[EnglishSue]

**



Had problems since 2008. Been to so many ologists it's not funny. Diagnosed with Lupus Lyme Disease MS SLE Wegeners Lou Gerigs Vasculitis Psoriatic Arthritis Inflammatory polyarteris giant cell arteritis fibromyalgia chronic inflammatory disease ankylosing spondylitis and kidney cancer. So I should be dead by now, right? Not so fast! LOL. That's what happens when the docs don't know what's wrong with me, they throw a diagnosis out and never follow up with me
One even told me "If it was anything serious you'd be dead by now!". Hard to keep smiling when you hear that, but still. Only ones so far the majority have agreed with is fibromyalgia. Still possibility of lupus. However about a month ago had to go to ER because I was so weak I couldn't stand or walk. Breathing was extremely difficult and speaking next to impossible. Pulse was 106..probably from breathing problem. Pain in chest and shoulderblade.Did chest X ray. Sent me home after 6 hours..no diagnosis. Three days later, same thing. In meantime energy level had been at all time low and breathlessness continued along with weakness. Second ER visit same symptoms. Did another chest X ray cat scan of brain. No diagnosis. Sent home after 6 hours again. Seen ENT doc and speech pathologist since then
Both saw me in 'crisis' mode but other than slight bowing and slight thinning of vocal cords, no diagnosis. Referred me to rheumy and voice doc. Not seen them yet. GP did blood test for myasthenia gravis, just came back negative. Still wants me to see neuro doc..got appointment for two days from now. .impressed! Every day more or less the same...energy/weakness varies, breathing/voice problems come and go. Mostly resting helps. Walking any distance wears me out and affects my breathing..get dizzy or struggling to breath. Legs are wobbly, used to be just right side but now left too. Use cane because I tend to stumble. Need wheelchair when we go out-rarely. Live in the South so humidity makes breathing and walking more difficult. Had wheezing episode the other night which progressed to coughing then vomiting/choking. Life kinda sucks. Need my wage but I'm on short term disability so having financial problems too. Some days it's hard to keep going.

[AnnieB3]

Hi, Sue. Welcome to the forum!

You sound very sad, which is a fairly reasonable reaction to feeling so ill.

It doesn't really amaze me that doctors aren't always good at diagnosing. They often are more "left-brained" and tend not to be creative. And you need to use that right brain, too, while solving problems!

You might have more than one thing wrong. What is silly is that all of the things you describe have very clear guidelines for diagnosis and should be obvious to an expert. If you have all of them, I guess you'll make it into Guinness!

I would have to say that, for me, things went undiagnosed for periods of time instead of misdiagnosed. Both are not a good way to doctor.

If you have MG, the heat makes it MUCH worse. Stay out of it! Have you read about a "myasthenic crisis?" It's where you can't breathe, swallow, or move well and it needs immediate care in an ER (dial 911 if you feel that way). It shouldn't matter if you don't have a diagnosis yet. If you are that bad, go to the ER and tell the ER doctor that you might have it.

Fatigable weakness is the hallmark of MG. It can happen in any of the congenital myasthenic syndromes (genetic disorders that can cause too much or too little acetylcholine) and LEMS (Lambert-Eaton Myasthenic Syndrome).

So far, they have tests for the AChR antibody and the MuSK antibody. Antibody levels fluctuate and do not necessarily reflect the severity of MG! Some doctors don't know that. There are more tests that they can do, such as the Tensilon test, RNS/EMG/Single Fiber EMG. And a GOOD clinical exam should be very revealing.

Also, a neuro-ophthalmologist can check to see if your eye muscles fatigue, if you have double vision (which goes away if you close one eye if you have MG), and can sometimes do a Tensilon test.

A pulmonologist can assess your breathing! And do other things such as check your oxygen saturation and arterial blood gas if you're having trouble breathing, which it sounds as though you are. They can also check out the wheezing you're having, which sounds more like asthma.

Life shouldn't suck! I don't think there's anyone here who can't relate to the way you're feeling. Sometimes you just have to take a step back, call in the cavalry, and get some better help. And, really, you NEED to rest! Don't do anything more than you have to. Don't go out in the hot weather at all.

Right now, you shouldn't be alone, either. I'm not trying to scare you, but, if you have MG, you might need someone to dial 911 for you if you go into a MG crisis. Please take it easy!!

Try to let the doctoring nonsense go. Stress isn't good for you either. The only thing that matters right now is getting the help you need.

Let us know how you're doing! Take care.

Annie

[southblues]

Shortness of breath -- heart failure.

(Second cardiologist said my heart was fine.)

Droopy eyes -- you must be a drunk or on drugs.

Weak legs -- you are insane.

Got so weak I fell down the stairs? -- maybe your spouse attacked you and pushed you.

Weak arms -- insanity.

Can't swallow --insanity.

Think the doctor might be wrong -- you are insane.

You say, ok, you might be insane and want some medicine for that? -- maybe you are not insane....

We will send you for counseling.

Counselor -- you are not insane.

Back to step one.

