What does MG crisis feel like?
 

Hello everyone.. I am currently in diagnositic limbo.. They have ordered the Musk test (I guess athena labs is the only place that does this test and they have to mail the kit, then it takes a week or so after that.. ugh).
Anyhow, this past week my symptoms seem to have dramatically worsened.. I have no idea why (unless hormones could play a role?)... My generalzied weakness has dramatically worsened, I have now had double vision for about 4 days almost all day (used to be only when I was wiped out). I can barely function, it's as if my arms are too heavy for my shoulders, and head too heavy for my neck too (I basically can't swing my arms when walking right now).. I can't get up from a chair or ground without serious effort (and i'm 31!)
Anyhow, the most worrisome symptom is that the last few days my chest kind of has a dull ache when taking a big breathe, as if the breathe is stopped - including when I sneeze.. I feel short of breath, and my speech is more slurred..
If this is MG, when should I seek help? When i'm awake I can tell breathing is not easy, but I am a little worried about sleeping tonight..
I called my univerisity neuromuscular clinic and they are getting me in the morning.. but I was just curious if this does sound like MG??

Also, with the double vision, I can tell my vision seems odd , but it's hard to tell if its actually double.. i think it is.. A few months back I called my eye doc saying I Had double vision and he said my eyes looked good, and I thought huh, strange.. But i realize when I have to look at something I have to kind of go back and forth with each eye to see it right..
Thanks for any insight!

I also meant to ask- when yall try to "push" your muscles beyond what they want to do, do they tremble afterwards or shake with weakness? every muscle in my body trembles and shakes when I try to use it, after a few times it simply burns out and wont work for a bit.... OK thanks again!

Get yourself to the ER right now. DO NOT drive. Dial 911. If you have MG, it can go downhill VERY quickly. In the ER, they can do a neuro exam, arterial blood gas, pulmonary function tests, etc. "Yes" to your questions, which hardly matters right now. When you have generalized weakness that is getting much worse (like not being able to get out of a chair), not breathing well or not swallowing well or d. All of the above, you HAVE TO go to the ER.

No, it's not fun but you'll have to trust me on this. I know, trust a complete stranger. I've had an MG crisis and it is nothing to mess with. With MG, the worse you get, the longer it takes to recover. So just go in.

They can do a lot for you in the ER. They can't do anything for you at home! And it does NOT matter that you don't have a diagnosis. You might by the time you leave. Please, go in. I hope you'll be ok.

Annie

In the future - if you do have MG - "pushing" your muscles is not a good idea. That's how we end up in an MG crisis.

DITTO to what Annie says...and by the way, you are not the first person here that Annie has sent to the ER.......and she has ALWAYS been right!!

They all sound like MG. Im 20 and was just diagnosed with it. My symptoms got extremely worse right as i was going through having the flu and right after. So bad that i couldn't even lift my legs to get out of the shower, so i had to stay in there until i could get enough strength to lift my legs up with my arms to get over the tub. And with your arm problems-- i had the exact same problems, i couldn't even comb my hair without my arms giving out on me or driving i had to prop my arms on the wheel and took effort to turn the wheel. I went to get blood tests done for MG and they came back positive. I also had "double" vision but i don't know either if it was considered double vision or just trouble focusing my eyes on items. Anyways, i would agree with the other posts and seek medical attention! good luck!

-- Cait

Thank yall.. So yall think this sounds like MG?
I know yall are right.. but gosh, I sooo dont 'want to have to go to an ER.. The thing that started this all was an IUD that they perforated when they put it in.. I walked around for a week (i called my dr in the business hours) saying I think something is wrong and landed in the ER with extremely low blood counts internal bleeding and getting hospitalized for four days with blood transfusions.. So i know I wait too long..
I just keep telling myself I'll be ok, I can make it a little longer.. till the next appointment.. I have one the first thing in the morning.. and the university ER is not a place I care to be all night.. but of course I don't care to be intubated or in a state of emergency at home either.. ugh.. I just can't believe it has come to this after months of asking neuros for help.. .... and they just run one test and wait.. and then another test and wait..I have told my husband I felt like I'll be dragging a limb or not around by the time they try treatment on me. ugh.. thank yall so much! I'll update yall

Hi, I just wanted to say, if you're still here: yes, this is an emergency. You are describing a crisis, and like the others say, things can go downhill very fast and without warning. Please don't delay. ER or ambulance, immediately.

