[Nicknerd]

Hey guys,

I'm begining to get pretty worried about the state of my MG...Every morning, I wake up and am unable to move my tongue to the right or left to touch my back teeth. My speech is very slurred and getting harder and harder to understand. I take my prednisone (60 mgs) and my 180 mgs of mestinon SR as soon as I wake up...There's a touch of improvement within an hour...Then I take 60 mgs of Mestinon two hours after the first meds...Sometimes there's improvement right away (within an hour), and other times, there's not...I know that when it's hot, things are much, much worse...Today, it was cool and I had a full day of being able to speak quite clearly, which is odd compared to the last couple of weeks...I also have a very odd chest infection where I have no fever but have a lot of congestion in my lungs...When I cough, it sounds like the worse cold ever...I get really exhausted after coughing for a bit and sorta feel like I'm drowing, there's so much phlegm (sorry to be so graphic)...I'm taking amoxicillin for it, even though the doc. says that it's a virus, but to be safe, he prescribed the antibiotic. I'm also having a lot of ear fullness/crackling/whooshing sensations...When I talk, or attempt to, it feels like the ears are full and this affects my speech too...

Anyway, when my tongue is very weak, I can see these longitudinal lines going down the tongue. The tongue is pale looking and can't be bent unto itself.

Does anyone else's MG affect the tongue this badly? I'm worried that my tongue may have some atrophy due to the MG or maybe even something else...I don't know why the prednisone isn't working, almost seems like it's increasing my weakness...My arms are a lot weaker now...It's hard for me to brush my hair and basically hold my arms up at a 90 degree angle...I also experience cold hands when holding my arms up and pins-and-needles...

I know that these symptoms are common for MG (not the sensory ones), but I'm just wondering why after more than 3-weeks of taking prednisone, there's no improvement....It makes me worried that maybe I was misdiagnosed and/or I've got some other disease going on...The tongue paralysis in the morning is the strangest symptom of all...I can't seem to find anything like that under MG on the net or in other people's experiences...

Thanks for your time, guys!
Nicky

[AnnieB3]

Nicky, My first thought is for you to call your neuro.

Pred can make you weaker at first but after 3 weeks it should've settled down. However, everyone's response to a drug is different. And then there's the thought that Pred IS making you better but that now you need to back off Mestinon. DON'T do that without speaking to your neuro first! I am just throwing things out there and have no idea what is going on!

Did the doctor actually look in your ears? Maybe you have an ear infection too.

Because you are on Pred, an infection can be worse. You are immunosuppressed and can get infections more easily. Did they do a chest x-ray to rule out pneumonia or aspiration pneumonia? You don't have to have a fever when you have pneumonia. And often when you are on Pred, you won't! Do you have any signs of sleep apnea? Some people clench their jaw and mouth at night and that could be why your tongue muscle is weaker after sleeping. Any muscle that has sustained use like that will get weak. Maybe a sleep study is in order.

I can sit here all day and "guess" at stuff but what you really need is a very good internist AND your neuro. They need to check your breathing stats and oxygen saturation. That pins and needles could be from not enough oxygen. And because of the pale tongue, they should check your hemoglobin (basic complete blood count) and ferritin. Pred can cause a bleed - it did with my Dad. Don't panic!!! Just get some help at urgent care (because it's the weekend).

MG is going to fluctuate like that and often have no rhyme or reason. When I do something, like errands, I'm weak at the end of that day, then I'll get weaker the next and the 2nd day is often the worst. You need to kind of see how your MG is after doing things. You may need to cut back on activities when you are like this or you may get worse.

My neuro would not give me the Mestinon Timespan (aka Mestinon SR in Canada). It does not have reliable dosing, according to a lot of neuros. You can all of a sudden get too much of it, especially if you are taking regular Mestinon with it!!! My neuro, and I'm paraphrasing here, made it sound like it was playing Russian Roulette with a drug.

Most of all, rest as much as you can. Take it easy - I hope you are feeling better soon.

