Hi everyone,

I'm 46, About 8 months ago I noticed a slight slur creeping into my speech, it has gradually got worse to the point where I can barely talk now, it has generally been a gradual deterioration.

I also have weakness in my left arm/hand and a bit on my right side as well. I also have a lack of control over my emotions (emotional incontinence) although funnily enough I am not particularly emotionally upset at having the disease.

I have had a preliminary diagnosis of pseudo bulbar palsy which is a form of MND.

The main reason that I am questioning whether it could be MG or not is that there does seem to be a fair degree of fatigueability along with the weakness. At times the fatigue was worse than the weakness but as the weakness gets worse it becomes the prominent feature.

There have been a number of very mild muscle spasms, but the most notable ones happen in the thymus region which take my breath away (I always thought they were heart muscle flutters, which they could still be).

One unusual thing about my health prior to getting sick was that I was insatiable for salt and ate ridiculous amounts of it, this is one of the other reasons for looking into MG.

I have had lots of blood tests done but have not discussed MG with my neurologist (nor he with me) so I don't know if it's been tested for or not, and I don't have another appointment for 6 weeks so I'm looking to get some feedback here.

Thanks for any replies. I'm interested as to whether my symptoms could fit MG or not and looking for general advice and discussion. Ta

I think it is indeed reasonable to ask your neurologist to test you for MG.

I have heard of 2 patients who were diagnosed with MND, when in fact they had MG (so there are probably more I do not know of).

What does salt have to do with MG??

I was thinking same thing! I crave salt but think due to boredom, emotional cravings unrelated to MG (physically but emotionally caused by doing nothing caused by MG)

Would I know if he already had? He has done a series of blood tests so one or more of then could have been to test for MG, or if he suspected MG would he have sent me for a chest xray or ultrasound (which he hasn't)?

It was a post I found somewhere on the net where someone made a link between salt cravings and adrenal gland problems, he then went on to say that the adrenal problems affected his thymus.

He had a thymectomy for his MG when the possibility was that the thymus was only misperforming because he had adrenal gland poblems.

I know you shouldn't get too carried away with what you read on the net, but if you're careful it can be a valuable tool.

Certainly I should have told my neurologist about my massively excessive salt intake but by the time I saw the neurologist the intake had setlled down, added to that is that for some reason interview type situations trigger my emotions so I have to try and talk through a screwed up face when all I want to do is get out of there.

For that reason the visits to the neurologist are not as productive as they should be.



I looked on the net when my problems first began and had little doubt that if they continued to get worse then it would be MND, my symptoms were "textbook" as my neurologist later put it. It wasn't until I realised that fatigue was a major component of my problems that I looked to see if this was consistant with MND and I found MG as a possibility.

To be clear though, my strength in the affected muscles has gradually diminished and never returns to 'full' now. One month ago my left arm/hand could have near full strength but would tire very quick with any work, now there is a permanent weakness to go with the fatiguability.

There is one anomaly that showed up on the EMG, the neurologist said it is not consistent with MND but more with diabetes or a vitamin deficientcy. I don't have diabetes and I think a lot of the blood tests have been done to try and identify the anomaly.

Hi, Andrew. Welcome.

My first thought when you mentioned a salt craving was Addison's disease. And a neurologist is not the one you should see for that but an endocrinologist. I highly suggest that you do see one as soon as you can. Do you have unusual sweating? Loss of weight? Feeling more tired towards the end of the day when cortisol is at its lowest? A good endo will do morning, fasting labs (especially cortisol and other tests like ACTH). If you have Addison's, it's nothing to mess around with.

Have you had your B12, vitamin d, thyroid and CBC done? Your primary doctor can do that. A B12 deficiency is common, especially at your age, often goes undiagnosed and can cause a lot of neurological problems, especially peripheral neuropathy.

I would also suggest that you get copies of everything that the neuro did do, such as the EMG and the blood tests. Always get copies of your records, which they should give you free of charge. And you have the right to know exactly what those test results mean, which it doesn't sound like you do. Sometimes doctors run tests and they "think" that's the logical end of doctoring. It's only the beginning.