For what it's worth, yes, it sure does sound like MG to me.

Abby

You'll have to trust these guys. It doesn't matter if you have an appt. in the morning. If you don't listen to this advice and, instead, go to the appt., be prepared with a "bag" to take with you to the hospital because if your doctors don't admit you, they aren't worth their degrees. And a neurologist does not have the capacity to do breathing tests and assess that. You need a pulmonologist. Those two specialties work together in a hospital on an MGer's case. If you don't have a pulmonologist, get one. A good one.

We can't say if it's MG or not but if it is, MG can be life threatening. You can literally stop breathing. They need to do MIP and MEP, not just a measly bedside spirometry. FULL pulmonary function tests (PFT's).

These guys know that I hate the ER, for a lot of reasons; however, it is the best place for someone in your condition.

What does an MG crisis feel like? It's different for everyone. During mine, I could still speak, because I hadn't been using those muscles. I couldn't breathe well, I couldn't open my eyes or lift my limbs by the time I got to the hospital. My MIP was -teens and my O2 saturation was in the 70's.

You have 640 skeletal muscles, any one of which can get weak. It "feels" like you can't use a muscle. Like you can't take a breath in or out, like you can't swallow or talk or open your eyelids or lift your head or get up from a chair or . . . . you get the idea. IT'S NOT NORMAL how you are feeling, whatever the cause. Good grief, do you want to plan your week or have your family plan a funeral? Sure, that's being dramatic but it's utter nonsense to sit at home and wait for this to somehow magically get better. I'm saying that with a lot of caring and experience.

Annie

Sue, I'm certainly not always right, even though I appreciate you saying that. ;) I would rather MGer's err on the side of caution, that's all.

Hello y'all!! Thank y'all do much for your advice!!!! I can't tell you how much I appreciate it! Anyhow quick update. Admitted into hospital and starting ivig here in a minute! I'm thrilled to hopefully feel better soon but terrified that it wont help. They don't have a diagnosis pinned down yet. So well see. I hope they find an answer and the ivig helps! Thanks again! (my Phone is out of battery and no laptop here yet!) will let y'all know how it goes!

I'm very glad you are getting some help. If you can, visualize a beach or any place where you feel calm and secure. Stay in that place mentally. You don't need stress making things worse. It really helps to keep a calm center. You'll be able to ask the right questions and get the best help that way too. Try not to worry. Since they started IVIG and admitted you, you should be fairly reassured that they'll try to make you better! There are other things they could do and they should actually do, like an arterial blood gas and breathing tests.

No one thinks to do this in the medical field but if you have a phone that takes pics, you can take a pic of your face (straight on and in good light). Can someone bring your phone charger? Or ask a nurse to do it so it isn't blurry. ;) You'd be amazed how helpful it is to have before, during and after photos when you're in the middle of a diagnostic mess. Some people don't even realize they have ptosis until they do that.

I hope you continue to get better. BTW, what's your "name?" Sorry, I haven't been around for awhile.

Annie

I'll post this on GrannyJo's thread about MTHFR. Your doctors need to know you have this, if they don't already. Doing IVIG in someone with "thick blood" can create problems such as blood clots. I'm not saying this to make you worry but there are more tests they should be doing. You may want to consult with a hematologist as well. And a cardiologist.

Thank u so much Annie! Great idea about the pic!!y phone is Dying but I snapped a pic and my eyelid is quite droopy (it's more my upper eyelid/below my eyebrow that suddenly says over the eyelashes is that a normal mg droop? ) oh thank u. Yea they know about my mthfr and don't think it to be a huge concern. I asked for my aspirin to take beforehand to be safe I'll make sure my

Thank yall so very much for all of yalls messages, i REALLYappreciate it!! Sorry, my phone died when I was replying and I just now got my laptop and phone charger!
Sooo.. I recieved IVIG last night, loading dose.. felt kind of bad this morning, but I think it was the benadryl hangover, I just felt SOO doopy! Do yall do benadryl with your IVIG? If it is MG, does benadryl exacerbate your symptoms?

