MG, MS, LEMS, ?? what can it be
 

Hi all,
I'm frustrated, confused and wondering if it's all in mind.

My drooping eyelid, fatigue and weakness had me sure it was MG. After an eye exam, I was even more convinced, Dr. said it was textbook MG. My PCP said seem more like MS.

The MG blood work came back normal.

The last few days in the late afternoon my legs seemed so weak I could barely walk. They felt like they were a thousand lbs. and it was so hard to balance and walk. But after resting for a few hours, I felt so much better. From what I read that is more in-line with MG, then MS.

There are other symptoms like face numbness and no expression, jaw felt heavy, arm weakness with over use. And the droopy eye that comes and go.

But then there are odd shooting pains all other. Some of are like bee stings, real quick that last only seconds. my wrist and hand hurt.

I've been reading so much, I wonder if it is all in my head and self induced.

I need Help! Please tell me what you think? How were you diagnosed?

It's so hard to figure out because they all present similarly. My doctor was 95% sure I had mg! but all the tests were negative. They would like for you to have a positive test for something because some of the treatments are different.
I ended up testing positive for Lems, but they need to eliminate other things, such as ms, als, etc.

It is hard not to think it is in your mind especially when the symptoms wax and wain.

Hi, Elle. I'm sorry you're going through the diagnostic roller coaster, as so many of us have.

Which tests came back negative? AChR antibodies? MuSK antibodies? Did they do anything else?

First of all, quit with the thinking "it's all in my head" BS. It's not. Some people are hypochondriacs, but, come on, do you really think you are?!

Fatigable muscles are the hallmark of MG. And CMS and LEMS. MS tends to have more of a static weakness that can change over time. With MG, it's more of a do this, get weaker situation. With MS, when the nerves get worse, the muscles follow suit.

I'm pretty sure everyone is getting sick of my saying this, but . . . have you had your vitamin B12 checked? It can mimic signs of MS.

If you have MG, you need to be careful to not overdo things. If you tell us where you live, maybe someone can refer you to a good MG expert in your area.

Also, a neuro-ophthalmologist (not a regular ophthalmologist) can assess whether you have fatigable ptosis and try to figure out the cause. Was your eye exam with an N-O or a regular O? ;)

If you feel so weak that you can't move well, breathe well, or can't swallow, that is an emergency, whether you know what is causing it or not! It would be time to dial 911.

Do you have any difficulty breathing?

In what part of your body did your symptoms of weakness begin? How long has it been going on? These "clues" are very important when trying to figure out what is going on. If you can, write down everything you can remember, what is going on and when. Take photos of your face when you are well-rested and then when you are worse, keeping lighting, backdrop, and head tilt consistent.

And if you do have MG, stay out of the hot weather! It can make MG exponentially worse.

Many of us had to go to multiple doctors in order to get a diagnosis. A neuro-ophthalmologist, neurologist (often more than one), pulmonologist, etc. A good neuro will do a thorough clinical exam, order a slew of blood tests (not only the antibodies), and order a RNS, EMG, or SFEMG. And then follow up to discuss all of it!

There are people who test negative to the antibodies who still have MG. LRP4 is another MG antibody, but it is not available yet. They are still finding more! So a negative test does not mean you don't have MG.

You can have more than one thing going on. The common ones for those with autoimmune issues are thyroid, B12, D, other endo issues, celiac disease, gluten sensitivity, and other AIs.

Gluten sensitivity is being shown to cause dementia in the brain, which can lead to all sorts of CNS issues.

So, do your part by journaling what is going on, get a good neurologist to assess you thoroughly, find a N-O to do the same, and have some other basic testing done by your primary doctor. It might take some time, but you need to have this figured out in a timely manner!!!

