A few questions for those of you who have MG
 

Hi I hope I'm not out of line...but I have been limbo land for a year and a half. I have a long boring story but I will give the short version and hopefully someone can offer some insight. I had never heard of MG until I joined this sight for my neuropathy. It sounds very scary.

My questions are:

Do any of you have nerve pain? Like neuropathy?
When you talk about the rest being beneficial to the muscle pain/weakness does it completely take it away? Does it take several hours?
Do you feel well rested in the morning or are you weaker in the morning?
Are doing things like grocery shopping manageable or out of the question?

The reason I am asking is because I started out with a tingle in my calf in the fall of 2011 10 months after my son was born. This has since progressed into bilateral tingling, numbness, and burning pain in my lower legs and feet and occassionally my arms and hands. I have muscle weakness which started in November of 2012 which mainly affects my calf muscles and my feet. Almost immediately upon standing up or walking the lower half of my legs starts to feel numb and the calf muscles ache. So do the arches of my feet. My arms have a real heavy feeling about them and feel as tho I have to think about what I want them to do before they can perform but it seems I can still use them okay. I have an overall lack of coordination and get dizzy upon walking for a short amount of time. I also feel short of breath. For example I can handle no more than 10 minutes of cleaning my house at a time. In the morning I have to walk to the bathroom holding onto the walls for fear I am going to tip over. I also have periodic blurry vision in my left eye, pain in my throat (like a spasm). I get twitches all over but not constant. I have to take breaks when I use my hair dryer because my arms ache to hold them up. I had 2 weeks a while ago where my mouth burned like I had drank scalding hot coffee. I also have trouble thinking of what words I am trying to say or completely forget what I was doing. I am a 25 year old female.

I am currently being looked at for MS as I had a positive finding on my latest brain MRI. But I have to do the whole wait and see what happens thing. From reading I have learned that MS usually presents itself in episodes rather than a constant worsening of symptoms although it is possible.

So I'm wondering if MG is possible and hoping this sounds nothing like it.
I would also like to add that I just recently found out I am deficient in Vitamin D (8). I know this can cause people to feel weak and tired, but this just seems over the top to me.

Thank you so much for ready and any insight would be appreciated. Also for all of you living with this I just want to say I am praying for you all because I have been reading your stories and I cannot believe what a strong group of people are here! It's people and attitudes like yours that help people like me who are stuck and feeling hopeless. God bless everyone and I hope things get better!

I apologize...I think that was the long version.

Hi, and welcome. Many of us here spent a long time in diagnostic limbo, and many are still in it. I spent 15 months there, and I found it the worst place to be. I felt like I could face almost anything but that. How can you emotionally adjust to something when you have no idea what it is? It can really be consuming. So, we understand how you feel, and we hope we can help!

I'm going to try to answer your questions in a really general way. I hope others will chime in.

Most of us don't have nerve pain. That's not a known symptom of myasthenia gravis. Some of us have muscle pain, but many of us (me included) have no pain at all.

Rest is helpful to all of us, I think. I think someone whose symptoms were under good control would have times when they felt normal. On a good day, I have some time when I don't notice any symptoms, though I know if I overdo it, I'll get weak and tired. On a bad day, my arms feel heavy and my neck feels tired all day, and in the evening my legs get very weak.

Most of us feel our best in the morning and get tired and weak in the evening. That's typical for MG, but there are always exceptions. The hallmark of MG is that it causes fatigable weakness: weakness that gets worse with activity and better with rest. MG can cause shortness of breath if the muscles that you use to expand and contract your lungs are weak.

I have good periods and bad periods. During a good period I can grocery shop. During a bad period, I can still go, but I'll be wiped out later in the day. I, personally, zip up and down the stairs all day (I have seven kids!), and tend to get weak in the evenings. Many people with MG hold down full-time jobs. Some go into remission.

Many of your symptoms are not on the list of typical MG symptoms. Tingling, numbness, and burning pain are not myasthenia symptoms. Myasthenia muscle weakness can start anywhere, but it's not common for it to start in the calves and feet.

Dizziness and faintness are not MG symptoms, though MG can throw you off balance. But feeling like things are spinning, or like you're going to pass out, are not MG symptoms.

