[Newbie87]

So i am at a lost of what to do and am wondering if anyone can give me some kind of advice. My symptoms started about a year ago, with severe fatigue and weakness. I went from being a cheer coach very active to getting married and moving and then all of a sudden i could barely lift my legs up. i couldn't get myself off the couch. Couldn't keep my head up. So for the longest time i went to drs and ofcoarse no one knew what it was, some thought i was depressed or anxiety... I am not...it was my body doing it not my mind. so i gave up. At the being of may i began to notice that i was getting super weak after doing little things. Like bringing the laundry down stairs or vaccuming. Id do that and then have to lay down and would even sleep for a few hour before i could even get myself up. Worried but annoyed at the healthcare system i ignored it until things got worst. Chest pain horrendise, like there was a rock sitting on my chest, shortness of breath...walking from the bathroom to the bedroom or up the stairs. Im 22 years old......all i could think of is what is going on. Went to my GP, she confused as every ordered pretty much every lab on the lab sleep. Abnormal one was my ANA 1:640. So i was sent to a rheumatologist to see maybe if it is lupus. No rashies but i guess symptamatically i could fit that. blood test done there should nothing specifically to lupus. My Rheum was convince that it was something more and he was not going to give up. He called me everyday to see how i was doing while starting me on prednisone. He kept saying that my first symptom is weakness and everything else i was experiencing he thought was from me pushing myself to hard as i work 40 plus hrs a week as a medical assistant.
Any who, finally get to see a neurologist, they do an emg in my neck that same day because they are so shocked at how weak i am and said that the numbers were shocking. That after excertion i lost over 70 % of strength and then it would correct itself after i rested ofcoarse. So i was started on Mestinon 60 mg 3 x a day. Love this medication. So as long as i take this medication on the dot it does well and we added timespan for night to help and with just a few hard nights and days things seem to be improving. Last friday i developed a cough, Shortness of breath and the pain in my chest was there more then every. thot maybe i was getting a cold. This week i saw my neuro and she referred me to a pulmonary dr as well as to get some pfts done, she wanted have them done this week and that didn't happen thanks to their lovely office staff. So by tuesday of this week i can't get rid of this "cough" like i am trying to get air in and i can't as well as having a hard time after eating and having coughing attacks. SO i met with my pulmonogist and he was hoping that maybe i was having some post nasal drip and so he prescribed me some antibiotics as well as and inhaler. ( none of which have helped and i have been told to discontinue) So, here i am stuck, feels like i have something caught in my throat as well as every couple breaths i have to take 3 before i can even get a good one in. They upped my pred to 20 mg a day and 40mg everyother day. I am at my witts end. I feel like my drs aren't helping that they leave their office at 5pm and im on my own. in the last 2 weeks i have woke up 3 times out of my sleep like i stopped breathing. the last one happening last night, when i was sleeping on the couch with my husband and he said i was laying there just find and then popped up gasping for air....something is obviously getting worst.... I have looked up several things on IVIG and am wondering if my body just needs a push because before this breathing issue starting i was responding well to mestinon on most days.

sorry this is so long....hope there is someone out there that can help. Thanks in advance!

[art chick]

So sorry to hear that you are going through all of this. . . very scary, especially when things start in on the breathing front. I have had to he hospitalized twice in the last two months for the same reason. The prednisone at 40mg every day with the mestinon just wasn't working for either.

I am concerned that perhaps your pulmonary doctor maybe not understanding the issue with the diaphragm weakness in MG?? I mean you really sound like you are struggling and when I got to that point the ER was where I needed to be. They did the respiratory tests like vital capacity and MIP and MEP every 4 hours and put me on oxygen to make sure I wasn't getting any worse and then they did start IVIG for 5 days and I was off of oxygen within 12 hours. It changed my life!!

Also, sleep apnea is a huge issue in MG and maybe that is an issue if you are waking up like that?? They could check that too.

I really would go to the ER if I were you . . .I hope you get some relief soon.

