About a year ago i became very breathless and extremely tired. As I had high blood pressure and an ectopic beat, this was the doctor's explanation for my symptoms, which didn't improve with medication. Then a few months ago, when I was tired my speech would slur. My doctor had me hospitalised as a brain stroke was suspected. The brain scan came back clear, but the slurred speech became worse so that now I am incoherent, not even my husband understands me. I also noticed, at times, I would find even soft food a bit hard to swallow. This continued, then I would start coughing and choking for no reason. Then one night, passing the mirror on the way to bed, I saw my right eye lid had dropped. In the morning it was okay. A few mornings later, I awoke with the right eye lid closed. I prised it open and my vision was blurred. After a few minutes the eye returned to normality. Sometimes my neck aches so bad I can't look upwards. When I was hospitalised, my blood test for just one antibody came back negative for myasthenia. The EMG carried out in my left shoulder, lower arm and hand, plus around the eye area came back normal. The hospital neuro said he didn't know what was wrong with me. Most of my weakness is in my lower legs and back. I have camptocormia and I read that myasthenia precedes camptocormia. I also have hypothyroidism. I went to see one neuro privately and he suggested my symptoms might be pyschomatic if more tests come back negative. This has left me feeling very depressed, as now I think no one believes me. My speech therapist believes me because she said no one can have such severe dysarthria as mine and it be all in the mind. I sleep away most of the day, as I find bed rest alleviates my symptoms. I'm sure the word pyschomatic is printed across my file. I am 75 years of age, why would I want to make things up? I happily married and just want to fully live my remaining years. Thank you for your time. I'm so depressed at not being able to communicate or be understood, having to drink energy foods and not eat solids and feeling so tired all the time.

You have a lot of symptoms that I am not familiar with. However, some I am. The eye drooping, the speech, breathing and tired, are symptoms I have had. I do have MG. Confirmed by blood test. I would try another Neuro. My 1st one missed MG, and tested for everything else. besides there are different types of MG, that do not show up on a standard antibody test.
You will most likely hear from people on this board who have more Medical knowledge than I do. Maybe they can help more.
Good luck and get better
FREDH

By the way, psychosomatic illness, does not mean you are making it up. If you have a psychosomatic illness, you will feel symptoms of problems that are not really there, but they will seem very real to you. It is also a very difficult problem, because you are not aware that your mind is thinking this problem, but the symptoms show up.
I had some problems in my younger days. It is weird.
Also, this can be caused by depression.
Again good luck
FREDH

Hi FredH. Thank you for your replies. I think I had MG ten years ago and went into remission when I was diagnosed with hypothyroidism and took the medication. My doctor was puzzled at the time because she said my supposedly hypo symptoms were very severe and not consistent with my blood test reading which was just borderline. She gave me the thyroxine medication as she said my anti bodies were extremely high. However, my daughter has been ranting and raving at the neurologist and now I have an an appointment for Monday. I'm going to ask him for a trial of the MG medication. My breathing worries me. I'm on oxygen at night, without it I awake every 2 hours, feeling as if I'm being suffocated or if I doze off in the armchair, without oxygen, when I awake I am very dizzy and trembling. My doctor said it is low oxygen levels. I understand your point about physchomatic. But the only reason I'm depressed is because I feel so ill. Not being able to breathe properly, communicate or be understood, or eat solids is upsetting in itself. I've never suffered from depression or any mental illness. Fortunately, the neuro I'm seeing thinks I have some rare neurological disorder like my camptocormia rather than pyschomatic. I've dismissed the private neuro. He obviously is not skilled in MG, few neuros are.

I think you have a good idea to see if the neuro will let you try Mestinon (maybe small doses to start -30 mil twice a day or so) to see if there is improvement. We have had people here try that before, when they have no diagnosis. If you notice improvement, you can expect that you may have more proof of MG.
FREDH

Sounds to me that firing the private neuro was a good thing. Even though they don't see MG that often, it doesn't mean they should not be able to recognize it when a patient walks in with it, or has symptoms which point to a possible diagnosis.
Hopefully the person you are seeing now can help you, or at least help you towards a diagnosis and treatment. If he/she gives you Mestinon, you should hopefully see some positive effects.
Good luck!

My sister-in-law had a lot of the same issues you describe. Originally, they thought mg, but eventually decided it wasn't mg. After several more months of slowly degenerating symptoms, she was diagnosed with ALS (Lou Gehrig's disease). I know that isn't a good diagnosis for anyone, but at least they finally got it right and she was able to get the assistance she needs. As she says, the uncertainly was killing her all by itself. Obviously, I'm not a doctor and am not trying to diagnosis you. I'm simply giving you another direction to look at and research.

You will be in my prayers that you will find the diagnosis and help you need.

Caprice, The neurologist who diagnosed me said, "You only think your legs are weaker because you don't walk on your arms!"

There are diseases that go from the bottom up. Guillain-Barre is one of them. MG is known as a "head and down" disease, because it usually (though not always) starts in the face/neck area.

