New Here! Trying to Hold It Together

bluesky · 04-01-2009, 11:29 PM

Yeah, I know, Annie. I thought to myself, "this is going to come back and haunt you" after I pushed the send button. Still, it makes me mad that these docs are completely protected from their own mistakes. Oh well. Now I can't figure out how to take it out. And my eyes are blurring and the little letters are doubling. Shoot! How do I edit?

Okay, now you have me half packing to get to UNC!!!! I know it sounds crazy but just hearing one person on a forum be able to say, yeah he's a good guy, he'll listen to you is more advice than I've been able to get. Plus, I've read so many of his articles and his physician's manual on the MGF site that I know he knows what he's talking about. The question was, will he listen? So tell me, what is the name of the hotel you'd recommend?

If I could get help, even to be told no, you don't have this, by someone that I have confidence in, it would be worth the money. That I don't have. But you know what I mean.

My titer levels were .05 and .07 with a positive result being >.02.

bluesky · 04-01-2009, 11:38 PM

Thanks for the tips, they're good ones. It's funny you should mention not leaving anything out. You caught me! Because sometimes I really am tempted. If I say fatigue, I get told depression. If I say trembling I get told anxiety. If I tell a doctor that I'm a widow I get the "you are a pathetic wretch who clearly can't cope without a man" look. Good grief, I hate that look!

Scots Kat · 04-02-2009, 02:07 AM

Hi Bluesky,
I'm sorry to hear you are struggling with diagnosis. I was really lucky and was diagnosed as soon as I walked into the neuro's office (although I had waited along time thinking my symptoms were all in my head). I wanted to reply to you because of what you wrote about your kidney stone surgery. It sounds like you had an anaestheitic-induced crisis. I had one after I had my wisdom teeth out and it was not fun. I can't give you medical details (I'm a primary school teacher - not a neuro-scientist) BUT my understanding of it is some anaesthetics block the same neurotransmitters that MG blocks so even fewer messages are getting through to the muscles. After my reaction to the anaesthetic I had a simple blood test done to show that I am pseudocholinesterase deficient. Basically, it just means that I can't cope with certain anaesthetics and need more of the "reversal" drug to wake-up properly. I've since had two more surgeries under general anaesthetic and had no more problems. I hope that all made sense to you - maybe someone with a better understanding can clairfy points I've muddled up!

I agree that based on the symptoms you've shared it does sound like you have MG, but again, I'm no doctor. Have you contacted the Myasthenia Gravis Association? I'm not sure what they could do for you, but it might help to speak with someone face-to-face if possible. I'm going to a conference in Glasgow in May, but I suppose Scotland would be a bit of a trek for you!! My own MG started out fairly mild compared to some of the cases here, but flared up significantly 2 years ago. I really hope you get the answers you need.

Take care of yourself.
~Kathy

hcmiller92 · 04-02-2009, 06:52 PM

It's all real simple, Bluesky. Just take 60mg of Mestinon and if you see a difference within an hour, you have MG. If you don't you need to find a new doc and a new forum.

Don't know why they make it so complicated when it isn't.

Quote:

Originally Posted by bluesky

Hi Everyone,

I've been following and enjoying your posts for a while but have never posted myself. I suppose I was hoping to get a definite diagnosis myself first but it's not turning out to be easy to do that at all.

Please, I would like your advice. Your help! I'm trying to keep going but it's discouraging! To make a long story short I have been sick for almost eight years. I came across myasthenia gravis on the internet and it was finally a disease that I felt really fit my problems. I ended up getting tested at the Mayo. I tested positive for the Achr antibodies, but nothing much showed up in the EMG or nerve thingy (sorry! forget what it's really called). I asked several times for a SF EMG but it was the neuro's opinion that that wasn't the best test for mg (I know it is now). Anyway, because the AchR titers were low the neuro didn't think I had mg. Funny thing is, everything I've read since then leads me to believe that the titer level doesn't matter. I checked that with a MGF person because, really, I was beginning to think I was crazy.

Okay, here's the thing: I've been to two neurologists since then and neither of them seeemed to think I have mg. The neurologist I saw today wasn't at all impressed with my clinical exam. So I guess here's my question for all you wise people: I have a lot of the symptoms (I believe) like a drooping eye, sometimes my tongue gets very weak and I talk funny, I really, really struggle to breathe especially at night or when I'm worn out and I can't lie flat even to sleep, and my arms shake and tremble with very little exertion. But - all of this comes and goes. I've never walked into a neurologist's office having everything happen at once. I'll tremble and shake and I'm told it's anxiety or essential tremor. My eye will droop and I'll be told that it's not that bad (it seems really bad to me!) or that it's just because one eyebrow is lower than the other (which it is, but still, my eye is drooping). The breathing problems I've never had documented.

So I guess what I'm wondering is: do people with myasthenia gravis look terribly weak all the time? Is it the type of thing where you just walk into a neurologist's office and they know that you're sick? The neurologists always do the "don't let me push this limb down" test and I always pass with flying colors. It just takes time for the weakness to appear. And how badly I'll react changes from day to day and hour to hour.

I'm feeling a little hopeless about ever getting a diagnosis unless I can get a neurologist to stay with me 24/7 for a week. Or am I just clinging to the hope of a diagnosis and I'm not seeing this disease for what it is? I was trying to tell the neurologist today that I feel like I am suffocating a lot. I feel like my organs are too heavy for my lungs to push out. He really couldn't have cared less. Ugh. He finally sent me over to get a spirometry done but it was 9 in the morning and I had taken mestinon and I could feel that I could inflate my lungs at that point, so I'm sure the spirometry looked normal.

Okay, just one more question: probably my biggest problem is a horrible, deep, completely debilitating fatigue which has made it almost impossible to function much at all. Does anybody else have that?