Annie

[Nicknerd]

Thanks so much, Annie! You always reply to my posts right away it seems and your advice is always awesome and spot-on...I really do appreciate it....I do clench my jaw at night...I was even fitted with a mouth guard by my dentist for it a while ago...I've been suffering from a very stiff jaw for more than a year, and often having to stretch it throughout the day...It does seem that this stretching helps out with moving the tongue around a bit in the morning...

I went to the hospital at the begining of this week about the chest infection because I was worried that it could be pneumonia, or that I'd inhaled something since my swallowing has gotten a bit bad...The doctor didn't order a chest x-ray for some reason, even though I asked for one...He just didn't want to deal with me because he doesn't know enough about MG...He asked me to go to the downtown hospital, but I felt too ill and would have had to take the bus...

I agree that I am suspicious that the prednisone might prevent me from having a fever even if I do have an infection...

I also agree with you about the timespan mestinon...I was very reluctant to take it since (1) it's usually taken at night and (2) I feared that I'd get overdose symptoms if I'm taking it with the 60mgs every 4-hours...which I do at times! I was also curious about really still needing the mestinon if I'm taking prednisone now too! This seems like such a mess!

You're right about the hemoglobin...It is low...Last time I checked, it was at 90 (supposed to be 125), which isn't too bad, but still abnormal!

I'm seeing my neuro. on Monday...She's at the hospital downtown, so I'm going to ask for a chest x-ray, blood work and everything...I might even ask to go back into the hospital...It's worrisome...It's too hard to get better with all of these variables involved...I just hate staying in the hospital (as I'm sure everyone does)...But I want to be better, and waiting around to clear up an infection without an immune system doesn't seem to be too promising...

Thanks for the advice, Annie!

P.S. Does the MG affect your tongue too?

Nicky

[Scots Kat]

Hi Nicky,
I'm sorry you are feeling so rubbish during the summer. It doesn't seem fair! I wanted to agree with Annie (as usual). When I started my pred it took about 5 weeks to help me and for the first 4 I felt worse than before! My neuro was so worried about how long it was taking to be effective that he sent me in for a round of Ivig. At the time I didn't think the IVIG helped because I still felt terrible for about a week but after that I was nearly "normal".

If you do have viral or other infections they could be making things worse too - I always feel completely wiped when ill.

In terms of your tongue - mine has never been affected to the degree you describe. Since it seems to be something at night that is causing the weakness could you maybe try a BreatheRight strip (it'll open up your nasal passages and maybe reduce stress on your mouth) and a bite tray (to add some space in your mouth so you aren't pushing your tongue too hard against the sides). I don't know - these are just some ideas.

Take care!
Kathy

[Joanmarie63]

Good morning, I hate to hear you are suffering so much with this. I have not had this happen {I do get tongue swelling but not stiffness} Listen to Annie {she is always right} I hope things get answered soon. As for it maybe being another disease, sadly we with MG seem to always have "something else" which makes it harder for us as we never know if it is MG or the "something else" Good luck at the Drs tomorrow and I am sure I speak for us all when I say we will be waiting to hear what happens and you are in our thoughts.

[maryec]

Nicky,
I don't have your infection, but your muscular symptoms you mention, with your tongue, & jaw is what I have also, along with the rest of my body. I am set up with the MG specialist, for eval & treatment, I already know I have denervation atrophy from my muscle biopsy in my leg, Emg & ncv showed it also. But am waiting to talk with the new doctor about this progression.
Sorry to hear you are suffering with this to.
Mary

[erinhermes]

Hey sweetie! I DO know what you mean about the tongue, speech thing. It sounded like I was drunk all the time and my face was "frozen" for a few months - of course, I was dx'ed with TMJ but couldn't tell me why I was unable to speak. It got to the point to where I couldn't leave the house b/c no one understood me.....

