[Elle114]

Hello, I'm new and looking for some help.

I'll try to keep it short. For the last year have had a list of general various symptoms that, (like most people) I contributed to stress. Fatigue, weak, lack of focus, etc. I started having headaches more frequent and then migraines, so finally went to the doctor. The Dr. thought was thyroid for sure but blood test came back raised TSH but not crazy high. Did more test, but gave me Rx for depression (i didn't fill yet). More test for lupus and ANA blood test, etc. All negative, great but what's wrong.

Frustrated I started looking up my blood test results. That same week, my left eye was drooping. My glasses seemed to hide it mostly but without them it was very noticeable. The general blood test showed that my BUN/creatinine ratio was high. I remembered I had this come back before, so I looked up causes for low creatinine. One of the causes was myasthenia gravis. I'd never heard of that, so I googled it and my heart about stopped when I saw the picture of someone with one droopy eye. Yet even with that and other similar symptoms, I passed it off that it was rare and unlikely but thought it might still be thyroid. Especially because the symptoms come & go (except the headaches).

This week I started getting a sharp pain between my shoulder blades and my left arm felt super heavy. It worried me enough I went to an urgent care. That Dr. said likely a pinched nerve in my shoulder, although he did mention my left arm had reduced strength. (Both of my eyes were droopy and felt like my cheeks were also. I could smile but in a relax position, my cheeks looked flat and droopy and I had terrible frown. Of course I didn't mention this to the urgent care doctor because I was focus on my arm)

The Dr. gave me prednisone and muscle relaxer. I felt terrible with the muscle relaxer, it made me feel worse and stayed in bed & slept. But today I feel great today only taking prednisone. Best I have felt in a long time. My eyes and cheeks aren't droopy and I feel like I have my old energy back.

But the question keeps hanging out there regarding the MG. Since the symptoms are so general, I keep thinking I'm just letting internet doctoring get to me. I'm I being silly? Could I really find this but my Dr. wouldn't? Could use some insight. Does the eye drooping come & go?

I'm a little nervous to ask my doctor about it, since she already thought it was just depression.

[cait24]

I would ask for a referral to a neuromuscular specialist at a large teaching hospital. MG is so rare, most local neuros have never seen it. You seem to have enough of the signs and symptoms to warrant further investigation.

In the mean time, try not to stress, get lots of rest and try to stay out of the heat. Most MGers react badly to muscle relaxers. The prednisone is one of the treatments for MG and should help you.

MG waxes and wanes day to day and hour to hour. The muscle fatigue easily, the more you do, the weaker your muscles get.

I have been diagnosed with MG. I had symptoms coming and going for years that were dismissed as stress, menopause, depression. When I had abdominal surgery 2 years ago, MG hit like a ton of bricks and the doctors were not able to easily dismiss the symptoms any more.

Ask your doctor to run ACHR and MUSK antibody tests, even if they are negative ask for the referrral. There are many antibodies associated with MG and only 2 have commercially available test. There are other specialized test for MG like single fiber EMG and repetitive nerve stimulation.

Good luck
kathie

[AnnieB3]

Hi, Elle. Welcome to the forum!

It's not uncommon for doctors to think of everything BUT MG. It's good that you did some research in an attempt to figure this out.

There are diseases like polymyositis that can case weakness, but it's not fatigable as it is in MG.

Take photos of your face while it's okay, while on Pred. Then take photos when it is worse. Try to keep the same head tilt, lighting, backdrop, etc.

A neuro-ophthalmologist can assess your ptosis and see if it's fatigable (and prove that it is).

Kathie is right about trying to find an MG expert at a University or anywhere else. Some of them are in private practice. If you say where you live (city or state), then someone might be able to refer you to an expert.

How long did the doctor prescribe the Pred for? What dose? Yes, Pred can make MG better. The problem I foresee is that, if you have MG, you can become worse once you go off of it. Your muscles can even be weaker than they were before, so watch for that!

Also, any tests they might want to do, such as the RNS, EMG, or SFEMG, will be affected by Pred, and other MG drugs. You should be off of it well before a test is done, or the test might look normal when it isn't. Don't make changes to the Pred dose/schedule without talking to the prescribing doctor!!!

Are your legs weak? How is your breathing? If you have MG, it normally becomes generalized. It's considered a "head and down" disease, because it usually begins with ptosis/head/neck weakness. Do you have any swallowing issues?

MG can become exponentially worse in the heat. So be careful not to get overheated. Some drugs can make MG worse, too.