I hope you get answers soon. Please don't hesitate to ask questions. We don't mind long posts. Hang in there,

Abby

Thanks for this! Are you on medication? I am only asking because you seem to be doing well. 7 kids!!! Wow I don't have enough energy to take care of 1. Nice job!

Well, my youngest is nine!

I'm taking a long-term drug to suppress my over-active immune system. But I'm able to take care of my kids. I'm home-schooling three, running a household of ten, and working part-time from my computer. Sometimes I even cook dinner :) I'm grateful that my life is such that I can rest when I need to.

What is the next step for you? Are you seeing a neurologist?

Abby

Yes I have been for a little over a year. All they have come up with so far is neuropathy. I know there is something else going on though. My brain MRI came back abnormal but with not enough evidence for them to diagnose yet. They just suggested follow up. I am starting on vitamin D supplement and hoping that takes care of all this weakness I am experiencing. Sometimes I have to sit at my counter and cook dinner. It's just too much for me to stand that long. Standing for me is way worse than walking. Weird I know. Lucky for me I am switching to a PPO next month so I am super excited to find a new neuro who doesn't know me already!

I just wanted to interject I have had muscle burning when symptoms have been at their worst, so I do consider that a symptom, just fyi. This may be one of the snowflake symptoms we hear about.

Hi, KTF. Do you have an informal name you'd like to be called?

I have a few thoughts. First, you can always have more than one thing going on. Has anyone checked your Vitamin B12 level? Even at age 25, a deficiency can occur. Or pernicious anemia, which is an autoimmune disease where you can have parietal cell antibodies or instrinsic factor antibodies that attack your stomach. With PA, you don't absorb the B12 and you're also lacking stomach acid.

Has anyone done any basic endocrine tests? There are conditions that might look like they have a neurological source but are something else. Just an example would be dehydration affecting the heart, causing bradycardia or tachycardia. The most obvious thing would be to see a cardiologist but it's usually an endocrinologist who evaluates chronic dehydration (other than from not drinking water!).

Sometimes it helps to have a really good internist who can put other ideas out there, in tandem with a neurologist or other specialists. Do you have one?

Tingles can also be related to the circulatory system. Have you had an EKG done, where 12 wires are hooked up to your chest, arms and legs to see how your heart is doing?

Have they ruled out Guillain-Barre?

And this might be farfetched but what about arsenic poisoning? Arsenic is becoming more common in foods and it can hurt the CNS, as can other heavy metals like mercury.

Everyone here is great at bouncing ideas off of but you really need one or two - or more - good docs to figure it all out. Being in limbo is not fun. I hope you do get it all figured out soon, so that you can have the appropriate treatment.

Annie

Okay and for me that was one of my very first symptoms. I'm not sure it was muscle burning as much as skin burning feeling. Like someone scraping sandpaper on a sunburn. And that was also before any weakness set in. It has gone away somewhat since I have stopped using artificial sweetener. I have been so weak for the past few months I can stand or walk very long at all. I avoid taking my son to the store with me so I can just get in and out and lean on the cart the whole time.:)

Thank you!
 

By B12 is at 589 but I am anemic which I take care of through my diet. I do have issues with digestion which I suffer from GERD but don't take medication as that can negatively affect the nerves. I also have IBS since all this started. I too have tried to think outside the box because my symptoms just don't fit with anything in particular. I have only seen my GP and neurologist. They are not very forthcoming with referrals and ending up being diagnosed with anxiety disorder by my GP and she referred me to a psychologist. I was like yeah I'm anxious of course look at everything happening to me out of nowhere. My psych just talks to me about all my problems and lets me vent about the docs. More like a good friend. I had an EKG which was normal and I occasionally get swelling in my feet if I stand still too long. I thought circulatory as well but I guess nerve pain has nothing to do with that so I am told by the neurologist.
My GP first sent me to the neurologist and she mentioned Guillian Barre but that was the last I heard of it. Wouldn't that progress much faster than mine has? How can I be tested for that? What foods are known to have arsenic? Oh btw my name is Robin. Thanks for your insight I definitely think something is going on with my heart for sure whether related or not. It flutters and skips and has me out of breath from doing almost nothing at all. When I am at rest it is fine mostly.