It was strange, the nurse also noticed my "saggy" face and especially right eye.. I took a picture and it is better today, though I have been taking it easier today than i have in a long time!

For those of you that have had IVIG,... how long does it take for it to work if it is MG? They ran a TON of bloodwork on me, including Musk.. but it will take a while to get it back.. My breathing seems better today, but I do notice difficulty when I exert myself but nothing like yesterday where it was hard to talk without taking breaks

If this is MG, does IVIG do the tick usually, or do people usually need steroids, mestion etc .. I will be here in the hospital for a few more days getting more IVIG, another Lumbar puncture, etc.. If it works, will I just go home and it all go back to feeling awful if I dont go home with meds? I have been impressed with everything here, they seem to be on top of it and ordering a lot of tests since i'm not a straighforward case by anymeans..

Two more questions, (sorry, i have soo many)!!

1. For the eyelid droop- my actual eyelid does seem droopy, but the top part of the eyelid below the eybrow is what is really noticable.. I have never had "hooded" eyes, but it droops down to my eyelashes-usually i have a fairly big gap there- is that typical of MG?

2. When my muscles fatigue, I feel like they are almost vibrating afterwards. just really shakey- especially my face.. it almost feels numb, its hard to explain. My face and shoulders (from my arms being "too heavy" ) seem to be the worst with that.. anyone else??

Thanks again so much.. I am not a fan of this diagnostic limbo, just praying that this IVIG does the trick!

In my case it usually takes 2 series (5 TREATMENTS) of IVIG for me to see improvement. I think I'm at about 14 months of being dx'ed. I get IVIG about every 2 months. I am currently on Cellcept, Mestinon and Steroids. I had a year treatment with Imuran but it just made me real sick. Mestinon is good for 3-4 hours but it does help my droopy eye. Keep in mind that what works for one person may not work for another. My sister has the "saggy face" but so far is stubborn and won't seek treatment. Oh my IVIG comes without meds and only had a couple of minor headaches. A treatment takes about 2 hours and 15 minutes, so they give me a pretty fast rate.

Hang in there with your Neuro I'm sure he figure out what works for you. Hope you feel better soon.
Mike

Thanks Mike!!! I appreciate it!
They started my second treatment last night and increased the rate quite a bit..then a few hours later BAM woke up with a HORRID headache! Still have it pretty bad, but have been getting toradol and some other meds for it... but I am excited I think I might see improvement!!
My eyelid is back to normal- no more "saggy" face! Even the nurses have noticed this.. I have more strength and my fingertips seem less floppy...If it wasn't for the headache I think I'd feel pretty good! They are going to give me the third round tonight at a much slower rate.. Have to have another Lumbar puncture, brain MRI tomorrow, so We'll see! I just hope that I really am getting better!! I have felt bad for so many months it seems surreal to think I may actually feel better someday!

Drink plenty of water and I mean PLENTY!!!! That may help. Hang in there!!
Mike

Thanks... Now that the headache is a bit improved I can finally sit up and drink water again - i was having a hard time sitting up or moving before it was so bad.. Now I do have quite bad body aches and chills along with the headache and just spine pain.. About to start round 3 here in an hour... did yall notice instant improvement or did you notice some delayed improvement as well, days later did you seem to continue improving at all??

After 10 infusions I noticed improvement a couple days later. On the day of the infusion I feel pretty tired and sometimes a slight headache. But again plenty of WATER not coffee or soft drinks will help. I have noticed different people get different reactions. I talked to one fellow in NC that had complete remission after 5 infusions. To be so lucky.
Mike

Whoa, hold the needle! They are going to upset the fluid balance in your body for a few days and then do a lumbar puncture right afterwards?! Is this an "urgent" procedure to have done? If not, you might want to consider waiting. Please have a conversation with a doctor about this. With your clot risk, the risk for infection while being in a hospital, meningitis, etc., you really need to talk it through. Unless you are confident all will be okay.