Oops, this is turning out longer than I meant it to be. I guess I'm just trying to hold it together and feeling very discouraged. Does anybody have any thoughts or advice? Heeeelllpp!!

AnnieB3 · 04-02-2009, 06:59 PM

Your titers are above normal. That's not normal!

Those are the binding antibodies, BTW.

http://www.ichotelsgroup.com/h/d/hi/1/en/hotel/cphnc

That's the hotel. They have room service, fridges in some rooms, etc. They do have a pool, so that's nice. And they have that free shuttle service to the UNC buildings. Just tell them you are there for medical reasons and you'll get a discount, if you decide to go there.

I understand your point, HCMiller, but it actually IS important to get a solid diagnosis. Why? Because a person doesn't want to take immunosuppressants if they don't have MG. And those tests, however imperfect, are about the only way to confirm MG. MG is a clinical diagnosis backed up with tests. If someone does not get a SOLID diagnosis, then they can end up being tossed from neuro to neuro who refuse to treat their already diagnosed disease! And even a small dose of Mestinon can make "normal" people feel better so it isn't always a good way to "diagnose" MG.

It shouldn't be this hard for anyone to get an MG diagnosis. It is criminal.

BTW, that neuro you saw at Mayo isn't even a neuromuscular disease specialist, let alone an MG expert!!! You should ask for your money back! To edit, just press the edit box within your post (bottom right area) and then edit away.

Whatever you decide, good luck.

Annie

bluesky · 04-02-2009, 08:51 PM

Thanks, Annie! Thank you so much!

I agree that I do need a solid diagnosis. I need it for the emergency room, I need it for treatment, I need it so I don't have to keep going through the same nightmare again and again every time I see a new doctor.

The blood tests are supposed to be very specific and dependable. I read things like they "almost never give false positives" (from the MG Assoc) and false positives are very rare and have only some reported cases from other auto-immune patients, so I don't understand why I keep getting blown off.

Anyway, I went off of mestinon last night and today the whole right side of my face fell down. I took a lot of good pictures! Of course I'm finding it harder to breathe, but hey, breathing is for sissies right?

AnnieB3 · 04-02-2009, 10:47 PM

Now don't get too cavalier! If your breathing gets worse, you'll have to weight the benefit of looking bad for the doctor with the risk of having a crisis. You do NOT want a crisis!

I have discussed this antibody thing with Dr. H. It's very rare, like you said, for someone to have an AChR antibody if they don't have MG. And when you have the clinical presentation of MG, plus positive tests and a response to Mestinon, it's hard to argue with that.

bluesky · 04-03-2009, 01:17 PM

You made my day. You don't think I'm crazy!!!

I'm going to keep trying as long as it takes to get an answer. This forum has given me the confidence to go on.

I called Dr. Howard's office this morning and they said that they're scheduling new patients 8-12 months out. Yikes. That's not what I wanted to hear! Still, I'm going to go ahead with the referral (I'm going to have to ask the mayo doc for a referral, I don't see any other way). I'm also going to get a referral to a doctor on the west coast that Dr. Howard recommended as a specialist. I hope he's nice. I hope he listens.

Don't worry, I'll keep an eye on the breathing.

erinhermes · 04-05-2009, 02:09 PM

Hey there! If you have problems breathing call 911! IT is really, really serious! I was the same way until I was in the ICU for over a week - I am not trying to scare you, only to let you kow that it really is serious!

Have some sort of system set up where you can call someone and push a button to let them know you can;t speak - breathe - and then wait for the ambulance........

It is so wrong that you are having such a hard time being dx'ed...........

I know what you mean about being told it is on your head - I was told years ago (when I first started feeling weak) that I was depressed - and given a prescription for antidepressants - guess what? Didn't work - wasn't depressed - I was sick!

No one on this forum thinks you are crazy - we all know how hard it is to get someone to LISTEN to us!

Erin

Quote:

Originally Posted by bluesky

You made my day. You don't think I'm crazy!!!

I'm going to keep trying as long as it takes to get an answer. This forum has given me the confidence to go on.

I called Dr. Howard's office this morning and they said that they're scheduling new patients 8-12 months out. Yikes. That's not what I wanted to hear! Still, I'm going to go ahead with the referral (I'm going to have to ask the mayo doc for a referral, I don't see any other way). I'm also going to get a referral to a doctor on the west coast that Dr. Howard recommended as a specialist. I hope he's nice. I hope he listens.

Don't worry, I'll keep an eye on the breathing.

nemsmom · 04-05-2009, 03:19 PM

Quote:

Originally Posted by bluesky

You made my day. You don't think I'm crazy!!!

I'm going to keep trying as long as it takes to get an answer. This forum has given me the confidence to go on.

I called Dr. Howard's office this morning and they said that they're scheduling new patients 8-12 months out. Yikes. That's not what I wanted to hear! Still, I'm going to go ahead with the referral (I'm going to have to ask the mayo doc for a referral, I don't see any other way). I'm also going to get a referral to a doctor on the west coast that Dr. Howard recommended as a specialist. I hope he's nice. I hope he listens.

Don't worry, I'll keep an eye on the breathing.

I haven't had much energy to read on here lately, I also have not been diagnosed with MG. But I live on the Oregon coast and am trying to figure out my weak spells. They are looking into MG possibly but right now test results aren't helping and I don't think I've been tested for antibodies. Would you mind sharing the name of the doctor on the west coast that Dr Howard recomended?

I can't afford to travel across the country to get a diagnosis but I also can't afford to keep being told it's nothing physical by some doctors and being told there is something physically wrong, I just don't know what by other doctors.

I hope you get your answers soon.

Kristie

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