A few years back i was diagnosed with MG and put on Mestonin. Recently i've been having a lot more issues with it as well as other mystery symptoms that now have me wondering if there is some other underlying problem causing it or if i may have the wrong diagnosis. We've done blood work on everything from B12-to checking for thyroid problems, etc and all were in the normal range yet i'm staying so exhausted to the point that i can hardly function now.

That's not typical day after day for a woman who's only 29. Not to mention its taking a huge toll on my mental state and causing much un-needed stress as i'm trying to work and take care of 3 kids and can hardly keep up due to the extreme fatigue. I could sleep all day, take a nap and still would wake up with my eyes burning and feeling exhausted. On top of that out of nowhere i keep breaking out in itchy rashes on my arms, legs, knees and back. I'm loosing a ton of hair and my muscles are continuing to get more and more sore and weak. I'm gaining weight which is not typical for me and due to the extreme fatigue i'm not nearly as active as i'm used to. Any ideas as to what could be causing this or what i should look into. I'm at a loss as to what is causing all of this and just want to feel somewhat normal again so i can enjoy life and enjoy my children

It's possible that the diagnosis was wrong, though it's also possible that you have another disease, side-effects of medication, or worsening of your MG

Do you have positive antibodies? And does mestinon work for you? On what ground did they diagnose MG?
That way you can kind of see if this is a correct diagnosis, especially if you have antibodies.

Are you only taking Mestinon? If so, maybe you need more medicine and it's your MG worsening. Have you been to your neurologist? If not, probably best contact him/her.
Are you taking other medication for your MG besides mestinon? If so, contact your neurologist and let him/her check side-effects related problems specifically.

And another option is indeed that some other problem is causing these symptoms. It's not so easy to find out where to look at, if the blood comes back normal and the symptoms can be caused by anything.
However, some with MG are predisposed to other auto immune diseases like thyroid problems, diabetes, and all kinds of rheumatologist stuff like RA and SLE.
These all tend to give you some of the symptoms like the ones you are experiencing and can be hard to diagnose sometimes.
Maybe see an internist?

I've struggled with MG for about 6-7 years. My symptoms started not long after having my first child. I started getting a lot of muscle weakness. Even holding a cell phone felt like 50lbs and i was terrified of dropping my newborn child since my muscles were just giving out so i ended up moving back home with my parents till things calmed back down. I woke up one day and my right eye was dropping really bad. I went to the hospital and they first thought it was an allergic reaction to something or a spider bite. The day after the eye dropping is when my muscles started acting up. First in my arms then later in my legs. My arms get my at my elbows to my shoulders and my legs are from my knees up to my thighs. It got better a few days later. Then exactly a week later my eye started drooping again, then my arms and legs started to getting very weak and sore again. That's when they started running test for MS but they didn't see any lesions. So they ruled that out at the time. Not long after that i lost my insurance so i had to wait a few years later to finally get the right testing down and get a diagnosis. Mestinon is the only medication my neurologist has ever put me on. I was put on that about 3 or 4 years ago. I've called him in the past to let him know that my symptoms were starting to get worse and he said he doesn't like to put me on anything other than that at this time do to all the side effects of stronger medications. years ago he did a Repetitive Nerve Stimulation (I think that's what its called) I had to go the hospital for a few hours and they used an electric shock type of thing to different nerves to see how quickly my muscles would weaken. I'm in the mist of trying to find a neurologist since i've recently relocated. My regular doctor just did blood work to check my thyroid due to my extreme fatigue, hair loss, weight gain, etc and those came back in a normal range. Its def aggravating because a lot of the symptoms are vague and can be a sign of multiple things.

Hi, Jenny.

What was the B12 level? Don't accept "normal" as an answer. Your body can be deficient, especially with symptoms, even if the number is in the normal range.

And some people have a MTHFR mutation whereby they need methylcobalamin B12 (instead of cyanocobalamin B12) in order for their tissues to use the B12. In those cases, the body (liver) doesn't convert the cyano into methyl.

Have you consulted with an endocrinologist? It's not only the thyroid that can cause fatigue! The adrenal glands can, too. So can MG.

Did you get your Vit. D checked?

If you say where you're located, someone here might be able to recommend a neuro for you!

What else can we help with?

I'm sorry you aren't doing well. You probably have something else going on, in addition to the MG. Hang in there and try to get doctors to help you!