They don't "have to" do the IVIG infusion "faster" as it sounds like they did the 2nd time. You can ask to have it done more slowly. That may reduce the side effects, like the headache. Good grief, faster is not always better.

What you describe, as the area just underneath your eyebrow (if I'm getting that right) coming down onto your eyelashes area is exactly an MG droop. There are different variations, of course, including one or both sides, the muscle below the eye, an eyebrow drooping and your entire face. I simply love when my nose droops. :eek:

That vibrating/shaky thing may be due to muscle weakness. Has anyone checked your blood sugar when you are like that? Are you on any other drugs that have that as a side effect. You can't always assume everything is caused by one disease. When muscles get weak, circulation can decrease. That can make your muscles feel weak when it is probably the nerves. I have to wonder if you have a B12 deficiency. Please have that rechecked. And sublingual B12 is far better. It bypasses the GI tract and goes to work in the bloodstream right away, not unlike nitroglycerin. I like the Jarrow Formulas brand, though the Source Naturals brand is good too. I get mine at www.iherb.com due to their service and savings.

I should say that I've not had IVIG, can't have it. But from what I know from others here and friends who have had it, the onset time can vary as can how long it lasts. I hate to douse your enthusiasm but you have MG (probably). If you do, unless you go into remission at some point, you will always have the effects of it. You'll never be "normal" again. So don't think because you had IVIG that you are now superwoman! ;) You do not want to get to this crisis point again.

I hope things continue to go well.

Annie

Thanks Mike- I am downing more and more water right now.. they just started IVIG #3 and said they won't run it over 50

I told them last night, and agian tonight, If I'm goign to be here in the hospital either way, I could care less if it takes a while or not! I'm here regardless... but if it's going to "fix" me faster I can deal (which I don't think faster rate = fixed faster from what i've read)

Annie- thank you so much! I will deifntely talk about the LP again tomorrow with them. I had my first one only 3 or 4 weeks ago.. but they wanted it repeated since my symptoms worsened so fast this past week.. They are confused by the sensory issues associated with this all. but I also told them, maybe I have small fiber neuropathy secondary to just being pregnant a lot and nursing for a while along with the GI issue, and the weakness is separate, so they are leaving a lot of possibilies on the table I guess.
I have wondered as well about the b12- it makes sense with me being post partum and having a malabsorption issuse (possibly celiac) right before onset of all of this- but my b12 levels have been good, so they added a methylmelonic (sp?) acid level, which they say will give a more accurate reading of the b12 levels. but I may just go ahead and get one of those sublinguals, since from what I am aware of it can't hurt! thanks for the link!
I wondered if the vibration/shakey feeling is just muscle weakness/muscles pushed past their point.. Interesting about the eyebrow too! I wasn't sure if that was what an eyelid with MG does or not-- the nursing staff here all noticed my right eyelid when I got here initially and then at the end of the day yesterday dropping.. I did take a pic, and I can notice a difference- my whole face does seem to droop! I thought a few months ago to myself, man being pregnant really made me age- though kind of took away/botoxed effect my forehead some.. strange!
It is amazing how much better I do feel so far though- I feel like my strength tests were much better this morning (though I coudln't see straight with the IVIG headache)

One odd thing (a good thing I think) is when I woke up with the headache this morning I went to swallow the tylenol they gave me and i tilted my head back and swallowed big gulps of water.. I realized suddenly that huh, swallowing seems "normal" all of the sudden! I hadn't really realized how abnormal swallowing had gotten.. is that also typical of MG? I had to go get an MRI of my neck yesterday (found it odd to swallow in that position) and today one of my head (they thought they found something on the neck, but didn't ), and swallowing was now no problem in that position!!! I am getting SOOO excited that I might respond!
As much as it will be a lifestyle change having MG, or anything else that responds to IVIG.. I can deal with that and will be thankful every single minute of everyday for it.. After being told ALS was a possibility in the beginning of this all ..MG is manageable, even if it is a hard road, i"M just thankful It's a road that i'lll be able to be on for years to come, and see my kids grow!
Thank yall again so much for yalls time!!! I really appreciate it, and i'm sure i'll have many more questions!! sorry!!! This is all new territory!