Thanks, Robin. I have to tell you that 589 isn't great. Right, Mrs. D? ;)

If B12 is not getting to your tissues, other things like homocysteine and methylmalonic acid (blood tests) can be elevated. If you can get your hands on some methylcobalamin sublingual tablets, that would be a very smart thing to do. You might not be getting enough from your diet! Studies have shown that even the meat we consume doesn't have enough B12. I get mine at www.iherb.com and have since 2000, a year after my B12 deficiency. I like the Jarrow Brand, 5 mg. I take it twice a day. It absorbs (under your tongue) itself into the blood stream and bypasses the GI tract. Some people can't absorb B12 well in the GI tract. The liver is where most B12 is stored and released.

Have you been tested for celiac disease? If not, please do! If you have it, antibodies attack your small intestines, decreasing the absorption of vitamins/minerals. The fact that you have a D deficiency and your B12 is not great is another indicator of an absorption issue.

If you can find a good internist instead of a GP, that's a good idea. No, you don't want to keep doctor hopping all over the place but you need someone who is adept at problem solving!

Pretty much any food can have organic arsenic. Recently, more studies have been done showing that rice products and some apple products have more than acceptable levels (see Consumer Reports on that). It's probably a very remote possibility! I think you should focus on possible autoimmune causes.

GERD and a lack of stomach acid can have similar symptoms. Only a gastroenterologist (a good one) can know the difference. A fairly benign "test" of low or no stomach acid is if you feel better having apple cider vinegar (yuck) with a meal. It acts as a mild acid. But talk to a doctor before trying anything, okay?

If you haven't started a log of symptoms, when they started, how often they happen, etc., it's a great way to organize your thoughts and it can be useful for an internist too.

Yeah, G-B is normally a more progressive disease that starts from the legs and moves upwards. My friend had it.

That's a lot to think about. ;)

Thank you so much. I really appreciate you taking the time to go through these things with me. mrsD recommend the B12 to me and I actually have it but haven't taken it. I have the Jarrow brand as well. I go back to my neurologist on 2/12 to review the results from my MRI. It seems to me that it doesn't sound to much like MG to you (maybe I'm just hoping). I will see if my regular doctor can test me for some kind of gluten intolerance although this doesn't run in my family (I don't know if that matters). In any case I will keep you updated and I really appreciate your responses. It gives me some direction.

Robin, I'm sorry if I gave you the impression that I didn't think it was MG! Abby already covered that area, so I went on to figure out your other symptoms that didn't fit MG. Many of them really do fit.

MG is all about fatigable weakness. Do this, get weak. Rest, get better (relatively).

It just sounded like you had more going on that probably needs a doctor who is a critical thinker. Like many of us, we don't just have MG. I have celiac disease, have had a B12 deficiency (unrelated to CD and preceding it by 15 years) and a few other odd little things.

It's dangerous to miss a diagnosis like MG. It's equally dangerous to miss contributing factors like B12 and Vitamin D deficiencies. And those deficiencies are CAUSED by something! So finding the cause of the cause of your symptoms is important too. ;)

For example, I had fatigue from a B12 deficiency. Great, glad that got figured out. But what my doctor should've asked - and I did - was WHY? I got my B12 deficiency because I don't have stomach acid. You need stomach acid to properly digest your food so that your small intestines can absorb the nutrients. So many things in the body are this kind of cascade of reactions.

Some people with MG also have some kind of thyroid disorder.

These guys are so good at outlining things that I often go off in other useful (hopefully) tangents. I'd hate for anyone to miss something while doctoring. It's happened too many times while I was.

:hug:
Annie

BTW, You really can't get too much B12. It's not like B6, which can harm your nerves if you have too much. B12 harms you when you don't have enough! I've had it every single day since 1999.

Hello :hug:

Glad you got lots of responses.
Am rushing off to work right now but about 6 of your symptoms were consistent with what my friend reported when she was diagnosed with celiac disease.....including the tingling, calf muscle symptoms, anaemia etc etc.
Her villi were completely flattened! Another friend shed a whole bunch of symptoms after being diagnosed and altering diet. At the same time she was able to cut out 3 medications she no longer needed soon after this ´small´change.....