[imdan]

Originally Posted by EnglishSue

**



Had problems since 2008. Been to so many ologists it's not funny. Diagnosed with Lupus Lyme Disease MS SLE Wegeners Lou Gerigs Vasculitis Psoriatic Arthritis Inflammatory polyarteris giant cell arteritis fibromyalgia chronic inflammatory disease ankylosing spondylitis and kidney cancer. So I should be dead by now, right? Not so fast! LOL. That's what happens when the docs don't know what's wrong with me, they throw a diagnosis out and never follow up with me
One even told me "If it was anything serious you'd be dead by now!". Hard to keep smiling when you hear that, but still. Only ones so far the majority have agreed with is fibromyalgia. Still possibility of lupus. However about a month ago had to go to ER because I was so weak I couldn't stand or walk. Breathing was extremely difficult and speaking next to impossible. Pulse was 106..probably from breathing problem. Pain in chest and shoulderblade.Did chest X ray. Sent me home after 6 hours..no diagnosis. Three days later, same thing. In meantime energy level had been at all time low and breathlessness continued along with weakness. Second ER visit same symptoms. Did another chest X ray cat scan of brain. No diagnosis. Sent home after 6 hours again. Seen ENT doc and speech pathologist since then
Both saw me in 'crisis' mode but other than slight bowing and slight thinning of vocal cords, no diagnosis. Referred me to rheumy and voice doc. Not seen them yet. GP did blood test for myasthenia gravis, just came back negative. Still wants me to see neuro doc..got appointment for two days from now. .impressed! Every day more or less the same...energy/weakness varies, breathing/voice problems come and go. Mostly resting helps. Walking any distance wears me out and affects my breathing..get dizzy or struggling to breath. Legs are wobbly, used to be just right side but now left too. Use cane because I tend to stumble. Need wheelchair when we go out-rarely. Live in the South so humidity makes breathing and walking more difficult. Had wheezing episode the other night which progressed to coughing then vomiting/choking. Life kinda sucks. Need my wage but I'm on short term disability so having financial problems too. Some days it's hard to keep going.

Hello sue, sorry to hear your struggles. As I read your symptoms I couldn't help thinking you are describing me daily. yes I have been diagnosed with MG, but nothing the docs do so far seems to give me relief. I am on verge of crisis right now, waiting on call from doc to go try another procedure. Rituximab.. as I read about it, it sounds scary, but I have become so weak, I don't care...

I too have gotten buried in medical debt.bill collectors call, I just tell them as soon as I get cured I promise to get some kind of job and make payments. I did have funding from a hospital but the docs knew better and brought all kinds of out of network expenses in without notifying me while I was in ICU last trip. But even though I didn't know the bills are mine...So I understand that pain. Again I have gotten to weak to care....

When I sleep its sometimes minutes, but may achieve an hour before waking choking of vomiting, gasping for a breath. this continues 24 hours a day I have learned to stay calm and bend my head a certain way to allow the air to pass through slowly but surly.... oh well it is what it is..

Sometimes i spend days flipping from one side to another, barely able to get up and go to the bathroom, my wife and son try and make me comfortable, but really there is nothing they can do.... I am just to tired to do anything..

This summer, I made my wife take our 13 year old son on vacation. Had her stock the fridge with easy to make food, I survived 10 days on my own.. it actually helped because I didn't feel the guilt of them watching me , a once very strong hard working man deteriorate into something else.. this seeing them have fun, made me happy..

They are now starting to realize this is my reality, and their life is continuing again, for this I get joy and thank God..

As for me I believe in God, I believe Jesus Christ is my lord and savior, I believe there is a purpose for this, and I also believe it is not from me being a sinner, I have truly repented and given my mind, heart and sole to God and pray his will be done....

So in concluding , even if you are not Christian, I will pray for you and ask God that I take your burden even if just for a day, that you may receive wisdom, guidance, strength and health...

Dan

[EnglishSue]

SouthBlues..where are you in GA? I'm in Augusta. You really need to do some calling around and find a neurologist that knows about MG. I often feel I am going insane but I push past that...I don't want to be sick, I want to go back to work because we really need the money.This forum seems pretty good and supportive so I will keep up to date with the members. As I'm off work sitting on my butt all day, feel free to message me for support.

[EnglishSue]

Hi Dan. As I said to previous poster, this forum seems to have so much information from people just like us, I hope you stay on it and keep in touch. Do you have a good neurologist? I truly understand why you sent your family on vacation. I ha e a very loving husband but he's self employed and has his son working for him who is just plain sorry! What is it with this generation. ..they just don't seem to want to work! So he has that stress as well as having to look after me. I have been 'ill' for 8 years but these new (MG?) Symptoms have kept me out of work for 5 weeks now and so I've gone from a useful, independent hard working person to feeling useless and unable to do anything but sit on my butt and worry about money, my health, my husband's business, my job etc. I hope your faith stays strong. I'm on this forum daily just hanging out if you need someone to talk at! Wishing you the very best. Sue.

[EnglishSue]

Saw neurologist today. Did usual neuro tests... balance, pushing, pulling, sharp needle etc. Got appointment for testing on 23rd. He said they will pot two needles next to my eue. Not sure what it's called. Hope it is finally something that gives a result/ diagnosis.