Annie

Jenny • I agree with Annie that 'normal' is not the answer; 'normal' does not mean 'optimal'. You may be hypothyroid. I personally am experiencing major hair loss, serious fatigue, am colder than most people, lots of hypothyroid symptoms. There is a wonderful book called Stop the Thyroid Madness and*admin edit* which you might find useful. I have both MG and Hashimoto's thyroiditis and have been looking for solutions for a while now and am hopeful that at some point I'll be 'symptom free'. It's definitely a long, slow process. But take heart ... there are many, many people going through the same health issues and who are more than willing to share their experiences with you.

I'm located in xenia, Ohio. My family doctor and i agreed to removing my nexplanon implant that i had for birth control because we noticed my overall health seemed to have gone drastically a few months ago when i had that implanted in my arm. Within a day i already noticed my energy level coming back up and hormones going back to normal which has helped with my muscles. My hormones were a mess while on that which would have me so stressed out and exhausted. Next thing you know my muscles would be a mess as well. She is suppose to call me within the week with a referel to a neurologest. She did say today the my RDW was high but my other levels were "Normal". She is going to do more blood work again next month and if its high she wants me to see a hemotogist? Anyone know of any causes for a high RDW count?

Elevated RDW is related to elevated MCV (mean corpuscular volume). This is an indicator for low B12 status. This should be tested and the new low is 400pg/ml.(labs will report values below 400, and still doctors think that is "normal"...so you should get the numbers for yourself to keep) Methylcobalamin is what you need to take --- shots from the doctor are cyano form which is inferior. Elevated MCV precedes frank anemia signs in other test values.

My last blood work was in Jan. They are planning to do it all over again next month to see if any changes...

Component Standard Range Your Value
Vitamin B-12 211 - 911 pg/mL 363
Folate 3.10 - 17.50 ng/mL 9.96

Component Standard Range Your Value
WBC 4.0 - 11.0 K/uL 6.7
RBC 4.00 - 5.20 M/uL 4.88
Hemoglobin Quant 12.0 - 16.0 g/dL 13.5
Hematocrit 36.0 - 48.0 % 41.1
MCV 80.0 - 100.0 fL 84.4
MCH 26.0 - 34.0 pg 27.7
MCHC 31.0 - 36.0 g/dL 32.8
RDW 12.4 - 15.4 % 15.5
Platelet Count 135 - 450 K/uL 204
MPV 5.0 - 10.5 fL 8.6

T3, Free 2.3 - 4.2 pg/mL 3.0
T4 Free 0.9 - 1.8 ng/ml 1.0
TSH 0.27 - 4.20 uIU/mL 1.25

Jenny, You are B12 deficient! I know what that feels like, for my level was 101 when I was finally diagnosed.

Find yourself some good quality methylcobalamin B12. I personally like the Jarrow Formula brand (5. mg.). Take at least two tablets a day!

They might want to run the intrinsic factor and parietal cell antibodies to make sure you don't have pernicious anemia.

It takes as long as you've been deficient (B12 not getting to your tissues) to heal the peripheral nerves. Any fatigue should be better fairly quickly (1 - 4 weeks, depending upon how long you've been deficient).

You need B12 to make acetylcholine, so a deficiency will affect MG, too!

Some of your other symptoms sound a little like celiac disease or lupus. Has a dermatologist looked at the rash you're having? A rheumatologist? Does the sun bring the rash on or is it maybe food related?

So many of us have more than one autoimmune disease.

I don't see vitamin D on the list of tests. They should do that one, too!

I hope you will get the B12 and see what symptoms are better. It might not be the answer to everything, but you need it, and probably forever!!

Annie

Just had new blood work done...
WBC 4.0 - 11.0 K/uL 5.6
RBC 4.00 - 5.20 M/uL 4.69
Hemoglobin Quant 12.0 - 16.0 g/dL 14.3
Hematocrit 36.0 - 48.0 % 42.1
MCV 80.0 - 100.0 fL 89.9
MCH 26.0 - 34.0 pg 30.5
MCHC 31.0 - 36.0 g/dL 33.9
RDW 12.4 - 15.4 % 13.5
Platelet Count 135 - 450 K/uL 170
MPV 5.0 - 10.5 fL 9.0
Neutrophils Relative 53.9
Lymphocyte % 35.4
Monocytes Relative 5.1
Eosinophils Relative Percent 5.3
Basophils Relative 0.3
Neutrophils Absolute 1.7 - 7.7 K/uL 3.0
Lymphocytes Absolute 1.0 - 5.1 K/uL 2.0
Monocytes Absolute 0.0 - 1.3 K/uL 0.3
Eosinophils Absolute 0.0 - 0.6 K/uL 0.3
Basophils Absolute 0.0 - 0.2 K/uL 0.0