I agree that you need a new neurologist. I rather doubt that your symptoms are all in your head! What you describe sounds like a combination of fatigable and fixed weakness. I think it's important that a doctor be thorough.

Do you have copies of the MG test results? The EMG? If not, I hope someone will send them to you. Doctors don't always tell patients the whole truth. Sad, yet true.

What I'm concerned about is that you are in really bad shape and probably need to be in a hospital. If you can't move well, breathe well, or swallow, you need to go to the hospital.

They can do tests there. They can check your breathing by checking O2 saturation, doing an arterial blood gases test, and breathing tests. They can do a clinical exam to test for weakness. They can check for double vision. There's so much they can do.

How are you feeling now?

I find it so sad that you are in such bad shape and aren't receiving adequate care. Please find someone to help you, even in an ER.

Annie

Thank you to everyone who replied with support and help. I just can't stop crying. I went to see the neuro today and he said your muscle test was negative so you don't have myasthenia or any neurological disease. I said I can't talk coherently anymore, (he said that could be degenerative dementia) sometimes it's hard to swallow,(he says I am manifesting symptoms) my right eye lid drops, (he says I am manifesting symptoms) I can't breathe (he said that could be anxiety) I said I spend 16 hours a day in bed sleeping. (he ignored that comment). I said I now have breath shudder often ( he ignored that). I said you only tested me for the common antibody and not Musk (found in bulbar symptoms) or tintin (found in elderly people, I'm 75 years of age.). He responded that the antibody test is not reliable and he only uses the EMG test. I am going to have the antibody test done privately. I asked him for the referral letter to go to another hospital that has a myasthenia clinic, which he had promised previously. He refused saying that as I doubted him, it's best for me to get one from my doctor. I asked for steroids, he said no they are dangerous. So he sent me away, no treatment, only my misery condensed dreading what tomorrow will bring healthwise. He might as well said go away and die as you are 75 years old. I do feel suicidal, a thing I have never experienced before, but I can't bear my ill health much longer. The social isolation of not being understood, the extreme tiredness, the struggle to eat food and the constant battle to breathe. My daughter is so shocked she is going to report the neuro to the Medical Council. Meanwhile I will get the antibody test done privately. If it's positive I will go to the Myasthenia Clinic at Southampton for their help. I am getting so weary.

Caprice, For a doctor to have a few negative tests and proclaim that all of your symptoms are all in your head is negligence. A negative test doesn't mean that nothing is wrong with you. It proves nothing. It probably means that they haven't found the correct tests to run.

Plus, if most of your weakness is in your legs, why wasn't an EMG done on the legs? Why wasn't a Single Fiber EMG done?

Do you have any other illnesses or are you on any drugs? I'm asking because some drugs can cause issues as well.

Have you had other tests done such as B12, D, thyroid, CBC, or a comprehensive chem panel?

An MRI was clear. But that doesn't reveal everything! It's good it was, for it rules out things such as MS (usually). Plus, how can you have degenerative dementia when your brain MRI was clear? Do you have a copy of the report? Sometimes they don't tell patients everything.

There is no way any of us can tell what is going on with you. But what I can tell you is that you have not received sufficient care. The conclusions being made are not scientific.

Don't mess around. Go directly to a neuromuscular specialist and ask them to help you. Don't say what you think it is, just say that you weren't sick and then you were. Write down the symptoms and when they began (or have someone else write them down for you). Have someone go with you to the appt. so that they can confirm what you've been through.

You should see a pulmonologist as well. They can clearly define what might be going on with your breathing. They can do breathing tests, test your O2, do an arterial blood gas, etc. They can even do a sleep study or overnight oximetry.

When was the last time you had an ECG of your heart?

If you can see a neuro-ophthalmologist, that would be useful as well.

Don't despair. Unfortunately, many people have gone through a lot of doctoring before receiving adequate help, no matter what is going on with you. I don't know why, but neurologists tend to be some of the most inhospitable doctors.

And if neurologists cannot initially figure out an issue, they do tend to say that a health problem is all in our heads—maybe because so many of them are psychiatrists as well. That is especially done with women. No, that's not my opinion, but a conclusion from experience and research.

A well-known MG expert once said that it takes a year for a man to be diagnosed with MG, but it takes an average of seven years for a woman to be. I tend to think it's not only people with MG who encounter those issues.

There's a lot of prejudice encountered along the way while doctoring. Don't internalize that reality and make yourself even sicker. I'm sorry you are doing so poorly and that a doctor didn't do enough to help you. But there are very good doctors out there, willing to help patients.

Every second someone lives is valuable. Simply because you are 75 does not mean that you deserve less care.

Again, don't say you think you know what is wrong with you. Only focus on the symptoms. You may not have MG and you don't want to lead a doctor down the wrong path or inadvertently make them think you know more than they do! Doctors hate when patients tell them that they think they know what is wrong!

Get some rest. Wake up tomorrow and find some better care. Go to the hospital if you are in bad shape.

Whatever is going on, you need someone to care for you. Probably a bunch of someones.


Annie