[Tracy9]

Really sick; can't get out of bed, move, sleeping all the time. Missed my appt with neuro yesterday becuase medical taxi computer system went down and they lost all thier appts. Coudln't freaking believe it. Called him and told him how bad off I was, he sent me to hospital. CAlled ambulance, heart rate was 140 when ambulance got there and O2 sats were low. Hospital not too helpful but at least this one herad of the disease.

They did spirometry? kind of pulmonary test, just that one, and sent me home based solely on that. They said it's a good test and can predict if you are going to crash or not. Whole time in ER I couldn't walk unassisted, couldn't get my shirt off on my own for johnnie, etc. They did not do any blood gases. Some blood work but no idea what, urine test. Had me count only got to ten. Could not squeeze fingers well, etc. When they d/c me they told me to go to waiting room well it was a loooong walk. I had no idea. I thought I was going to collapse. My legs were full on shaking, kept falling into wall, wobbling, almost in tears, thought I'd just sit on the floor, long hall and no one around as it was 3 am. When I got near the end no one offered me help; they must have thought I was a drunk. It took me forever to reach the smelly couch in the waiting room. I thought, this is my LOWEST POINT EVER. Not one person offered me assistance though clearly I could barely walk.


The ER gave me a month supply of Mestinon, 3 times a day. Now if it helps you in the short run, do you take it before bed? What would be the benefit of taking it while you are sleeping? I took one before bed and two today and no improvement at all. I am TOASTED. I can't stay awake, still every part of my body is extremely weak beyond belief and all I want to do is sleep. I don't have the strength to open a water bottle or lift my laptop.

Is it every 8 hours if 3 times a day? Or 3 times throughout your waking hours? I have to reschedule with neuro but also got an appt with MDA clinic ready to be scheduled now, I think. I think my neuro is sending them all his records so I'll be good to go. He is moving to CA so I need to find all new providers, and it looks like a good place at New Britain Specialty Hospital with a whole MG clinic, 2 docs and services there.


I am so discouraged that the ERs are clueless. I feel unsafe and hopeless that I have nowhere to turn when in bad shape. The ambulance gave me oxygen and it helped IMMENSELY. I wish I had that at home. I asked for it in the ER and they never got around to giving it to me. Does it help any of you? I wonder if I can get that at home. What a huge help that was.


No one in the ambulance had ever heard of MG, neuro in the hospital had but they said if they admitted me all they could do was give me a dose of IVIG and that was it. They said once I just rested the weakness would resolve. What? All I do is rest. It doesn't resolve with rest at all!!! What is wrong with me? I'm always weak and can't even get up alone. I have IVIG Mon and Tues but we are expecting another huge storm Tuesday. I missed it this week because I was far too weak to travel to get there. That sucks, I never ever miss IVIG.


This is scary....no one gets it. I even brought in an article on MG that Annie posted and they all read it and said it was very helpful.

So that's what's up. I'm completely weak today, in pain, exhausted. I can count to ten. Need to call neuro and reschedule on Monday. I was up all night in ER so slept all day and I've been ready to go back to sleep ever since I woke up. Any help about the medication or insight would be much appreciated.

[AnnieB3]

Wow, Tracy. No arterial blood gas? They didn't admit you? They really don't know what they are doing. And rest some and you'll be fine? Yeah, right.

Do you mind me asking where you live? Is it CT? Maybe someone can refer you to a neuro who does know what's up.

I don't feel right giving any drug advice. What dose of Mestinon did they say to take? 30 mg.? 60?

There are two things to adjust with Mestinon: Dose amount and dose frequency. Since they said to only take it three times a day, if you take it more often, you'll run out sooner than one month. You need to call your neuro and have him direct you! If 60 mg. of Mestinon is like taking water, then he needs to discuss taking it every four hours four times a day or more, for example. Dosing is different for everyone. And more (a higher dose) is not always better.

Until you get used to the drug, you may need to be on smaller doses but maybe more frequently. Again, don't make changes without speaking to your neuro.

I'm sorry it went so bad again. I think a conversation with someone in charge over there would be a good idea. Maybe give them some info on MG. Sometimes that may not go well, though but you do need care that is better than what you got. And IVIG is NOT what is usually given in a crisis or near crisis. It's oxygen, bi-pap or plasmapheresis. IVIG is sometimes given but not usually due to the chance of side effects.