Please let us know, debra

[Stellatum]

Hi--I always hesitate to give any sort of medical advice because I'm new at this myself, but then all the burden falls on our resident "experts," so here I go anyway. Have you had a CT-scan of your thymus gland??? All patients with suspected MG should have one anyway. I seem to remember someone posting here who said her first symptom was a cough that just wouldn't go away, and it was related to her thymus.

I'm sorry you're so sick, with such scary symptoms. I hope you can find answers and treatment soon.

Abby

[AnnieB3]

Welcome. Do you have an informal name we could call you by?

I'm sorry you have gone through so much so young. MG can be a tough disease but it is manageable. The key to it is maintenance. By that I mean that if you keep it under control, with both medications and by not doing too much, you will be better. It sounds to me that you were already really bad by the time you got diagnosed and, therefore, it may take you a while to recover. It's kind of like the worse you get the longer it takes to get better.

You almost sound like you are close to what is called a myasthenic crisis. It's when you either can't swallow or breathe in or out well (or at all) and have generalized weakness. If you feel like you are that bad off, just like Debra said, you need to call 911 or go to the ER. If it's really bad, call 911. You can't often tell how fast or how bad MG will get.

Are you from a country other than the U.S.? Sometimes that helps to know because health care systems are different around the world.

Some antibiotics can make MG worse. So can an infection or stress and lots of other things. Heat is the number one cause of MG getting worse. DO NOT go out in the heat right now. Stay as cool as you can every day. Not cold, but comfortably coolish.

There's something called an incentive spirometer which some people with MG use when they have a lung infection. It can also make you worse if you use it when you're really bad since MG gets worse with exertion or repetitive activity! A pulmonologist should know about this. Being able to take a full breath in is important. I have had minor atelectasis due to my MG. Don't panic! It's not like the type of lung collapse you see on TV shows. It's a minor collapse of the lung. They can check that with a chest x-ray.

To me, and I'm not a doctor either, it sounds like you need more meds right now. IVIG or plasmapheresis in a hospital setting. You have to take this seriously. You are not breathing well at night. Your pulmy can do an overnight oximetry to see what your O2 saturation is while you sleep. They should've done that already. Have they done an arterial blood gas on you?

Someone with MG can get temporarily worse once Pred is started. When did you start taking it? Did they tell you to take vitamin D and calcium while on it? Flax or fish oil? Are you on anything else?

I think your immediate concern should be really assessing your strength, like the breathing and swallowing and generalized strength of muscles, and get to know when you are bad off. That IS the point where you need an ER. A neuro in an office can't help you, though you can ask the ER to call them. Don't wait if you are that bad. It's not worth risking your life and they may be able to give you more treatments to get you back to your "normal." That's funny to say because you now have a new normal.

People do get better but you need help to do that. You also need to rethink how you do everything, like sitting instead of standing, taking naps, etc. It's a total life makeover really. Get the paper plates so you don't have to do as many dishes, etc. Have a fan blowing on you while you do things to stay cool. Think of it as your own medical action plan.

BTW, you don't have to have a rash to have lupus! An ANA is not a specific test for any disease. Did they run the MG antibodies for you? If not, they should have.

When you feel better, come on back and you can get more info from everyone here. They are great. Abby is being kind but everyone here has something to offer.

I hope you will find the treatments it takes to get better. Again, if you get worse, go in right away!!!

Annie

[Newbie87]

thanks for all the replies all and the info. My name is Kim. I am in the U.S southern C.a so you know the health care system. I do have a confession, and im not sure if it came from becoming a medical assistant or having to go to the er 3 times telling them that i didn't have the flu last year that it was somehting more (i had an appendicitis) I really think twice now before going to the ER. I know that is bad, and i do know my limits and no i will have to go, and i don't want it to get to bad but i just feel like they are not going to do anything for me.... :< Ive slept for most of the day today...nothing has changed, breathing and all is still the same...so im leaning toward it might be close to giving in to my not wanting to go to the ER.

to answer some of the question, I have had a ct done of my thymas and said it was normal, although my neuro said that they wanted to do another one. They did antibody blood work and that came back neg. They are waiting on approval from my ins (which approved it on the 1st) and no one has called me yet. When the pulm put me on antibiotics it was avelox and i took it for one day and they told me to stop cuz they said they didn't feel comfortable with me taking it could do more harm.