Can you describe in what muscles you are experiencing the weakness? MG often begins in the head/neck region, with ptosis (toe-sis) being the first sign of it. Ptosis is eyelid drooping but it can also be eyebrow and face drooping! If you do notice you have ptosis, take a photo of it.

Yes, MG is all about fatigable weakness. It's unique in that way. Is your weakness confined to the bulbar muscles? Since MG starts in those areas, it should be considered in the differential diagnosis.

So you might need to see an endocrinologist and your primary doctor as soon as you can to "help" the neurologist in figuring all of this out. And don't assume there's only one thing going on. There might be more than one.

I hope you'll get help soon. Please holler if you need more help!

Annie

Thanks for that Annie, I haven't had any excessive sweating, and there has been no ptosis, for the first 6mths it was really only in the bulbar muscles with speech, swallowing and emotions affected.

Then I noticed occasional weakness in the left hand mostly but it would be true that the whole arm had weakness/fatigueablility, just more noticeable in the hand/grip. The right arm is similar except to a much lesser degree.

I had come across addisons before and although I have 3 or 4 of the listed symptoms I wouldn't have thought my symptoms overall were typical of it.

If it wasn't for the fatigue I wouldn't even be looking at MG, right now I have to speak in half sentences because as bad as I sound at the start of talking it quickly deteriorates to the point where I literally can't talk at all, almost as though I have forgotten how to, and then after a short break I can talk a bit again.

Another example is about 2 months ago I loaded my left arm up with a lot of wood, I was very happy that I could still carry so much but as I walked in to the house the arm started quickly failing to the point I ended up using both arms and still almost lost it. So the strength was fine but it dwindled quick under load and I'm not too sure that this is common with MND or perhaps a sign of MG.

You asked "Have you had your B12, vitamin d, thyroid and CBC done?". I can only imagine that the vitamins would have been done because he was particularly interested in a vitamin deficiency after the EMG. Is the thyroid a blood test? If so it may have been done but if it is an imaging test then it hasn't.

Yes, when doctors check your thyroid it is usually with blood tests: TSH (thyroid stimulating hormone), Free T4, T4, T3. Some situations do require an ultrasound of the thyroid, if someone finds a nodule.

Please do not assume anything! You need to get your records and make sure of what tests were done and what the results were.

Most neuromuscular diseases have a "fixed" weakness that can progress over time, though some are more "static." MG has fatigable weakness that flucuates with sustained or repetitive activity, like holding logs in your arms for awhile!

I don't know where you live but if you could try to find an MG expert, that might be a good idea for a second opinion. There's nothing wrong with that! And most MGers get a Single Fiber EMG done, which is more sensitive for MG than a regular EMG.

You really want to know exactly what is going on since the treatments for diseases vary! I hope you'll get your records and make some more appts. Good luck.

Annie

Annie is right,

Many times physicians look for one unifying explanation for everything that is going on with the patient (Ocam's razor). This is more "elegant" and creates a feeling of a complicated puzzle put together.

But, more times than not, there is, in fact, more than one thing going on (Saint's triad). This can create a very confusing picture and lead to wrong directions.
http://www.nejm.org/doi/full/10.1056/NEJMcps031794

Also, quite often physicians lose their simple common sense, which gets buried under an enormous pile of tests, documents, guidelines and boxes they have to tick. Many times they are just too busy with all the documents and charts that they just don't have time to listen to their patients.

The hallmark of myasthenia is that there is disproportionate decrease in muscle strength with activity. You can blow one time with near normal force, but the second time it will be half of that. There is also at least some improvement with rest. In some patients the weakness at rest is more pronounced and in others less.

Possibly, you could have myasthenia with mild Addisson's disease (which can also lead to muscle weakness) and this combination may create a very confusing clinical picture or appear as something else.

Thanks Annie and Alice