Taking Mestinon before bedtime is a good idea. If you are tolerating it fine, then it will help recover some muscle weakness. I wake up in the middle of the night to take it. My body "knows" when it runs out.

Are you seeing your neuro on Monday? They can squeeze you in, you know. You have to grease the wheels and make it happen. Like I said before, you have to not do anything at all until you get more help. It may take awhile for your body to improve on Mestinon. It's been a long time since you had sufficient amounts of acetylcholine.

Don't wait for people in an ER to offer you anything. You have to DEMAND a wheelchair and someone to wheel you around. You have to DEMAND oxygen. How low was your O2? You seriously have to be assertive about your care. Really sad but true. Say "I can't walk." Say "I can't breathe." You have to define your situation in very stark, simple terms.

I think you need to look at home IVIG. Maybe subcutaneous IVIG that you can do yourself. A nurse comes to your home to show you how to do it. Then you won't have to go out!

And you may be so bad off that they have to consider immunosuppression like Cellcept or Imuran.

I wish I could do more for you. It's very scary to be so bad off. You have to stop doing anything. I hope you get better on the Mestinon.

Annie

[tysondouglass]

Hey Tracy- sorry your dealing with this part of your MG. For some patients who have a more difficult strain of mg to treat, this road is something often traveled. Last year this was every month for me- and I was at UNC- dr. Howard works here and is the leading MG speacialist. He would not agree to see me because I was 17 and he works with only adults.

The oxygen does help me- I don't know if it's because of nervousness due to everything going on or what.


If you rest all day tomorrow too- go back to the er or make sure your neuro knows. Even though it is a Saturday. This could mean your body is not resting up adequately and is turning towards a crisis, espspecially if u can only count a little past 10. My neuro said to go to the er if it was below 20.



Good luck and please dont hesitate to ask questions about going in. I'll check back reguraly today to make sure you have no questions or if u do I'll answer them to the best of my ability (just because I went to the er 6+ times in less than 4 months due to exaturbations I had to have help of plasmaphereisis to get stronger.


-Tyson

Originally Posted by Tracy9

Really sick; can't get out of bed, move, sleeping all the time. Missed my appt with neuro yesterday becuase medical taxi computer system went down and they lost all thier appts. Coudln't freaking believe it. Called him and told him how bad off I was, he sent me to hospital. CAlled ambulance, heart rate was 140 when ambulance got there and O2 sats were low. Hospital not too helpful but at least this one herad of the disease.

They did spirometry? kind of pulmonary test, just that one, and sent me home based solely on that. They said it's a good test and can predict if you are going to crash or not. Whole time in ER I couldn't walk unassisted, couldn't get my shirt off on my own for johnnie, etc. They did not do any blood gases. Some blood work but no idea what, urine test. Had me count only got to ten. Could not squeeze fingers well, etc. When they d/c me they told me to go to waiting room well it was a loooong walk. I had no idea. I thought I was going to collapse. My legs were full on shaking, kept falling into wall, wobbling, almost in tears, thought I'd just sit on the floor, long hall and no one around as it was 3 am. When I got near the end no one offered me help; they must have thought I was a drunk. It took me forever to reach the smelly couch in the waiting room. I thought, this is my LOWEST POINT EVER. Not one person offered me assistance though clearly I could barely walk.


The ER gave me a month supply of Mestinon, 3 times a day. Now if it helps you in the short run, do you take it before bed? What would be the benefit of taking it while you are sleeping? I took one before bed and two today and no improvement at all. I am TOASTED. I can't stay awake, still every part of my body is extremely weak beyond belief and all I want to do is sleep. I don't have the strength to open a water bottle or lift my laptop.

Is it every 8 hours if 3 times a day? Or 3 times throughout your waking hours? I have to reschedule with neuro but also got an appt with MDA clinic ready to be scheduled now, I think. I think my neuro is sending them all his records so I'll be good to go. He is moving to CA so I need to find all new providers, and it looks like a good place at New Britain Specialty Hospital with a whole MG clinic, 2 docs and services there.