I hope you can get help soon. Work the system. ;)

Annie

MG
 

Hi Elle114
I am a newbe. This is my first time joining in a response. Hope it works. I do not think you are crazy, as I have most of the same symptoms. My eyelid droops, I am very fatigued, and my legs are so tired they feel like two lead pipes. My blood work was also normal to boardline. Now Neuro Dr. thinks it is neuropothy. I may have a bit of it in my feet and legs but the rest seems to be MG. I am supposed to go for a spinal tap and then ivig is supposed to start at my home after that. I am going for another opinion on Tuesday, to another Neuro Dr. If I am not satisfied I WILL GO to
the University of PA for again another opinion. Try to take care of yourself and get as many opioions as you need to feel sure
Good luck. Talk to you soon.

Hi annie , as I told Ellie, I am a newbe. I am experiencing the same things she is. I have the droopy eye,the extreme exhaustion. I am on Mestinon 3/60mg a day.
I have just seen a small bit of results. I feel a bit better after I take one.
I am afraid of a spinal tap and of ivig. I hope my new second opioion sheads some light on what to do. Hope to talk again

Sande, I'd be afraid of a spinal tap, too. I was offered one a few weeks ago when it was looking like I had herpes zoster encephalitis, but I said NO! I was already on the drug for shingles which would treat the underlying cause of the encephalitis, too, so a test would've been redundant.

Sometimes doctors suggest those tests either to scare a patient they don't think is sick or because thinking is too hard. ;) If you don't want the test, then don't have it. There are ways of diagnosing conditions that involve the least amount of invasive tests possible. Sometimes they're necessary, but is it necessary yet?

I repeated a bit of what I put in Elle's other post, but worth repeating I think.

Have you had other tests to rule out your exhaustion? Were your antibodies positive? Do you like your neurologist?

I still don't know how they can confuse MS and MG. Really. They are two different animals. With MG, you can feel as though a muscle are is "numb" because weak muscles are on the spectrum from to okay to paralysis. No, you won't have paralysis if you have MG! I said it to make a point. And that is why when patients say a muscle feels numb that a doctor might think of MS.

How long have you had symptoms and how long have you been taking Mestinon? If your MG was bad by the time you started drugs, you may take a while to recover. Take it very easy right now, okay? Mestinon does help, but you still have to use common sense and rest to help MG be okay.

Did your doctor go over all of the treatment options?

I hope the next appt. goes well, too!

Annie

I think doctors confuse things, because they have never been in our shoes. Language is important, and too often we have to explain things in a way which fits the doctors "understanding".

In Dutch, there is no good word for ache, which is what I would have described my muscle feeling as, and it was only when I started describing it as "pijn" (pain) that they started to take notice.

And the ophthalmologist, kept referring to blurry vision, when I kept insisting that it was sharp, but double. It just didn't fit with what he had been taught.

Keep going and as Annie says use common sense and rest.

MG
 

[


Thanks Annie-- I have had every test you can think of for MG and Neuropothy My life went downhill with a second cardiac ablation in 2012. At that time dr. says my throid numbers needed to be checked. Went to ENt Dr. Bottom line throid killed with radiation. Then told I had Graves. 2 years pass and bingo I can't even walk down my street much less to Barnagat Bay(1mile). Had caterac surgery, producing a stroke to optic nerve in left eye. Then the droop showed up. Went to eye neuro , she sent me to this Neuro I am with now.
She has been on target, except she has a problem deciding between MG and Neuropathy .
After a final pri cking of my legs she said Neuropathy . I know this sound strange but I now understand a lot about both. I think I have MG.
I will touch base again after my Tuesday second opinion
Thanks for sharing



=AnnieB3;1070064]Sande, I'd be afraid of a spinal tap, too. I was offered one a few weeks ago when it was looking like I had herpes zoster encephalitis, but I said NO! I was already on the drug for shingles which would treat the underlying cause of the encephalitis, too, so a test would've been redundant.

Sometimes doctors suggest those tests either to scare a patient they don't think is sick or because thinking is too hard. ;) If you don't want the test, then don't have it. There are ways of diagnosing conditions that involve the least amount of invasive tests possible. Sometimes they're necessary, but is it necessary yet?

