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Discussion Starter #1
Things with my health have been progressively getting worse over the past couple of years. I was diagnosed with Lupus and fibromyalgia in 2001. I was very involved with the Lupus boards for a few years and things started to get a little better with my health and I was dealing with the ups and downs of lupus and seemed to know what to expect from my flares etc.

About a year ago, I started having a whole lot more fatigue and weird symptoms. My rheumetologist tried to reduce my plaquenil to see if it would help the dizziness. When it didn't and my pain went up, I begged him to go back on the reg dosage. Well, I decided that I must need to suck it up and just deal with things. Things gradually got worse. A few months ago, I realized that it took 100% of everything I had to go get groceries or do one errand. I talked to my rheumetologist at my Jan. appointment and he ran a bunch of heart and lung functioning tests. Both were in the normal range although I nearly blacked out during the stress echocardiogram. It was strange. I wasn't on long at all and I started feeling dizzy and then I saw the dark fog going down over my eyes and knew my muscles were giving out. The lay me on the table and I was as close to blacking out as one could be and not. I lay there for a while and then felt somewhat better. I've been teaching half time and barely able to do that.

A few weeks ago, I had one eyelid droop and they thought I might have had a TIA. Then a couple of weeks after that, the dizziness got to the point where the rooms would just spin and I would throw up. The discovered inner ear damage. I have seen a neurology PA twice and although she was really nice and compassionate, I really thought she didn't have any idea what it could be. I asked her to test for APS and she said she'd also wanted to test for a rare disease. Well, she called today and in addition to the lupus etc., I have a rare neuro-muscular disease. 30-40 people out of a million have this. In a way, it is good to know, but I'm scared. I was so frustrated by knowing something was majorly wrong and having nobody be able to get it, but this is now real and I'm scared. The head of their neurology dept. wants to see me tomorrow to run more tests and talk about it.

A
 

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Hi Teachmom,

I can tell you that what you describe is almost a mirror image of myself....scary.

One eyelid drooping can also be Myasthenia Gravis (spelling???)

This happened to me in 2005 but I got the dx of Multiple Sclerosis instead. Turns out I dont have MS but Lupus and a few other things thrown in the mix too.:mad::mad::mad:

Sounds like your in good hands. Good luck with your appointment tomorrow and let us know how you make out. I am glad you found us here. You will love this place, the people, support, knowledge and compassion.:wink2::wink2:
 

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The Other Illinois Tammy
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It sounds like you have a lot to deal with and I do hope that you start to feel better soon. Finding out that you have yet another disease is very scary. Do you remember when they were looking for what was wrong with you and you got told you have lupus? I bet you were scared then also. If you did a search on the web you were more than scared. Look at how you have handle this. You found a way to handle it and to do what you can and live as full a life as possible. I am sure and have faith in you to over come this also. I know it will be very hard and that you will be affraid, that is why we are here for you day or night. Focus on the cans and not the can'ts, that will help some and please let us know how your appointment goes and if there is anything I can do for you. I hope you feel better soon and back to your normal self soon.
 

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Discussion Starter #4
She does think I have Myasthenia gravis. I guess it is caused by autoimmune antibodies that block neuro-muscular stuff. I keep telling myself that fear is worse than knowing, but it's tough as a single mom.

When I was diagnosed with Lupus, it was after a major two week hospitalization. I'd had some symptoms, but had to wait months to get into a specialist. I wound up having a HUGE flare and they didn't know what it was. I couldn't walk, sit up, or even pee for that matter. I was on major morphine and they didn't know what is was. My mom had died of a weird sudden on-set second documented case in the world disease so I was convinced I had that. I was hugely relieved that it was lupus. My dad had been diagnosed with lupus a few years before so I knew somewhat about it. I do think Lupus is different for a man and a woman... especially one who hasn't gone through menopause.

I should feel really lucky this doctor found this. I guess the fact that it's rare makes me now wonder about getting good medical care.

A
 

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Hi there,

I'm sorry to hear that you have yet another diagnosis to add to your list. I think there are a couple of people here who have Myasthenia Gravis as well.

Hopefully things will now improve symptoms wise with some treatment and you will learn to take it day by day just as you do the other things.

I was tested for this recently and yes, when you mentioned the drooping eyelid in your other post, I wondered about it too. Thankfully for me, my tests are clear.

hugs :hug:
Katharine
 

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Just wanted to add that I am so sorry that you have to deal with this as well. I have been tested for MG as I had some of the some symptoms, it was negative but I remember well what a scary time it was. I hope that your appt goes well, let me know how you get on. I will be thinking of you.

Hugs

Deb
 

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Hello TeachMom,

I am sorry you are in such a tizzy at the moment. It is quite understandable given all you have been through and the awful history with your Mum.

Try to remember you are just the same person as before you had a name for these symptoms. It is frightening but the fear will recede. I will be thinking of you.
x Lola
 

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Hi teachmom.

Just want to say that I am sorry that you are going through this on top of everything else.
I hope you have a positive neurology appointment and that they are able to start treatment soon.