I am so discouraged that the ERs are clueless. I feel unsafe and hopeless that I have nowhere to turn when in bad shape. The ambulance gave me oxygen and it helped IMMENSELY. I wish I had that at home. I asked for it in the ER and they never got around to giving it to me. Does it help any of you? I wonder if I can get that at home. What a huge help that was.


No one in the ambulance had ever heard of MG, neuro in the hospital had but they said if they admitted me all they could do was give me a dose of IVIG and that was it. They said once I just rested the weakness would resolve. What? All I do is rest. It doesn't resolve with rest at all!!! What is wrong with me? I'm always weak and can't even get up alone. I have IVIG Mon and Tues but we are expecting another huge storm Tuesday. I missed it this week because I was far too weak to travel to get there. That sucks, I never ever miss IVIG.


This is scary....no one gets it. I even brought in an article on MG that Annie posted and they all read it and said it was very helpful.

So that's what's up. I'm completely weak today, in pain, exhausted. I can count to ten. Need to call neuro and reschedule on Monday. I was up all night in ER so slept all day and I've been ready to go back to sleep ever since I woke up. Any help about the medication or insight would be much appreciated.

[alice md]

I just had a discussion with my husband about what it means "life threatening"

I explained to him that the whole idea of modern medicine is to be able to recognize signs that put someone in danger. you don't wait until they actually die or have irreversible damage. you can rely on historical controls who were not treated and what their outcome was. and any situation in which there is a chance of mortality of significant morbidity which is above 10% requires emergent intervention. this is what ERs are for!

Also, each sub-specialty has its own data base and knowledge. I reminded him of how one of my patients came to the ER with fever, and I had to call the resident a few times to make him understand that for a patient with chronic leukemia this is an EMERGENCY. before I called they treated him as just another patient with fever, even though they knew his medical history and saw the results of his blood tests. He was hemodynamically stable, alert and oriented so not someone they triaged on the top of their list. they didn't realize that such an immunocompromised patient could crash within hours if not treated adequately, even if he lacks any ominous signs of a severe infection.

Significant respiratory difficulties in a patient with MG are a similar emergency and sending a patient home like that, without making sure that they have adequate follow-up and care is irresponsible and shows of lack of knowledge of those involved. I am not blaming the ER residents for not knowing enough about a rare illness they don't often see, but the neurologist should have been much more involved, asking for the results of tests and making sure that proper management is instituted. just like I was involved with my patient.

I think you need to urgently find a neuorlogist who has a good understanding of this illness, and sees it as his responsibility to ensure your care in the ER, and not leave it up to them to make such decisions. It may also be a good idea to find a pulmonologist with a good understanding in neuromuscular diseases. the criteria used to assess respiratory status in the common disease they see in the ER on a daily basis (such as asthma, pneumonia, COPD) are very different then those used to assess the respiratory status of patients with neuromuscular diseases.

when I was a medical resident I was scolded by the attending in the ICU for failing to recognize the respiratory deterioration of a patient with neuromuscular disease. He explained to me that such patients may not look distressed and can have normal values of blood gases and even some respiratory parameters until very late in the game. and it is imperative to repeatedly measure their respiratory reserve.

(I did not know then that this physician, and this knowledge will someday save my life. but, this is another story).

bottom line, from what you say, it does not seem you should trust their medical judgement at this point. giving advice like that in an internet forum is very hard, and I may be wrong, but I think you have to keep on fighting to be seen by someone who really knows this illness and its various manifestations.

[DesertFlower]

Tracy, I hope you are feeling better soon.

By the time I was prescribed Mestinon I was in the same shape as you, sleeping most of the day and barely able to move...it took about a week to see improvement from the Mestinon, but once it started helping the change was amazing and at some point after I improved, I had to decrease my initial dose. I hope the Mestinon helps soon, but be patient, I suspect that Mestinon takes a little longer to start helping when your symptoms are severe.

And always remember that too much Mestinon is just as bad (worse in my opinion) that not enough.

Definitely talk to your doctor about dosage.

Thinking of you.