I repeated a bit of what I put in Elle's other post, but worth repeating I think.

Have you had other tests to rule out your exhaustion? Were your antibodies positive? Do you like your neurologist?

I still don't know how they can confuse MS and MG. Really. They are two different animals. With MG, you can feel as though a muscle are is "numb" because weak muscles are on the spectrum from to okay to paralysis. No, you won't have paralysis if you have MG! I said it to make a point. And that is why when patients say a muscle feels numb that a doctor might think of MS.

How long have you had symptoms and how long have you been taking Mestinon? If your MG was bad by the time you started drugs, you may take a while to recover. Take it very easy right now, okay? Mestinon does help, but you still have to use common sense and rest to help MG be okay.

Did your doctor go over all of the treatment options?

I hope the next appt. goes well, too!

Annie[/QUOTE]

Sande, I went to neuro-optomologist at Wills Eye hospital in Philly who recognized the MG and put me on Mestinon. His name was Dr sergott - loved him. He referred me to a neuromuscular speciallist at Jeff who diagnosed me with MG by a single fiber EMG.

I live in Newtown, PA. If you need any info on these doctors let me know. I got in fairly quickly with Dr Sergott when I told them I think I have MG. I had to wait 3 months for the neuromuscular specialist at Jeff.

good luck
kathie

Thanks for all the info
 

Thank you all for all the help. This is all so new and scary when you hear a doctor say "believe MS is possible and would explain it all" for the first time. A few months ago I had never heard of MG. About six months ago's I went to the doctor because I was having headaches daily and migraines about once a week. I felt terrible, like I was hundred years old. My doctor first thought was thyroid. My TSH was 2.9, apparently not high enough for treatment.

Another month, another set of test....lupus, lyme disease, arthritis, ANA test....all negative. Another month, more test, and repeat. This sounds like a common process.

My dr is going to refer me to neuro now. I live in Greenville, SC. The more I read about MG, I don't know what to think. On Friday I was only sitting at my desk and my legs got weaker and weaker, making it a complete struggle to walk to my car. Yet today I walked for several hours without any struggle at all. I don't understand. Sometime it seems the less active I am the worse it gets. That doesn't seem to fit what I have read about MG. My droopy eyelid comes and goes too. Some days it seems like it is almost gone and other days is really bad.

I don't understand it and I don't care if they name it or not. I just don't want to hurt, I want to look and feel normal again. I just want my energy back and facial expressions.

I guess it's more test, but I am going to start tracking symptoms. Maybe that will help solve this. And again thank you all for replying.

The waxing and waning of symptoms is very typical of MG. Symptoms worsen with heat, stress and activity.

let us now how you make out
kathie

Thank you kathie. I just don't know what to think, so I'm trying not to think about it too much. I know the Achr blood test was negative but my droopy eye & tired jaw after chewing half a bagel this morning seem like MG.

One symptom I hadn't seen much of on here is my feet turn blue sometime with just sitting normal. They'll be cold most of the time and tingling sometimes but I have always thought I had bad circulation. If I rub them a while they'll turn normal color again. Does anyone have this problem and could it beasy MG related?

Elle, Your feet turn blue?!!!

That is most definitely not an MG issue. You need to go see your doctor, and probably a cardiologist, ASAP!

Feet turning blue usually means a lack of oxygen getting to them.

Have you mentioned that to any doctor? Hardly matters, you need to figure out what is causing it right away. I'm not saying that to scare you.

If it happens while you are sitting, I have to wonder if it's happening while you're sleeping. What do your feet look like when you first wake up? If you hypoxemia (not enough oxygen) during the day, it could be worse at night.

Take care of yourself, okay?

Annie

Neuro says MG
 

Hi all,
I saw neurologist this week, he dx MG. It was a long 4hr appt but he was very attentive. He tried test on muscle but they had lots of trouble with it (machine) that they finally quit because they had zapped me lots of times. I think that was a EMG test, not sure.

