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Hi everyone. You all have big hearts and I appreciate the time and help. I wrote in a different thread, under "husband," but this is a specific question; when the doctor asks if you feel fatigue at the end of the day, how on earth can you separate exhaustion because you're not sleeping at night from fatigue caused by a MND?

While it seems that to reach a diagnosed, doctors rely on clinical symptoms over time, it is hard to answer questions that could help.

So much information, so much steep learning curve early on. My husband hasn't yet been given a diagnosed - the neuro said it was one of three things - myasthenia gravis, als, or a myopathy. Another neuro said he'd be inclined to rule out myasthenia as my husband said he didn't feel increasingly tired as the day goes on, but this is hard to state as he doesn't sleep during the night so sleeps late in the day (it's the holidays, ho, ho, ho) and so is actually more tired in the morning due to exhaustion. But of course he is tired at night as well, so hard to rule out myasthenia based on that.

His symptoms are: difficulty swallowing and lots of mucous/saliva, weight loss (due to not eating at the outset and now literally mush diet), no muscle weakness, no tremors, no cramps. MRI clean, fFirst EMG clean, second doctor didn't say, blood test and 3rd EMG next week.

Any of this sound familiar to any of you all?

Also, any advice as to how to approach serious disease of a parent with a nine-year-old daughter?

Thanks as always,
I hope for all of you that it is not ALS. My own doc agreed with my guess that my case certainly sounds like MG but he said this is a "notoriously hard disease to diagnose." I like the idea of this disease because it means a modified lifestyle but is manageable.

We have a few parents with young children. Try the search feature from the tab at the top of this screen to bring up some of the older threads that discuss how to help children cope. If it turns out to be ALS (Knock wood it does not come to this) there is a site to help children. But lets wait and see. It may not be as bad as you fear.
Cordially, Cindy
MG has a specific test to DX, I had it done, and it was negative.
Glad you don't have MG - what was the test? He's seeing two neuros and neither mentioned a definitive MG test.
Thanks so much,

I hope one of our more knowledgeable posters chimes in , as I don't know a whole lot about MG (As someone without a diagnosed you'd think I would have looked into it more ;) ). MG can be a little tricky to diagnose, and there are some variants that are harder to pin down than others.

MG is usually diagnosed through a series of clinical findings, blood tests, and may include a repetitive nerve stimulation test (basically firing electrical impulses through muscle groups and measuring fatigueability). The blood test is reasonably accurate for classic MG antibodies, but in certain variants MG sufferers can still test negative.

A single fiber EMG is considered a very sensitive tool in helping to diagnose MG, but due to the skill required to perform one (it is different than the one performed in the office of your local neuro), it is usually only performed at academic medical centers. In a case where the doctor is wrestling between a handful of options, a muslce biospy may be performed to look for the presence of secondary antibodies in the neuromuscular junction. Also less frequently the dr. may try an edrophonium chloride test to see if fatigue is temporarily relieved, indicating a good likelihood of MG.

Hope this helps,

Hi ... there are three blood tests for MG, to detect the presence of certain antibodies. All together, however, these only account for about 90% of diagnosed MG. (Probably because there are more than 3 antibodies that can cause the symptoms ... they just haven't identified them all yet.)

Myasthenia Gravis is an autoimmune disease in which the thymus gland produces antibodies that keep signals from the brain from reaching the muscles. An EMG cannot distinguish between ALS and MG ... it requires careful clinical observation to tell them apart. The great thing with MG is that the brain neurons do not die and the muscles do not atrophy, so once neurologists eliminate the antibodies from the system, the brain and muscles are able to function normally again. Treatments for MG are harsh, but very effective.

I hope that you will get good news on this. Waiting for a diagnosis is very difficult.
Thank you BethU. I knew that MG was one of your early possibilbites, and was hoping you would post knowing you knew a lot more about it than me :)
Thank you BethU

Thank you again. All your responses are so thought-out and articulate. I'm sure you are a great comfort to the readers.
E (perplexed)
Hi E,

Could your husband's fatigue be due to a lack of quality sleep while he actually is sleeping? If he has any sort of apnea, whether it is stemming from a specific weakness cause, or just because he's a (middle aged? sorry I don't know) man, this could be a contributing factor. Does he snore? Even if he's having episodes of not complete apnea, but a reduction in the amount of oxygen he is getting in at night, this will really cause more fatigue than one would think. Does he awaken with headaches? (another sign) and these headaches will go away after he's up and about for a bit?

Its something to consider. Good luck to you both! :)

I can speak from the "fatigued" side of things. The difference, to me, between being tired and being fatigued has to deal with muscles. I have reduced strength in arms and legs and only rest/sleep will put it right.

Put another way, fatigue comes from over-exertion only in the case of neuro-muscular trouble, you don't have to do much exerting. This has been my experience with fatigue.

