At first they had no idea what was wrong so I got worked up by a bunch of different departments. Pulmonology was first. I had a really low, a medium, and a couple of normal pulmonary function tests. Pulmonary stress test showed a severe drop in O2 at the height of exertion but they didn't know why so they sent me to cardiology, but the echo was normal. Then they started with the blood work. CPK came back very high. The first antibody test was negative and I haven't got the others back yet.

Regular EMG was normal, repetitive nerve study was within normal parameters, but the exam showed weakness in the face, arms, and legs so I got the mestinon trial and it works.

He said he'd try Tensilon and a single fiber EMG at my next appointment if the weakness is showing up more then. He didn't write me off, which was nice. It's amazing what a difference it makes to have even one positive test result. I went through years with joint pain but no test results and could never manage to get doctors to take me very seriously. They did eventually diagnose fibromyalgia but there was no sense of urgency. The doctors I've seen this year have been really invested in figuring this out. Which is both a relief and kinda scary.

That's great news Aand I. I understand how frustrating it is to be sick and not taken seriously. It sounds like you have your answer seeing the mestinon worked. I wonder if they will look at your thymus?

Fibro shouldnt cause joint pain. I wouldn't be surprised if ineveitably something autoimmune and inflammatory shows up as being what has been causing the joint pain. MG can cause muscle exhaustion I believe, but not so much pain except through muscle strain type,of,thing - but I am far from an expert,,I,have just begun reading.

The mestinon worked and I think that might be enough for my neuro-- he at least seemed convinced that something was going on. He was kind of a jerk honestly, although not to me. I don't mind and usually get along with people like that, but I think if he thought I was wasting his time he would have let me know. But I keep reading horror stories about people responding well to mestinon and having their diagnosis removed anyway and not being able to get it (or get in to see their neuro anymore), so that makes me a bit nervous. I assume if my blood test had been positive they would have called me.


The way I understand it is that the "joint pain" I feel is actually muscle pain. I used to think it was crap and that surely I'd be able to tell the difference but it's been 14 years and I'm willing to admit that I might have been wrong. My main argument that something else must be going on was always that I would have low grade fevers and swollen glands when I wasn't sick but was just tired and run down. My last rheumy mentioned that it could be similar to what chronic fatigue syndrome patients report. The fevers were never high enough to "count." I have a lot of other classic fibro symptoms-- muscle pains, tender points, chronic migraine, and pain when being touched. But fibro treatments have never worked for me. I take neurontin because they tell me I should be on it but it doesn't make any difference. And I've tried all the others over the years. For awhile I had a rheumy who diagnosed me with and treated me for seronegative lupus, but then we moved and I've never found another one who was willing to entertain that idea.

My main complaint right now is that my fibro (or whatever) is an illness that responds well to heat and poorly to cold. The MG symptoms seem to respond better to cold. So mostly I have to avoid extremes at both ends if I want to feel okay.

Anyway sorry I kind of hijacked your thread. :o The waiting sucks I know. I'm not sure how possible it will be to disentangle your symptoms since it sounds like you've got a lot going on.

Not hijacking at all A&I. Interestingly I have had chronic migraine for years too. Also can't do extreme temps, but the cryo may be to blame for that. I have terrible joint pain, muscle pain, and nerve pain - cryo related. Bedridden mostly.

So my test came back this morning. My neuro only ran one. I believe it was the ACTH or whatever, (not the musk), and it was negative, surprise surprise! I didn't think it was going to be an easy one off thing. I will be seeing a proper neuro muscular neuro on the 13th. Hopefully more help.

Weirdly, aside from double vision from both eyes, I also have extreme blurring from just one eye, even if I cover my eyes to try to make the double vision better. Have you had this? Or do you suffer from the eyes not converging at all?

I understand your frustrations working with a rheumy trying to get a diagnosis for your pain/fatigue. Most can't be arsed if the obvious tests don't come back positive. There are indeed plenty of conditions (such as lupus) that are sero negative and based on clinical diagnosis - if your neurologist is interested enough, educated enough, or cares enough to make one.

All the best.

Hi, Sandrine.

A negative MG antibody test doesn't mean much. There's the MuSK antibody test, and a load of other suspected targets in the neuromuscular junction that they either don't have tests for yet or haven't even discovered!

