[BARBARA356]

Hi It has been a long time since I have posted. I am not sure if this is a part of myasthenia, all I want to do is sleep. I have no energy. I could stay in bed all day if my family let me. I know that muscle weakness is all I hear about with this disorder. I just don't know about this feeling that someone sacked the blood out of me. The only medicine I take now is 7.5 MG of methotrexate once a week. My life is not the same. I don't have the energy to do any housework hardly. I have been on methotrexate for 3 years now. My neuro doesn't think that this is related to mg.

[mimc]

What do you take MTX for? MTX itself can cause fatigue

[BARBARA356]

My Neuro is giving me this for my myasthenia.

[Juanitad]

I can't think of anyone else who is taking this drug for mg. Why is the neuro using methotrexate instead of cellcept or Imuran? Just a question.

[AnnieB3]

Barbara, What have your labs been like lately, such as a CBC?

Methotrexate is given to some patients, but it's not very common. I'd be interested to know why they went that route, too. Do you have any inflammatory conditions, such as lupus or arthritis?

Have you had a peripheral blood smear, so that they look at what your cells are up to?

What about a B12 test, or thyroid ones? Do you get enough folic acid?

Have you had a morning, fasting cortisol test?

Fatigue has a lot of causes and might take some time to figure out, but it should be figured out! Some are simple to fix (B12) and others aren't (anemia), especially while on Methotrexate.

If you have a good internist, go see them and ask for their advice.

Fatigue isn't normal, no matter what the cause.

Annie

[StephC]

Originally Posted by BARBARA356

Hi It has been a long time since I have posted. I am not sure if this is a part of myasthenia, all I want to do is sleep. I have no energy. I could stay in bed all day if my family let me. I know that muscle weakness is all I hear about with this disorder. I just don't know about this feeling that someone sacked the blood out of me. The only medicine I take now is 7.5 MG of methotrexate once a week. My life is not the same. I don't have the energy to do any housework hardly. I have been on methotrexate for 3 years now. My neuro doesn't think that this is related to mg.

or perhaps sleep apnea? I recently noticed I was sleeping much much more than normal and felt and you describe. when I complained to neuro he suggested cpap needed to be revisited and such enough he was right.

[BARBARA356]

I have tried Imuran and the other drug for mg. They started affecting my liver so he said for me to try this drug, Methotrexate. Do you think this is too much to be taking. I realize this is a type of chemo drug. I was diagnosed with sleep apnea 10 years ago. I went from a cap then later needed a bipap. This past year, I felt poorly decided to go to have another sleep study done. This Dr told me I did not have enough apnea to use a machine. I went and had a second study done and he said the same thing. Thanks for trying to help. I don't feel like I have a good neuro but they tell me he is supposed to be a specialist in MG

[AnnieB3]

Is he a specialist in all specialties?

At least get an opinion from an internist. Or an endocrinologist. Or a pulmonologist (who is a sleep expert).

[BARBARA356]

I think I am going to see a another dr. Thank you.

[simplelife15]

Fatigue was one of my main symptoms (along with shortness of breath) before I was diagnosed and started on meds. Those still are the two that are the worst on my bad days.

I was late-pregnancy/post-partum when all of my symptoms really hit in the beginning, so everyone kept telling me it was because I had a toddler and new baby, and I should just take more naps.

But to me it felt like a very different type of fatigue and when I started going to doctors I made sure to explain it this way: I'm not tired. If I lay down I don't sleep for more than a few minutes, and I sleep just fine at night. It's more like full bodily fatigue where I just don't have energy anywhere in my body to make it get up and go. If I lay down for awhile I can recharge the battery to get a short burst to accomplish a little something when I do get up, but the battery drains quickly and I'm back to where I started.