[Tracy9]

I can't talk normally! Suddenly I am talking like I have a speech impediment, and my tongue seems to just want to lay flat and not curl at all. This is freaking me out and I don't freak out easily!

My words are coming out funny. I just had overdone it. I am bedridden and so weak I can't do much of anything. I took a shower and did some stuff for about an hour which is unheard of. I was shaking all over and my neck felt like it couldnt' hold my head up a second longer. Then I asked my husband for clean pillowcases to lay down and the words wouldn't come out right!

I am on Mestinon now, 60 mg every four hours. It is helping very minimally. I am still not able to do much of anything but there is a little improvement where I can walk and actually can take a shower unassisted now, but I'm still totally exhausted afterward. I can take my own shower though, but I have to use a shower seat. My balance is well enough to not hurt myself. I can walk up and down stairs without being terrified I am going to fall, and have a little more strength, was able to open a water bottle.

So what's with my speech????

[AnnieB3]

Tracy, Have you been talking a lot? Crying? Sometimes it's activity making a muscle group or groups worse but sometimes it's simply MG being unpredictable. Can you swallow? An inability to swallow is an emergency.

If I socialize, my tongue/jaw can cramp up for the next week.

Even though you're on Mestinon, you still have to be extremely careful. It is probably going to take MONTHS for you to get better due to how long you went without meds.

Of course it's the weekend and you probably don't have an urgent care center close by. I'm not talking about the ER but you may have to go there anyway. Sometimes it's something like a med or a thyroid condition or an electrolyte being off that needs to be checked.

Look at your face in the mirror. Can you smile? Is there one-sided weakness (yes, to check for signs of a stroke)?

And Mestinon is kind of funny. What if you have really weak trunk muscles, for example, and you dose Mestinon to make those muscles stronger? Well, your muscles that have been just fine on 30 mg. may feel overdosed on 60 mg. I am by no means saying you should change your medication!!!! I am simply trying to think of things that might be going on. How do those muscles feel in between doses of Mestinon? Are they worse or better?

Don't freak out. Think carefully about what you've done in the past couple of days that could have weakened those particular muscles more. They are referred to as the "bulbar" muscles.

You should give your neuro a call if things get worse. Obviously you are still on the verge of an MG crisis. You may be for quite some time. It's not fair but that's the way it is. You may need more IVIG, more often or need to add Prednisone on a short term basis, like IV SoluMedrol in the hospital for a couple days and then tablets. Although I'll bet you are one of those patients who may get "hooked" on Pred and that may make your infections worse.

You are in a bad situation right now. Can you tell me what antibiotic you are on at the moment? That may be playing a role.

You can try to put a cool washcloth on your neck and jaw. Sometimes it helps to sip on cool water. You can get a neck brace for your neck to rest those muscles or a u-shaped pillow. I got both of those at Triple A to use when I need them. Do you have a walker? Do you have any other "tools" in case you get worse?

I hope things get better. If not, you know what I would say to do.

Annie

[Tracy9]

Well, I'm just laying in bed with oxygen on. My brother who has COPD gave me all his oxygen because he never uses it and it really helps me, so I lay with it on for a while each aft/evening if I feel not so good.

When the Mestinon wears off, my legs turn to Jello, I feel weak all over and tired. But mainly I can't walk well anymore and my arms start to ache. Any level of functioning is far more difficult. I go from being able to walk for a bit unassisted to back in bed because it's too hard. Now even with the Mestinon I'm not up for long, but how great it is to be able to get up for an hour or so!

No crying, maybe talking to hubby a little more than usual. I do notice if I eat or drink anything cold my tongue is out of commission for at least a half hour.

Recent bloodwork showed I went from very hypothyroid to VERY hyperthyoid and I have no idea why. I just got it in the mail yesterday from my PCP. He had a note asking if I am taking my meds right which I am.

Choking more on fluids, but that's been the case for a while. I get IV Solumedrol every two weeks for two days before IVIG but that's the only steroids I can get. It's contraindicated with Lyme and I can get very very sick if I take steroids. I shouldnt' even be getting them pre med for IVIG but without them I get too many side effects.

I just started Rifampin four days ago. It is for Lyme and Bartonella. I was on it previously for five months.

I have a walker and wheelchair. I can bring the walker upstairs to use to go to the bathroom but otherwise, I'm always just in bed because I can't do anything. My hands don't work and my balance is so bad all I do is make a mess or hurt myself.

[MzTracey]

Does it sound like you are drunk and slurring your speech? When i was first diagnosed thats where mine began voice, smile was gone, eyes wouldnt completly close, swallowing pretty much gone (liquids coming out of my nose at times instead of going down my throat), choking on my food,and weak neck. Then the limbs were affected arms, legs, I fell a few times, balance was bad as well. I ended up in the hospital too pretty quick my breathing became the next thing and has been the main issue these last 17 years since my diagnosis. I and remember being so frusturated when I would say something and no one could understand me all I got in response was,"huh", or "say it again" and feeling so tired it just would take to much energy to try and repeat myself so I began to just write things down instead which was so much easier. It can be scary especially when you dont know what is going on with your body and going the emotional part of it all as well. I was there too.
You are just on mestinon? have they mentioned Prednisone yet? thats what got me through some major flare ups, it has some side affects that arent all that great and its hard to get off this med but its helped me as well as IVIG treatments. Hope i was able to help
-Tracey

[KathyV]

Originally Posted by AnnieB3

You should give your neuro a call if things get worse. Obviously you are still on the verge of an MG crisis. You may be for quite some time. It's not fair but that's the way it is. You may need more IVIG, more often or need to add Prednisone on a short term basis, like IV SoluMedrol in the hospital for a couple days and then tablets.

