you so much for your reply.

Fasciculations are not a symptom of MG, but can be one of thyroid disorders. Or electrolyte disturbances. Or other neuromuscular disease (yeah, I know you probably thought of ALS).

My doctor did mention that not drinkig enough water could attribute to the fasciculations. I'm a big 'water drinker' so I assume that rules out the possibility of it being electrolyte related. As far as an MND like ALS "Oh boy" I definitely was a little bit of a basket case in the beginning as the onset of my neurological symptoms (fasciculations + weakness) seemed to line up with textbook symptoms of MND like ALS. After some mild research, I realized that ALS is almost definitely off the table. Mainly because in ALS weakness doesn't ever get better. For me it's been bouts of fatigue that come and go.

So, when you were in the hospital with breathing problems, did any of the genius doctors think to check your oxygen saturation? And not only while sitting, but while walking?

They monitored my oxygen saturation while laying but not while walking. Initially in the attack, minor exertions like sitting up or turning over sent my oxygen level low enough to sound an alarm. 6 Hours later I walked out of the ER though with minimal fatigue.

Did they think to do a beside spirometry or a peak flow meter reading?!

They did neither of these tests, they performed a CT to rule out an pulmonary embolism and ruled my case as anxiety when the CT returned normal (though showing an enlarged liver).

Ativan helped? I hope you won't be offended by this, but are you generally a nervous person?

I definitely became one when the symptoms began. Though the Ativan reduced the fasciculations by 90% I still have them daily with long lasting cramps (days).

Do your eyelids droop? Look in a mirror and check. Do you have double vision? Hold your pointer finger at arms length and then bring it in slowly to your eyes.

Thank you so much for these helpful tests I can do. From my perspective in the mirror, my eyelids are perfectly symmetrical. It's interesting that you mentioned the double vision because on that day of the big attack, just before it happened I had extreme double vision. I was literally commenting to a family member about how I was seeing double just before I realized I wasn't getting any oxygen. That being said right now I don't have double vision.

It couldn't hurt to ask the endo to check your vitamin B12 and D, too.

Though I haven't yet been seen by an endo, my PCP ordered a blood test that included B12 and D and they both came back in normal levels.

You probably have more than one thing going on, which means needing more than one specialist. The most concerning thing is your breathing and the thyroid issue. Don't hesitate to dial 911 if you can't breathe well, okay?! And then ask them to do the above breathing tests!

Thank you for saying this, honestly the way I was treated might have kept me from making the call if it happens again. I most definitely will call next time.

I also wanted to mention that since the beginning of my symptoms, I haven't had a solid bowel movement. I read that this might have some relation to my other neurological symptoms. Most of the time it is liquid and pale brown almost yellowish. Sorry for the graphic detail and thank you again for taking your valuable time to reply to me here.

[AnnieB3]

Might you have celiac disease?!!! That's the problem with forums. We don't have all of the info AND we aren't doctors.

You should be checked for celiac. Also, what did they say was a "normal" B12? Symptoms of a deficiency can happen even if a level is in the normal range.

Start taking pics of your face in the morning and then later in the day. See if you notice a change.

Lupus can also cause some of the symptoms you have.

I'm just taking a shot in the dark, here.

Annie