MG can affect any of your 640 skeletal muscles, including the ones you need to swallow! So, yeah, it affects everything you do.

The sensory issue might be something else or it could be MG. The neuro who diagnosed me said he hears that a lot from MGers who aren't diagnosed yet and even some who are. When muscles get heavy and weak, they can feel like how they do if you get the circulation cut off in your arm. Not that extreme but similar.

Have you been tested for a Vitamin D deficiency? That can affect the muscles too. Did anyone do the celiac antibody tests?!!! If you have CD and keep eating gluten, you are damaging the villi in your small intestine (and possibly damaging your brain as recent studies suggest), so get tested! I have CD and it is entirely doable to live without gluten.

People with autoimmune problems can often have more than one disease. Some people I know have those odd mutations, clotting disorders like antiphospholipid antibody syndrome, etc. too. So your doctors should not dismiss MG simply because you have other symptoms. I hate when they do that. They like things to fit neatly into the "standard" diagnostic guidelines.

Keep getting better. Get enough sleep too.

Annie

THanks so much Annie!!
That is really interesting that your dr said a lot of MGers have that sensation- that describes mine pretty well- my face almost feels numb after I smile or laugh for a bit, and it won't reallly be able to move.. It feels like vibration or asleep sensation.. My shoulders especially get this when I walk around swinging my arms (which I think we should be able to do, but this past week proved to be too much for my body, so I had to walk funny with both arms still to my sides and a straight face)!

My vitamin D levels were 21, so i have been taking supplements for a few weeks now, along with attempting to get more sun too! As far as celiac.. They tested my antibodies (when this all began, and I was having GI issues and feeling weak), but I had already been gluten free for a week or so, they were negative, then about 10 days after being gluten free had endoscopy/coloscopy (its really been a fun year), that besides gastritis and esphagitis was normal.. though I think only one biopsy of small intestines was taken... reading that neuro symptoms can also be a part of celiac, i cut all gluten out of my diet- no processed foods at all, not even gluten free ones, no caisen and no soy... It seemed to calm down the GI system a little bit.. I've been gluten free- very strict about it for almost 5 months or so now, just in case my neuro symptoms were from that! It's really not hard to do, except in the hospital setting!! I"m starving!!! they don't have a lot of options for gluten free.. haha, I had my hubby sneak me in some better food! :)
Thanks again so much for your help! I hope tomorrow brings even more improvement! I am getting very excited to think whatever I have is manageable!!! I can't imagine not worsening day after day after day!!!!:)

One note about the GF/Celiac stuff - the tests for Celiac will only pick up Stage III or higher damage, so you could very well have Celiac and it won't "show up". There is currently no test for Gluten Sensitivity, but the symptoms (and effects of continuing to eat gluten) are the same.

The fact that your Vitamin D levels are so low certainly would seem to indicate something going on there. If you go COMPLETELY GF, you should see an improvement within a few months. And you have to stay GF for life.

You will want to give serious consideration to implementing a GF diet for your entire household; while many problems caused by undiagnosed CD can be reversed once a GF diet is started, many others ARE NOT REVERSIBLE (MG, for example).

That's not to say that MG is CAUSED by untreated CD, because the two are entirely separate conditions, and many people with MG do not have CD.

However, if a person is gluten sensitive and doesn't know it, their immune system will go for many years without working at peak capacity.

I'm so glad that you finally have an answer for what's been "ailing" you for so long; it's going to be challenging with young children around the house, but it is manageable. Don't be afraid to ask for help, and don't overexert yourself - you could find yourself in the hospital again (or worse).

There are many medications that are absolutely contraindicated with MG - be sure that your doctors are aware of these (your dentist, too). You may want to get a MedicAlert bracelet as well, just in case.

The folks on this forum are the absolute best - they're always here to answer any questions you may have, or to put an arm around your shoulder on the days when you need to have a "pity party" ('cuz really, people who don't have this disease don't understand how we FEEL most of the time).