A good MG expert will do a thorough clinical exam, testing for fatigable weakness, which is the hallmark of MG. Do you know of one in your area?

You might not have MG, but "guessing" at that on the part of the doctor is not a good idea. New and undiagnosed MG patients are at risk of a MG crisis, which can be life-treatening. So if you can't swallow, breathe in or out well, or can't move well, that's the time to dial 911.

I'm not saying that to scare you, only to inform.

Some nerve conditions can be to cause for your symptoms. Multiple sclerosis, for example. A good primary doctor can ferret that out for you, too.

You wrote:

You can't separate out diseases when looking at any new symptoms, which I'm sure you know. Making assumptions only puts you at risk of not completely figuring out what is going on.

Have you tried some simple testing with your primary doctor, such as B12, Vit. D, thyroid, comprehensive chem panel, UA, ECG, etc.? Sometimes clues can come up on a thorough once over. Do you have any digestive issues?

MG double vision is binocular (sorry, JJ, but it is), and when you close one eye, the DV goes away. If yours is from other causes, a MRI might be revealing. If not, you could see a neuro-ophthalmologist to help you. They are not the same as regular ophthalmologists!

It would be a very good idea for you to make a list of what you know are Cryo symptoms, and write down any new symptoms, when they occur, etc. Not only will it help the doctor to see symptoms in black and white, but they might take you more seriously when there's a paper trail.

I have no idea if you have MG or not. As you said, you need to start with a good neurologist who will find an answer, not find a "not" answer. ;)

Good luck!

Annie

Thanks for your thorough answer Annie. I think you misunderstood what I was saying regarding my cryo though. I wasn't trying to separate the diseases, as I am very aware how entangled autoimmune conditions are, especially if you suffer more than one. I just meant that I didn't need the help with basic research on cryo that was offered due to having been diagnosed and treating it for some time, and quite up on the disease, it's causes and myriad symptoms.

I am having more and more trouble breathing, having dizziness, and I am hoarse all the time after just short uses of my voice. I feel very weird, almost like I am disconnected from my body, with extreme fatigue.

The convergence issue is one thing the opthalmologist diagnosed, and he also said I have a 'jerking' eye back and forth. My husband saw this today. He said when aI blink my eye will jerk back and forth suddenly. My lid is drooping all day lately too.

I will be seeing a neuro that is experienced in neuromuscular disorders in a week and a half. It feels like so long to wait.

Thanks for the help.

While those symptoms are going on, make sure that you take photos and/or videos of them! And then try to take shots when your eyelids are normal, too. Make sure that you take the shots in the same location (backdrop), with the same lighting and head tilt.

Even when you know a disease, it can always surprise you. That's why I said what I did. ;)

Annie

Thanks Annie. Yes, I had starting taking photos,of my lid droop. That is why the neuro and opthalmologist both suggested I test for MG. I am continuing to take photos of it. I have photos without it too. Often it is not so bad when I go in for an appointment, maybe because aI have spent less time reading on my iPad!

I joined a great FB support group for MG. Someome suggested trying the 'ice test'. Last night as usual the deoop was severe, so I tried it with a cool washcloth rather than ice which is contraindicated in cryo. After a few minutes of holding the cloth to my eye, I had a huge shock to see my eye popped wide open! It hasn't been that wide in years. I ran out to ask my husband if he noticed anything, and of course he picked it up right away.

This morning I took photos of my eyes. They look considerably more open than the evening before. It appears that both eyes droop, just one much more significantly. We also looked at pictures from 6 years ago. Some show the lid droop - particularly pictures when I'm not feeling well. I have been closing that eye to deal,with the double vision for some time. It has become most problematic now because both eyes are blurry on top of the double vision, so it doesn't help much to,cover an eye. Well, it helps somewhat, but my vision is still apalling. I have 20/20 vision according to opthalmologist. It just seems like I can't get my eyes to focus. I have tried moisturizing drops, everything. Very annoying!
Worst is that I used to be a singer songwriter. and given that I can barely talk for a couple of minutes without going hoarse, if feels like those days are over. I,was hoping that one day I would get my cryo into remission and I,would,get back into it... Those hopes,are,fading fast