When I was experiencing similar symptoms (trouble talking, moving my tongue, holding my head up, breathing), my neuro put me in the hospital for IV SouMedrol which didn't help and then he ordered a series of plasma exchanges (the first and only time so far). While I was in the hospital they decided to also do my thymectomy which was scheduled to be done in a couple weeks.

Up to that time I had only experienced ocular symptoms. While I knew these were all possible, it was still a little scary.

[Tracy9]

I really can't take steroids because they are contraindicated with Lyme Disease. They make the infection go crazy.

[MzTracey]

Have they mentioned Plasmapherisis? (dunno if i spelled it right) When I had an MG crisis they did to me helped too..

[AnnieB3]

http://www.ncbi.nlm.nih.gov/pubmed/10342905

Tracy, Do you have an endocrinologist? What if while you are on the Rifampin it looks like your thyroid is normal or hyperthyroid but then when you go off of it you get hypothyroid?

It might be worth it to get a scan of your thyroid, just in case you may have an autoimmune thyroid problem making things worse.

Be careful with taking oxygen. If you can't breathe out well, you can get too much oxygen, believe it or not. It's time to get a very good pulmonologist so you can have a Bi-Pap and/or oxygen while you are sleeping and probably awake. Obviously you need that but doing it without direct doctor supervision is not a good idea.

This may be gross but what about a potty chair in your bedroom? Of course, that would mean assistance from "someone."

It's not a bad idea to have an assessment by home care to see what else you could be able to use to make things better. Do you ever sleep in a recliner?

I hope you get more care soon.

Annie

[Annie59]

Tracy, I had a hot shower that was much hotter than usual because I just was weak and leaning over in the shower to turn knobs was risky......I will never forget that day as that hot water was the biggest factor in being admitted that day for MG crisis. I went limp in the shower and my chest, breathing changed dramatically. That was July 3rd. around midnight at the hosp I was all hooked up to machines and they gave me my first dose of 60mg mestinon. I finally fell asleep cause I could breath!!

I was released because the intial tests came back negative tho tensilon wasnt done cause the hosp pharm was out of it. Another big darn piece of bad luck. If only that had been done and I'd reacted in front of all those neuros like I did with the neostigmine. On July 7 my breathing got worse so the neuro put me up to 75mg 3 times a day. That sure made me walk alot better but it cause my diaphgram to go into these twitiching marathons when ever I would cough or lay down. And after a few doses I couldnt talk. I was at Walgreens checking out and my words went into mush. It took me well into the second year on the mestinon to figure out all the ways it acts on my body in differnt situations.

I am still learning and without support groups I would know only based on trial and error as I have been told nothing by any neuro I have ever seen.

Annie59

[nevadabound]

Originally Posted by Tracy9

Well, I'm just laying in bed with oxygen on. My brother who has COPD gave me all his oxygen because he never uses it and it really helps me, so I lay with it on for a while each aft/evening if I feel not so good.

When the Mestinon wears off, my legs turn to Jello, I feel weak all over and tired. But mainly I can't walk well anymore and my arms start to ache. Any level of functioning is far more difficult. I go from being able to walk for a bit unassisted to back in bed because it's too hard. Now even with the Mestinon I'm not up for long, but how great it is to be able to get up for an hour or so!

No crying, maybe talking to hubby a little more than usual. I do notice if I eat or drink anything cold my tongue is out of commission for at least a half hour.

Recent bloodwork showed I went from very hypothyroid to VERY hyperthyoid and I have no idea why. I just got it in the mail yesterday from my PCP. He had a note asking if I am taking my meds right which I am.

Choking more on fluids, but that's been the case for a while. I get IV Solumedrol every two weeks for two days before IVIG but that's the only steroids I can get. It's contraindicated with Lyme and I can get very very sick if I take steroids. I shouldnt' even be getting them pre med for IVIG but without them I get too many side effects.

I just started Rifampin four days ago. It is for Lyme and Bartonella. I was on it previously for five months.

I have a walker and wheelchair. I can bring the walker upstairs to use to go to the bathroom but otherwise, I'm always just in bed because I can't do anything. My hands don't work and my balance is so bad all I do is make a mess or hurt myself.

Hi Tracy, when i had food posoning, i did not sleep all night had to get infront of a fan so it would blow oxygen to my face so i could breath easier, so the next day i was really bad becasue of no sleep and was soo fatigue went to the hosiptal they ammited me they put me on oxygen dont know why my nuero wasnt called hmm ? anyway my point is here i got an oxygen tank they gave me to bring home ( i talked them into giving me one) i myself self dianosed my problem ( not) and used the tank for about a week had a nuero appt told him and he SAID NOWAY for me to use oxygen it not mg related if i need breathing help then im in a crises hmm , my thoughts are should not use some ones else oxygen for what we think might help, we feel its helping but can cause damage in brain beacue its not the real problem thinking we need oxygen beleive me i know as well and felt good breathing it but can cause brain damage so i gave back the tank gee doc was no fun