Thanks Teresa!!! I appreciate it!
Yea, i have been gluten free now for about 5 months I think... The bowel issues (what I think preceeded the rest of this mess) have improved some, but not back to "normal" for me.. I have dedicated pans etc that I use in the kitchen to avoid any cross contamination, and my kids and hubby eat mostly gluten free now too! I have two familiy members (aunt and cousin) that are possibly celiac too.. so I will just stay on this diet (though around Christmas I'd really like to indulge in my traditional cookies) until I start improving GI and Neuro wise, and then may test the waters someday, but for now not worth the risk!

As far as the IVIG goes, I felt like I was feeling a little better yesterday, but then the side effects of the IVIG seemed to kind of take over- flu like symptoms, pretty bad headache etc, been taking tylenol and motrin but temp is still getting up to 100, so i just kind of feel all over weak again.. though I think improved, but my right eyelid is droopy again, though not as bad.. humm... Wish I had a few more answers! I will be here in the hospital at least another night- LP done today, EEG/evoked potentials tomorrow.. Hopefully the body aches and IVIG side effects will wear off and hopefully the benefits will start really showing up!

"Glutino" perfect pie crust mix or "Beyond The Grain" sugar cookie mix are great for cookies, pie crusts, lefse (yeah, I'm Norwegian) and all sorts of recipes.

Has anyone ever checked your immunoglobulins? You know, IgA, IgG, etc.

If you have a low IgA, a celiac antibody test can look normal when it's not (false negative).

If you have a low IgG, it's the same with the MG AChR antibody tests. I believe MuSK is IgG too.

Some people with certain low Ig's have problems with infection. Maybe yours are fine but it's worth checking.

Thanks Annie for the gluten recommendations!!!! I stopped ALL processed foods even the gluten free ones for months, but now I induldge in them, as I just was always too hungry eating nothing but unprocessed foods :) Have you tried the Pamelas chocolate chunk cookie mix (in the purple bag) YUMM!!

Funny you mention the antibody issue.. I have never mounted antibodies- When I was in school I had to get titers to a lot of illnesses and vaccines checked, and they were all negative, despite having the illness (like chicken pox) or vaccine.. I actually got the MMR and varicella vaccine multiple times and the titers continued to be negative.. I mentioned that to the dr's here on the day I got admitted.. for fear that that might alter all these fancy antibody results, they are running an immune panel on me.. I have never been one to get sick easily though. In fact everyone around me can get sick and I usually will stay well (though I am a little OCD about the hand washing, so maybe that's the cause) .. SO that immune panel is pending along with everything else..
I felt like I was doing better, though still feeling icky from the whole IVIG meningitis issue, but tonight my fingers feel weaker (maybe its due to cranking the heat up since I have chills) ugh.. this whole diagnositic uncertainty isn't very fun.. It's so much easier to know how to handle and how to plan the future when you have an idea of what the diagnosis is... thanks agian so much for your help!

Best MG Neuro in Washington D.C.?
 

Anyone have an idea who the best MG neurologist in D.C. Metro area is? I'm on 2500 mg of Cellcept per day. I joined the MG life in 2005. I had my MG crisis in 2005.

Just wanted to let you know that I also have both small fiber neuropathy and MG. I was diagnosed with small fiber neuropathy less than a year before MG. And I JUST noticed my eyelids are starting to droop exactly the way you explained yours....so very glad to get that information. At first I thought I must be getting a really bad eyebrow wax job, then I couldn't figure out where the area went where the eye makeup goes, then I kept thinking my eyes looked funny; but because it wasn't what I'd seen pictures of I never thought MG.

My eyes are the last of the symptoms to show up, I have generalized. I didn't think this was going to happen, but it's almost like my eyebrows are touching my eyelashes now. It sucks!

I was in the hospital in July for 8 days in a crisis, though I was not vented. It sucked. I've never been so weak in my life. Looking back, the heat probably contributed plus I'd missed some IVIG. My MG is managed with IVIG and Mestinon. I get IVIG every other week for 2 days.

Careful with that IVIG rate; you are describing signs of aseptic meningitis. Hopefully it won't get worse; it is just treated with pain meds and fluids until it passes anyway. It is caused by them infusing it too fast usually.