[sugrkiss]

Tracy,

You need to go back to the ER. You cannot be alone right now. Do not let them brush you off. Ask for a patient advocate...As for the Mestinon, it's very easy to OD on it, but I think your best bet is to get a pill cutter and try adding a quarter of a pill an hour until you start to feel a little relief. Maybe up to a total of two pills (one full, and a quarter, plus a quarter an hour later) A quarter of a pill makes a huuuuge difference for me. I take 2 timespan mestinons about 7-8 hours apart, first one upon waking. I supplement with a quarter (lately I'm up to a half pill every hour to 30 minutes) of the quick release (60mg tabs) whenever the weakness sets in throughout...My normal weakness is upon exertion, so if I feel the heaviness start to set in while resting I know it's time for a boost. I have taken control of my dosing of my quick release because I know what overdosing feels like (qick heaviness through whole body within 20 minutes of taking pills, with excess mucus in chest and saliva in mouth) moving helps it fade if you do overdo it, or lots of water. Please get yourself help...Also do you have someone that can call your ins and ask for someone that can act as a contact...(they will help you get fast approval for referrals, override for coverage to stay in the hospital, rides social services help...I was set up with one when I was diagnosed. My ins company called and offered me one...I cant remember what it's called, but they are your front line help in dealing with the red tape thru your ins co.) I hope this finds you strong. my email is sugrkiss@hotmail.com and I can give you my number if you need ot talk.

Jessica

[Tracy9]

Wow, thanks everyone....I'm pretty much still in the same shape, can count to 10 or 11, but now I can hold my right arm up for a while and close my right hand all the way a time or two before it tires. That's about it. I slept until 6:30 pm and thought I was waking up really early and it wasn't light out yet.

The one thing that helped so much was the oxygen in the ambulance, I asked for it in the ER and said I couldn't breathe but she never got around to getting it for me. That walk out to the waiting room about near killed me. I'd have asked for a wheelchair but by the time I'd rounded the corner and saw the long hallway, I was about halfway in between, so I just kept going. When I got home and got out of the truck my legs just gave right out and I fell right into the snow.

I guess I was hoping the Mestonin was miraculously going to kick right in, but no so. Still exhausting to type, walk down stairs, still off balance, just a little increased strength in my right arm. I'm relieved to hear it can take a while.

I woke up many. many times during the night unable to breathe; it felt like a sleep apnea thing and was very scary and much more than I normally have. What do you make of that? Also woke up with drooling and mouth full of saliva. The sheer number of times I woke up not breathing scared me a lot.

I don't know what to do. Do I hospital hop?

[AnnieB3]

Yeah, hop to a GOOD hospital but do it via an ambulance. They will give you O2 in the ambulance and then continue that into the hospital. Plus, they will start an IV line in case then need to do the IVIG you didn't get this past week.

You can't drive. Period. If your health ins. pays for an ambulance, just dial 911. That may be the only way they take you seriously.

They can call your neuro from the hospital. AND you can go over the fact that Mestinon isn't quite working yet and that you need more help.

Ditto on what everyone said.

They also need to monitor your heart and O2 saturation, possibly overnight. I will bet you money that your O2 saturation is dropping while you sleep. That is a DANGEROUS situation if it drops too low. Mine dropped to 66% during my crisis and I only slept for about a half an hour when they checked it during a "mini sleep study." Hypoxemia (low O2) literally damages tissues like your brain and heart.

And get those arterial blood gases (ABG) and FULL pulmonary function tests done, with MIP and MEP!!! But only after you feel better because just doing those tests (PFT's did, not ABG's!) during my MG crisis wiped me out. And breathing in or out hard can stress out your heart. A lack of oxygen is really hard on the brain and heart.

I hope you will get help. They need to admit you and take care of you until you are BETTER. This is such stupid doctoring I can hardly believe it.

Hang in there!!! You WILL get better with the right help.


Annie

[craftyRCC]

Tracy,

I hope by now you' re on your way back to the ER! Maybe then you will be able to get a better handle on your Mestinon dose.

Hope things get figured out soon!

Rachel

[Tracy9]

NO I'm not on my way, I think my husband will kill me if I ask him to take me. I should have called the damned neurologist before it got too late. I have IVIG Mon and Tues so it's just one more day to get through until that....I guess I can call neuro but it's almost midnight.