Annie- the rheum first thot it was lupus i think because she saw how uncomfy i was and was just trying to find an answer and then she went out of town and i say the other dr and he kept saying he was not convinced. that lupus was just not right. that he really thinks it was Mg ....didn't say this in my early post but all of the symptoms fit it. double vision. weakness. i mean you name it i have it..

My drs kind of just told me i had this and put me on this medication and i think because they might not now much about it they aren't really "on top of things" i feel like im just left out to fend for myself. Like i was on the phone with my neuro yesterday and was in tears by the end of the day (bad day think i overdid myself...look at where i am now) I was so weak that like i hurt...and she just kept saying i don't understand pain isn't assoiciated with this disease! MY response...not very nicely......" yea but have you ever tried to move muscles and things that don't wanna work right....it doesn't feel good....thats all i could explain it as..." like i can't get them to understand... so she said well i can give you some pain med....I don't want pain meds i want you to find outwhy the meds aren't working today as well as they have been and why i am getting worst so we can work with this.... i know this is gonna be a lifestyle change...and as i would like to think i have....id have to admit working 40 plus as an ma (one of the drs work for knows and he makes me lay back a little) is probably to much but i am having a hard time of letting go of the person i was. I mean im 22....married for 2 years.. and now i have to relearn how to live my life. (my hubby is in the marines) i am very thankful for!!! but our closes family is 5 hrs away so we are flying solo on this one....Thanks again everyone for listening and talking....its nice to know that other people know that you are not just making this up...that your body can change on you so fast and there is nothing you can do...but try and get it under control so it doesn't happen net time.

[AnnieB3]

Thanks, Kim, for giving us a name to call you!

Well, pain meds can definitely make MG worse. Here's how you explain the pain. Pain is not a PRIMARY symptom of MG but it is a SECONDARY symptom. When muscles get weak, they can cramp and spasm, just like they do in any athlete. In people with MG, they just do it a lot sooner. DUH!!! I've had my entire trunk go into spasm, which is a huge warning sign that your breathing muscles are about to tank. That was right before my myasthenic crisis.

If they don't do the right tests, they won't know how bad you are. They have to do breathing tests, arterial blood gases, a clinical exam, etc. They can't go by how you look or oxygen saturation while sitting still on a gurney! Oxygen saturation tanks late in the game with MG. They need to see how your O2 saturation is while you are walking.

When you rest and take Mestinon and you are not getting better, that's a big warning sign too. Also if you get a sudden shortness of breath episode where it feels like you can't breathe. Definitely time to go to the ER if that is happening. If you can afford one, an oximeter is a great purchase. I've had my Nonin for five years and it's still working well, even after dropping it several times. Nonin has a less expensive version now called GO2. I liken getting Nonin to deciding on a Honda over a less reliable car. You may pay a little more up front but it pays off in the long run. That way you can track what your "normal" O2 saturation is and what it's like when you get worse.

Have you checked your pulse at all? When MG gets worse and you can't breathe well, the heart first tries to make up for the weak breathing muscles by pumping faster - which I'm sure you know from working in the medical field. After that isn't sufficient, that's when the O2 saturation drops.

Did they do the antibody tests while you were on Pred? That can make them negative when they are really positive. Did they do the MuSK too?

Are you home alone? If so, you really need to be careful. Some people actually pre-record a message to play to 911 in case they can't talk!

I hope you will get better. Maybe do a new post asking for good neuros or an MG expert in your area. It really helps to have a neuro who knows what they are doing.

Take it easy!

Annie

[Newbie87]

thanks annie, I am not home alone, my husband is here. went they did the antibody test which was just recently i had been on the prednisone for just at a month 20mg for a short time then up to 40 then back on 20...could that have made it come back neg? I am waiting for them to do the musk test, just got approved by ins.