Naps are sometimes the first sign that someone has MG. The disease can make you more worn out overall. If your body tells you to nap, then do it. It's the only way to recover strength without drugs.

If you become worse, or can't move well, breathe well, or can't swallow, that's the time for 911. There's something called an MG crisis, where muscles get to the point of potentially being life-threatening. Don't get scared by that! Just be aware that undiagnosed and untreated MGers can be more susceptible to having an MG crisis.

How high was your TSH? Good endos know that most people feel best when their TSH is about 2, or between 1 - 2. It all depends upon the lab's range, too. Many people with MG also have some type of thyroid issue.

You're not being silly! You noticed a change in what your "normal" is, sought out help, and, honestly, didn't get a thorough evaluation. Most doctors, even neurologists, only read a couple of pages on MG in medical school. And we all know how they often pooh-pooh women when they bring up symptoms, or throw drugs at us, as your doctors did.

A muscle relaxer can make MG much worse.

Why do doctors reach for the antidepressant every time a patient has symptoms? Are you depressed? If not, then why do you need a drug for it? And while drugs are often useful, many cases of depression can be managed with coping strategies, talking it over with a psychologist/psychiatrist, etc.

There are other things to be taken into consideration, such as celiac disease, gluten sensitivity, a B12, Vit. D, or other deficiencies, etc. Does anyone else in your family have autoimmune diseases? Are you of Northern European heritage?

Internet doctoring? Did you look at every single thing and though you had it? No. You saw one thing that fit your symptoms. That's being logical. But do keep an open mind, because you have not been completely evaluated yet.

Find a good neurologist/MG expert and get some help. Talk to your primary doctor, because maybe they know a good expert. At least keep them in the loop. I really hope you will find someone to figure this out soon!

Annie

[Elle114]

Thank you for your help. I saw my PCP and mention MG, she immediately said you don't have that. I should have challenged it but didn't. I had a real bad day on sunday & monday, and after going over it with her, she said it sounds like MS. that was pretty scary to hear.

My PCP order the MRI for next Monday. In the meantime I made an eye appointment and the short version, he actually said textbook case of MG!!

He called my PCP while I was still in the office and told her what blood work to order. So now I'll have to wait for the blood work results.

I don't know what to wish for. I don't want MS or MG. Just want to feel better.

[pingpongman]

Hope your PCP sent your blood to Mayo. Takes about 2 weeks to return.
Mike

[suev]

First of all - - welcome! Second - I am very sorry you feel lousy and are going through the diagnostic agony that most here can identify with.

To say not to worry is kind of silly - I know I couldn't turn off the worry when I was where are you now. Just do the best you can to keep the stress levels down as much as you can.

On the bright side - you have two different docs who are taking you (and your symptoms) seriously and they even seem to be communicating effectively! You are actually very lucky....some folks here have waited years to get to this point with even one doctor.

Please keep us posted on your progress toward a diagnosis as you are able...and hang in there!!

[Elle114]

Thank Sue,

The blood test (Achr antibodies) came back negative, not even close to borderline. Again my PCP pushed possibility of MS and said my symptoms overlap MG and MS. I really started to think I must be crazy until the other day I had another bad headache and my eye was barely open. The day before it was much better. For about 3 hours my eye and head hurt, I kept my eye closed (which wasn't that hard to do) with my finger. After the migraine med kicked in, I felt better. My eye also opened up again to were it had been. This has me more worried of course. MRI was moved until late Friday and with the holiday weekend I suspect I won't know anything until Tuesday. Just trying not to think of it but so difficult.

Originally Posted by suev

First of all - - welcome! Second - I am very sorry you feel lousy and are going through the diagnostic agony that most here can identify with.

To say not to worry is kind of silly - I know I couldn't turn off the worry when I was where are you now. Just do the best you can to keep the stress levels down as much as you can.

On the bright side - you have two different docs who are taking you (and your symptoms) seriously and they even seem to be communicating effectively! You are actually very lucky....some folks here have waited years to get to this point with even one doctor.

Please keep us posted on your progress toward a diagnosis as you are able...and hang in there!!

[juliejayne]

That sounds so familiar. My blood test (Achr antibodies) came back negative. The internist didn't want to take it further and suggested that it was all in my mind...(psychiatric). He concluded that as I was in tears I was suffering from burnout. I am terrified of hospitals and am in tears (of terror) every time I have to go to one of these places. Lesson learned though. Next time I shall take a written list of questions, with a bold first line stating... You doctors scare the **** out of me. Hence I am stressed and tearful. But that is not a symptom of my illness!