Also I tested negative to Achr test. My vitamin B and D blood work was normal. I haven't any other test for MG.

Dr put me on Mestinon 3x per day. I felt like it improve my eyelid fast, not 100% but a lot better, but this morning it looks droopy again. I definitely have improvement in fatigue though.

The first few pills caused some muscle spasms for about 30 mins or so then stop but that's gone. The mestinon does cause stomach issues but nothing I can't deal with.

My question is, "if" I don't have MG will the mestinon cause any problems?
I should have asked Dr. but it was such a long visit & trying to processes it all.

Elle,

I'm negative on all the tests for MG and was clinically dx'd. At my first follow up apt, my doc asked how everything was and when I said 'so much better I can hardly believe it' she replied:
Well you definitely have MG cause your body couldn't handle that much Mestinon if you didn't.

So I'm assuming that if Mestinon is taken by a healthy person - the overdose symptoms would be exhibited - - and yes too much can be dangerous. But the drug is short acting and does not build in your system..it only lasts about four hours.

So if you have had no (serious) overdose symptoms, I doubt there is anything to be concerned about.

Suev,

How much do you take?

This weekend I decided I didn't have this disease, (it was after reading all about meds used daily for it) and I didn't take the mestinon. Unfortunately I did notice the difference.

I went shopping with my daughter and it didn't take long carrying bags before my arm was so weak, as in dead weak. Also my eyelid was noticeably droopy again. It was early in the morning but still hot out. I felt like my legs did good considering the heat and we walk/stand for several hours.

This disease is so weird, sometimes no strength doing the smallest thing and other times everything is fine.

I sure am moody lately also. I know its the additional stress of going through the dx process but man I'm as unpredictable as this disease. :rolleyes:

I was in semi-denial for a year. I knew I had it but did not want to live my life as if I did. Of course I paid for that with time in the recliner and falls.

The meds help, but they never make you back to pre-MG self, that is not a realistic expectation. they make you better, life is more tolerable with them, and you can function better. Unfortunately, my MG progressed and is beyond deniability now.

I both love and hate the meds.
Hang it there. Life is easier with acceptance and learning to accommodate your MG. I had to accommodate nearly every aspect of my life. But life is still enjoyable, just different.

kathie

Elle,
I take 1 pill (60 mg) every 4 hours ...but sometimes at 3.5 hours if having a bad day. I take one before bedtime and nothing during the night.

Kathie, thanks for this, "The meds help, but they never make you back to pre-MG self" it was something I was wondering and scared to ask. Now, how about giving a % figure to it. Yes I know that everyone is different, but are we talking 70-80% or what? I would just like to know what I am likely to be facing, especially as the diagnosis period seems so long.

When I was early in my disease. i would have periods were I would feel almost normal for a couple weeks and then periods were the MG was evident. At that time at only taking 60 mg 3 or 4 times a day, it brought me back to about 75 % of normal. My eyes did not droop, my voice was normal and I did not trip. i worked a full day of work with ease.

About 18 months ago my MG took a step down. I have not had a normal day in 18 months, even while on prednisone, 2000 mg cellcept and almost 1000 mg of mestinon a day. I now have to take 120 every 3 hours of mestinon. It brings me to about 65% of normal - no falling, no choking and no breathing issue. My MG is stable with all the meds. Fatigue is my biggest enemy now.

I am not the norm. Most MGers symptoms stay much more stable then mine. I have other things going on. I am hypothyroid, anemic and they think I may have lupus too. All these things contribute to my weakness and fatigue so you should not judge by my progression.

You will see that with the summer heat, the mestinon may not work as well. MG is worse in the heat so you may need to work with your doctor to up the meds in the summer and reduce them in the fall.

Conserve your energy. Early in the disease, if I had a good day, I would weed the garden or clean the garage. Too much for an MGer, and then it would take weeks to recover. Pace yourself, even on good days.

good luck
kathie