I have been noticing spasm in my chest and back. and yes my pulse gets high. and then lowers itself...im watching it carefullly i feel like a ticking time bomb, i really dont want to go to the er to soon ( at this point i don't think is possible but if youve been to this hospital youd know how i feel) I did do my 02 the other day but it was fine...even when i got up and walked around....(don't think i was really excerting myself and it didn't show anything) Neuro did order pft with abg all of that but i don't know if i am being impatient but it just doesn't seem like we are moving fast enough...i want answers...and help..i see patients that are really bad compared to be that come in on oxigen and my goal in life is to help them why i wanted to be in the medical field and i feel like im not getting any help like we will get the test when we get them...

im wondering if getting a pulse ox is a good idea like you have so when i do feel bad i can just start recording them and start taking this into my own hands....so i can go to them and say yea when you did it is okay but when im feeling it at my worst look at my numbers..

[AnnieB3]

I went through doctoring h@!! on my way to being diagnosed with MG, and the ER h@!!, so I know what you mean. That's why being knowledgeable and talking their talk really helps.

Taking photos of an oximeter you have on your hand helps too! Recording readings and photos, then they can't deny the evidence. Maybe with a ring on the same hand so they know it's your hand. I swear, these doctors need solid proof or they don't believe their patients.

As long as you use the oximeter as a useful tool and not in a way that might drive you batty by looking at it all the time, it's a very good idea.

[Newbie87]

had a horrible weekend...still having breathing issues.. i can def tell it is the muscle in my chest and even my throat. Talking, eating, breathing makes my chest so tight and like weighed down...just like my legs feel before i started the mestinon. I went to the er on sat night, and they well did nothing because technically i wasn't in a crisis....the dr told me it looked like i was heading down that road or that it was starting to affect these muscle...but yet nothing was done!!!!! i am so infuriated! and to top it off i called my neuro office to get an appt to go in today and they tell me that they don't have an auth so i will have to wait for that. but they will leave a message for the dr. and yet he still hasn't called back....OMG i know that getting irriated with it doesn't help but im so over this.....Its like they want me to get that bad off before they do anything. I know i am getting enough air...as hard as it is for me to get it i am, its the muscles are so tight and tired.....any help???

[teresakoch]

Call your doctor's office AND your insurance office, and tell them that if you die while waiting for an authorization, your family will sue them for everything they have.....

Seriously, call your doctor's office, find out who you need to talk to at the insurance company, then call that person and talk to them personally. Explain to them what is going on, and tell them that if it isn't taken care of sooner rather than later that things can get really bad really fast. Ask if they can do an emergency authorization so that you can get in to see your doctor ASAP. Time truly is of the essence in your case.

If necessary, ask to speak to the insurance person's supervisor, and THEIR supervisor, etc., until you get to someone who is willing to help you. This isn't something to mess around with, especially since you are close to an MG crisis. It will cost the insurance company a whole lot less if you are able to get this treated NOW, rather than having to be admitted into the hospital.....

And if you aren't getting enough answers from this neurologist, FIND ANOTHER ONE! You are young, and I remember at your age not wanting to be much of a bother, and thinking that doctors knew everything. The truth of the matter is that doctors are human, too. And if you don't find a doctor that you are comfortable with, who will listen to you, and who is willing to work WITH you rather than dictate TO you, then you will not be willing to contact them when you KNOW something is wrong. That can be fatal.

I don't want to scare you, but it is SO VERY IMPORTANT to understand that you are the CONSUMER - you are paying for the doctor's services, and right now the health care industry is still a free market system. You are the one who decides who gets your money. Are you willing to just "settle" for a cell-phone provider, or do you do your research and find the plan that best meets your needs? Be just as diligent in your search for a doctor to help you with your MG issues - it can literally mean the difference between life and death!

I have a daughter your age, and I would give her the very same advice. You have the rest of your life ahead of you, and the sooner you are diagnosed, the earlier you can start treatment (and the better your chances of keeping this from getting even worse). If you and/or your husband can't convince the doctors/insurance company to move quickly, then put your momma on the case. If your mom is anything like me (and every other mom I know), things will get done IN A HURRY - you don't mess with a momma when her baby is in crisis!