Hope this helps. Someone feel free to slap me if I've got it wrong!:p

Hi, I wonder if I can help with the difference between fatigue and tired as well. Like Zaphoon I also think of the difference as being about muscles. I tried to explain to my doctor that I am not tired in the sense that I want to take a nap or am sleepy or drowsy, but that my muscles feel exhausted-that lifting my arms or going up the stairs and sometimes even sitting up straight requires too much exertion; they shake and wobble. Like Zaphoon only rest (not necessarily sleep) restores it (but never quite right like I used to be). I call this muscle fatigue versus being "tired".

fatigue vs weakness

To all of you - I think you are great for your answers and for your time in addressing the questions. It sounds like exhaustion, not weakness to me (still not having 2nd EMG results though) as he literally sleeps all day as he doesn't sleep at night. He's never been a morning person, but now his sleep patterns are all mixed up so when the neuro asked if he's more tired as the day wears on, it's difficult to answer.

He went for sleep apnea testing years ago - spent the night at the clinic - but they said it was simple snoring from his deviated septum, not strict apnea. Of course, like most tests, the results are only as good as the person reading them, and they could have been wrong. He hasn't woken up refreshed for years and years - no energy, no oomph. I also put this down to having stopped working out on a regular basis but - you can only nag for so long so I stopped.

About weakness, are there any home tests I can do, for example, having him push against my hand or arm? It's hard to gauge of course without any baseline. He was a strong person, though lazy - used to run and exercise but started making excuses not to go to the gym regularly years ago - too much work, "I'll do it later/after this trial" etc.

Like many of you, I'm grasping at any straw and trying to be normal meanwhile for the family until things are settled one way or another. I woke up thinking how great everyone on this forum is, to spend time addressing others' concerns. Nice to know how many good people are out there in the world.

Whew - what a blog - must have needed to vent. Tnx.
If your hubby has any bulbar weakness, (and he does) it very well could include soft palate weakness, and the sleep apnea study he had a while back should be repeated.

I don't snore (my better half always said I didn't, but how would he know when once he's asleep he's practically unconscious, and snores himself~) - but sometimes I'd wake up with my throat completely closed. A 'good' night's sleep did not refresh me, and I was fatigued all of the time. None of my doctors put it together, they'd only ask if I snored, and I'd say no.

Then, my laryngologist noted soft palate weakness, started asking specific questions, rather than asking if I snored, she asked if I had headaches ~ and I was having such horrible headaches in the middle of the night that I'd think they were migraines, but once I got up and would go to get my migraine medicine the headache would start to abate. I also was having milder ones that I'd wake up with every morning.

I think the other doctors hadn't paid attention because not only was it not their field of interest, but they were looking at my fatigue from a standpoint that if I had an autoimmune condition, fatigue is a hallmark of most.

Anyway, I was sent for a sleep study, and found to have moderate apnea ~ and this was when I was barely able to fall asleep, as one does not usually sleep soundly when all wired up LOL. When I sleep deeply, the sleep study doctor told me my apnea could be severe. Even those with mild sleep apnea benefit greatly from CPAP or BiPAP use at night.

The other part of your question about a person being fatigued versus weakness, I think he would notice on his own, its like a gradual dawning of realization that a familiar activity is giving one trouble doing it. Other even more subtle things, such as a favorite drinking glass feeling heavier, or trouble getting up from the toilet. I don't think there is any type of test you can give him at home (maybe someone on here knows of one) but you might notice if he moves differently or takes longer doing something that would involve lifting, etc.

Balance issues are the same way, no one thinks much about it if they start to topple over stepping into their pant leg, and its a one time event, but if it starts happening with a frequency, eventually it sinks in that something is "off".

MG will cause repetitive movement fatigue of a muscle, and then the muscle will recover with rest, and after a period of hours, the person will be strong as they were before, until it is fatigued again by the repetitive motion.

That's not to say that a repetitive motion won't tire a muscle of someone that has a MND, and then after rest they're stronger again than they were when the muscle was tired out, but the overall picture is a downhill slide, over time, the ability to do as many initial repetitions is going to decrease.

I know this period of time, with waiting for tests, etc, is just awful, try to remember that even though you may feel like your family is alone in this, there are many others that have gone down that road before you, and others that are right there with you.

take care :smile:

I really get a lot out of your answers. Your replies are always intelligent ones.

Another thing that I've thought of is, if you have a disease at work in you, it is sapping energy from you as it does its dirty work. In my thinking, this too, can cause fatigue.

Zaph, thanks :) ... I actually just came back on the forum just now to add to my original thought. I wanted to say that now that I have the BiPAP, I am much more refreshed when I wake, and I don't get the headaches, ..... but I still have fatigue. For me its very similar to jet lag, maybe I don't feel as bad as if I'd flown in from Madrid, but that is the "type" of tiredness. Some days/weeks its worse than others. Every time I think its gone perhaps for good, it comes back again.
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