You really need a :boost" of some form, b/c after my 1st stay on the hosp, I was FREE of my speech impediment. Granted, I was @ 80 mgs by the time I got home, but it was welllllllll worth it to be able to be UNDERSTOOD again. I would also have to push my lower jaw up in order to "chew" - do you have that problem?

It is truly scary to think of how sick we get and don't even realize it b/c it creeps up on us so slowly, so if you CAN, please keep a list of your syptoms and ANY changes you may have......anything new should be reported right away!

The other weird thing is that my "new" temp is anywhere between 95-96 now. All of the immunosuppressants I take have hit me hard, so you mat want to ask your dr about that!

It DOES get better! It really does! It may take a little longer than you'd like, but you WILL get there!

Love,
Erin

[Nicknerd]

I feel a bit more encouraged...I tend to feel particularly discouraged when my tongue just wont move the way I want it to! I worry that what if it never moves again?! It's so funny, the things we take for granted...A chunk of muscle the size of a pork chop is really important! It's the difference between communicating and not, eating and not and sometimes even breathing! Sorry about the funny analogy with the pork chop...We're having those tonight, and since my tongue decided to start working today...finally...I can enjoy those too...lol

The MG is so isolating...It impacts everything...Socializing, eating, energy, outlook...When the muscles get to working again, though, I get my hope back...The thing about mine, though, is that I feel even isolated from my fellow-MGers just because my symptoms are so odd...

I'm thinking of giving the IViG a shot again...I only had two treatments last time, and even though it didn't bring about major improvement, it did seem to stabilize things for a while and I didn't have the degree of weakness that I'm having now...The headache I got was scary, but I will make sure I'm well-hydrated if I have it again...

Thanks for relating, it helps a lot...I feel more encouraged, Kathy, that it also took a while for the prednisone to kick in for you too...It's kinda pooey, though, because I'm definately getting all of the side-effects...insomnia, voracious appetite, swelling feet, face, neck, infections...I think I see the seedlings of the buffalo hump people describe too...Also haven't gotten my period at all this month...weird...At this point, though...I don't care! I just want to be able to eat and speak freely for a while...

Thanks, Mary and Erin for relating about the tongue...I feel like I'm the only one who's got this type of weakness...This will sound really odd, but I actually feel sorry for it! lol...it looks so weak and feeble...I feel so sorry for what our bodies are going through, as odd as that sounds...lol

Thanks, Joanmarie...I'm definately hoping that I don't have some other neurological disorder on top of this one...It's mainly the unknown that bothers me...If I find out I do have something else, at least I can prepare for the future in the context of what that thing is...It's just the not knowing that throws me for a loop...

Nicky

[AnnieB3]

Hey, guys. While I appreciate the notion that I'm always "right," that just isn't true. And medicine isn't about being right. It's about what is right for YOU and that is between you and your doctors!!!

I have had to navigate the medical world due to some pretty bad doctoring and that has only given me "some" information. I think the key to figuring any of this out is to think it through. And to trust your instincts. I'm grateful that I went into the "arts" because being a creative problem solver has probably saved my life a time or two.

Nicky, Just talk to your doctors and get some answers. Especially about the anemia, since that can stress out your heart. You really shouldn't do anything strenuous before you get that hemoglobin back up again.

Annie

[Nicknerd]

Hey Annie,

Do you mean to say that I shouldn't have stopped taking my prednisone?! Just kidding! Don't worry, I appreciate your creative thinking and I know that you're right about all the things you mentioned, but I'd never freak out and stop taking my meds. or something without speaking with my doc. first...Don't worry, girl! I know how you feel! With my other health issues, I'm part of other health-related online communities and often give out some advice re. possible culprits and maybe adding supplements...then I worry that someone might take a certain vitamin or something and then get a horrid reaction...I often have to go back and be like, "i'm just a layperson throwing out some ideas, don't do anything too rash!"

Anyway, I appreciate your advice because it always seems to be in good chronological order, this one could cause that which could cause this...I just take your clarity and try to relay it back to my Neuro.

Thanks!
Nicky