Hugs
Elle x
 

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Discussion Starter #9
I'm back from my appointment way more confused and frustrated. I had convinced myself that it was good to have some kind of definative answer and that isn't what I came home with. The neurologist said that he wasn't certain that is what it is. He said that people with autoimmune disorders develope "all sorts of antibodies to funky things". He said that some of the things in my exam didn't fit although he did say that the fact that I'm on high dose prednisone (for asthma) could impact this. I have to have a CT scan with contrast to check for Thymus problems and Nerve/Muscle tests. I guess the muscle tests if they come back a certain way can tell for sure, but if they are negative, it doesn't mean I don't have this. I guess the really frustrating part for me is that if these two tests come back negative, then he doesn't want to see me for three months unless I keel over and get way worse. I didn't really like his bedside mannor. He made sure to add after the three month thing that if I suddenly can't breath as if I'm suffocating, that I need to go to the E.R. immediately because this is a bad disease and people can wind up on a respirator and ultimately die from not being able to breathe.

I have the CT on Thursday morning and the Muscle stuff on Friday morning so I will at least know the results before the weekend.

Amy
 

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Thanks! I guess I had my hopes way too high that I'd be coming home with some sort of treatment plan today. Nothing ever seems to be that easy. I guess I thought that the answers had already been a long time in coming. Part of it was that the Neurology PA I talked to yesterday told me that the test I'd had come back as a high positive was quite definative on it. I get that she might not have been as versed in the weird stuff autoimmune diseases can do, but it is still very disheartening.

Amy
 

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Well, I had my CT scan today to check for Thymus tumors etc. The results were o.k., but I had an allergic reaction to the contrast. Luckily I am on prednisone so it probabaly wasn't as severe as it would have been otherwise. I had hives and some wheezing, itching and tingling. They said if I have to have contrast again, I will have to have 40mg of pred 12 hours before and 2 hours before.

I have my EMG tomorrow. Luckily I know I'm not allergic to needles!

I read on several websites today including the Myasthenia Gravis of America site that if you have a positive test for Anti-Acetelcholine then it is a gaurenteed dx. I really think I need to get to a different doc soon.

A
 

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Hi Teachmom, remember me? I haven't been around a lot lately either. Just no energy to post very much.

I'm sorry to hear you're having such a tough time. And I'm really sorry you have to deal with a doctor who's a jerk. If you find that you're really afraid and can't find any peace, maybe you can find a counselor to talk with. It helps me when the fear wells up and I can't talk to family or friends because they don't really understand.

Keep posting and letting us know how you are. I'll pop on and check to see if you've updated. And if you want, pm me. I remember we were on here together for a long time and had some good chats. Just remember that people care and are praying for you and sending you good energy to you and keeping you in their hearts.

Sunny
 

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Hi Amy,

I'm sorry you are going through such a confusing and upsetting time with this :hug: I fully understand why though.

((((((Amy)))))) on the allergic reaction to the dye :( I wonder which dye they used, there are some pretty good ones they use on you these days if you are in any way an allergic person. They always use it with me and I have no problems, can't for the life of me think what it is though. They knew prior to administering it though they had to be cautious and they told me that is the reason I had this other type.

The other day I came across a site that said you can sometimes have those antibodies with lupus (and a couple other diseases apart from MG). It's the first I'd heard of it but it was a pretty reputable site. I will see if I can find the link for you.

love
Lily
 

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Discussion Starter #15
Well, I had my EMG today and the tech indicated that she didn't see anything for the first part of my test so I was gearing up for leaving things up in the air once again. She went to get the Neurologist to see if he wanted to do more muscles. She did my wrist and my neck. The test wouldn't have been a big deal, but they had to stress my muscles and then do repetetive electrical stim which was not fun. The neurologist walked in (VERY weird guy, but brillant from the tech's opinion). He did a couple of exam thing and was so convinced I had Myasthenia Gravis that he didn't even finish "his part" of the test. So I now have one more official dx and am looking into treatment options.

Amy
 

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Teachmom, I understand how frightened you must be by this new challenge, but the good news is now that they have an answer, you can be treated. It would be so much worse if they didn't have a clue and you continued to get worse. This is a good thing overall and I'm betting the neuro will be able to help you get your disease under control. Please keep us posted on your progress.
 

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Hi Amy,

I'm glad this Neuro is on top of things, sorry you have confirmation though :(

As Breanne said similar drugs to what we already use will help MG and it seems like there are quite a few options, something I was unaware of. I hope they sort out a good medication regime for you soon and that it works well :foryou:

love
Lily
 

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Discussion Starter #19
It is weird... I'm hugely relieved to know, but scared. I think that the first neuro who told me "You really don't want to have this because it is bad and you can wind up on a ventilator and die" really shook me up. As a single mom I feel like I have so much on my shoulders. I think once I get in to see a doc who really knows about this and I get a treatment plan, it will help a ton. I'm so glad to know there is a name for what has been happening to me and that they do have research as to how to treat it. It makes it a little harder that this is more rare than the lupus stuff because it's harder to find a doc who's delt with it much. After thinking on it this weekend, I have pretty much decided that I will likely go to Mayo clinic at least to get a treatment plan started. Mostly I need something to happen soon because I can barely walk and am not doing life very well.

Amy
 

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That neuro is an idiot. It serves absolutely no purpose to tell you something that MAY happen. You could also get hit by a truck because you're thinking about your problems and not paying attention, but that probably won't happen either. If he and the others do their job, there's no reason why you have to have a bad outcome. I think we've all run into self-important people who get their kicks from delivering bad news (even if it's an outside chance of happening). It makes them feel strong and superior, like they've got something powerful over you. Forget it. Your plan to go to Mayo is a good one and they will help you get this challenge under control.
 
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