Sounds like there´s more though. Good Luck! Don´t give up :)

Anacrusis

I'll answer the questions for you quickly, cause I don't have textbook MG.

Do any of you have nerve pain? Like neuropathy?
Not directly related to the MG (I do have it, due to other autoimmune disease)
When you talk about the rest being beneficial to the muscle pain/weakness does it completely take it away? Does it take several hours?
No, it never took it completely away. At my best, rest (which was at least 1 hour) made a significant difference. At my worst rest was just a way to get through the day. I never experienced the stuff I read in textbooks, like if you rest for a while it will disappear.

Do you feel well rested in the morning or are you weaker in the morning?
Strangly in the mornings. From the start it's like this: wake up weak, around lunch it's better, afternoon is the worst and evening is better.

Are doing things like grocery shopping manageable or out of the question?

For me, at the moment, it's not manageble. But it has been, though I had to use special car, a cane and/or my wheelchair.
But they say it will get better.

Anyway, I'm also a u young woman, and they are testing me for MS still. They think I may have it, besides the MG. My brain mri is "questionable" so it's a possible MS diagnosis. Maybe that's where my absurd fatigue is coming from?

Thank you everybody for your input and advice. Sounds like I still have a long road ahead of me. My GP is tired of me it's so obvious. I know that shouldn't matter to me but I get so upset even having to go see her because I know nothing will be resolved. She just makes me feel like a hypochondriac. I will work on getting to the bottom of this and let you all know what I find out. Best of luck to everyone!!! Thanks for all the responses!

Robin, Good doctors never get sick of patients because it's their JOB and they chose to do it! I think one reason they start acting like patients are a hypochondriac is because if they can't figure something out easily and right away, it means they are a failure. Nope, it just means their creative problem solving skills aren't as good as they could be. But that might explain why they give up so easily and then need someone to blame for their inability to do their job well.

Hang in there.

Annie

You are describing all the symptoms of Chronic Lyme Disease to a T. Also of other tick borne diseases, Bartonella, Babesiosis....you really really need to get tested for those ASAP. Know that the tests are very inaccurate and you have to get the Western Blot, then go to Lyme Forums etc to get some help with it. All that neuropathy is very common as well as everything else you described. It is often misdiagnosed as MS or Guillian Barre. Lesions on the brain which are like the ones with MS are common (my son has three of them.)

www.lymefriends.org
www.ilads.org
www.whatislyme.com

Thanks. I have thought about Lyme also but the only time I know I was bite by a tick was when I was 3 years old and my mom removed it right away. How probable would it be that I would go my whole life so far without any symptoms? I also know that the testing is innacurate which is the main reason I haven't pursued that. I live in Chicago and I don't ever go in or around the woods or anything like that.

A TON of people who have Chronic Lyme and have a lot of issues from it are finding out they were bitten as children, have had it for years, and may have had unexplained symptoms related to it without knowing it. Also, a lot of people have it lay dormant for decades and then it is triggered by a pregnancy, car accident, surgery, or another bite and comes out full force.

Many times we have no idea we were even bitten. Testing is inaccurate, but there is a new test available at Advanced Labs that is more accurate. You can also at least get tested but make sure you get a Western Blot, and review the results yourself. One of the reasons it's so innaccurate is that they don't read them correctly.

So are you saying that chronic lyme disease can cause MG?

It's worth testing for. My symptoms started 10 months postpartum. Where would I get tested? My fear is that if I go to lyme doctor they will tell me I have it even if I don't test positive. I don't want to take any medication that could make me worse.

Just something to keep in mind: one of the antibiotics used to treat Lyme is doxycyline, which is listed as a drug that can cause or worsen symptoms of MG: http://www.mginc.mb.ca/docs/MG_DrugList_Final-1.pdf

That said, I had Lyme a couple of years ago--not chronic, but a case that showed up a week or two after a tick bite (I had a bulls-eye rash, fever, and body aches). I took doxycycline because I didn't know any better, and neither did my internist. It didn't make my MG worse. As far as I know, it cured the Lyme--I was fortunate to catch it right away. I haven't had any fevers or body aches or joint pains since.

Abby