frustrated
 

Getting a diagnosis is really dragging out so much longer than I'd hoped. I just got word I tested negative for the anti-VGCC antibody. I've tested negative on the anti-Musk and AchR modulating, binding, blocking tests. I responded to Mestinon and Tensilon and have the SFEMG this Monday scheduled by the neuro at 9:30am, but I'm concerned.... What if I test negative for that, too?

I think I'd feel more comfortable (since I have home oxygen) cruising along without a diagnosis if not for the short-term disability appeal deadline looming. And the longer I go, the more financial strain I'm under without an income to pay rent & bills.

And if this isn't MG syndrome-related, then what is it? The unknown part scares me a bit since I don't know if this is something I can come back from (my mom had ALS so that's always in the back of my mind....)

I wish I could just the answers....

Who ordered the oxygen, as in an earlier post you stated you had "finagled" a script for it? Didn't you have a pulmo appt today? If so, what did he/she say? MG is not ordinarily treated with oxygen, and if you haven't been properly trained in its use and indications for its use, it can be a problem.

Getting a diagnosis isn't always easy, and you have a lot of other things going on as well. That all makes it more difficult, especially when multiple doctors/facilities become involved.

Good luck.

My primary doctor gave me a one-week prescription for oxygen and told me to pay out-of-pocket rather than using insurance since the oximetry isn't low enough to indicate breathing problems. Even though the prescription is for one week, the oxygen company leaves the machine for one month since they don't do weekly rentals. Since November, I feel all the time as if my throat is closing. It's been getting worse where I feel as if I'm being actively strangled, especially when lying down. Chest pain increases and spreads when I can't breathe, and I'm light-headed all the time without the oxygen (and with it if the setting is too low). I also sound all the time as if I've sucked helium. My voice returns to normal very briefly when I cough, drink or eat.

My primary doctor's dad has MG and says he has similar symptoms of throat closing and palpable popping sound when swallowing. I can tell my throat constricts because the oxygen doesn't get into my lungs very well, the oxygen access varies depending on how hard symptoms are hitting. I know it's not as common, but MG can affect respiration.

I had a pulmo appointment yesterday (I slept 7 hours straight after the appointment & another 4 hours today -- normally, I can only sleep 1-2 hours max at a stretch). I've got more lung function tests next week and a sleep study.

Understand frustrations on at least 4 different counts.

Make a concrete plan for your day on Monday after the SFEMG.
Take a good friend with. Use some time for processing time after the procedure.
Make a plan for the rest of the week as well.

Think about how it was in the days before internet. All those undiagnosed patients stranded alone
in different corners of the earth unable to connect with others with similar symptoms!

So if that test does turn out negative and you are in diagnostic limbo for a little while longer -
You still have our support :grouphug:

arg
 

Thanks. I had the SFEMG first thing this morning that came back negative, no evidence of an issue despite all the symptoms (including droopy eye & soprano, wispy voice changes during the appointment). The doctor said he's not saying I don't have MG or LEMS, just that he couldn't tell from today's test so he can't provide a diagnosis. He wants me to see an ENT doctor and maybe a GI doctor.

So far, my employer has denied an accommodation request for work off the phone. Today, I adjusted the request to see if the accommodation could be granted cutting hours to part-time. Stress levels would be much reduced if I had the short-term disability (I'm readying to submit appeal paperwork.) :(

Although other throat symptoms continue, on the plus side, the feeling of being actively strangled has gone away and I no longer feel the need for oxygen.

Hopefully someone can suggest some diagnosis other than MG. Your symptoms do not sound like MG to me. Typically the voice gets hoarse and raspy and weak, not soprano like. I really think it may be time to move on to other possibilities. I'd hate to see something else missed. I hope you get this figured out.

Do you struggle with anxiety at all? Some of the things you describe can be anxiety related, but other symptoms usually accompany the breathing symptoms such as heart palpitations, tingling in the extremities, and feeling of impending doom along with the light headedness, shortness of breath, feeling of throat closing, and chest pain.

Looking at the full list of my symptoms, it does sound like MG. And no, I've never had, nor do I now have, anxiety. No heart palpitations or tingling in extremities, nor feeling of doom. It drives me slightly crazy when people on this board propose 'anxiety' as a possible cause of my symptoms, I get enough of that crap from these dismissive doctors. Plus, I've responded positively to both Mestinon & Tensilon.

Periodically these past three months, my voice has gotten hoarse, raspy & weak. Now, it's moved on to soprano timber. The soprano sound goes away & returns to normal if I have something in my mouth (even the size of an almond), if I drink or eat, if I tilt my head back slightly, or if I burp or cough. The change lasts for 1-5 seconds before going soprano again.

As far as the anxiety thing goes.. I too get that from the dr's and it's so frustrating.. they say I look anxious... well HELLO.. OF COURSE i'm anxious!!!! I would need a psych consult if my body not working correctly, having difficulty breathing etc didn't make me worried and anxious! however.. it is a RESULT.. not the CAUSE of my symptoms.. which is what I think medical providers can have a hard time differentiating..

I have yet to see a person (or any living creature) with breathing difficulties (for what ever reason) who is not anxious about it.

The head of anasthesiology in a large hospital (not a hysterical woman) was accidently given a low dose of a muscle relaxant during an experiment he participated in.

This is how he described it:

Quote:

I was going to participate in an experiment that was meant to check the effectiveness of a new muscle relaxant we were going to use in our OR. I was going to be given a small amount of the medication into the vein of my arm, a tourniquet blocking my arterial and venous circulation was going to be put to avoid systemic spread. It was intended to be a very simple experiment with no risk at all. When given systemically, those medications lead to paralysis of all the muscles of the body, and therefore the patient has to be ventilated. The experiment was done in the late afternoon in the lab of the hospital. I was there alone with the lab technician. I was given a very small dose, but accidentally a few minutes later the tourniquet that was put on my arm got released and the medication started to spread into my circulation. I knew that with such a small dose I was at no significant risk. But, seconds later I started to feel that it becomes hard for me to breath and that my vision is becoming blurred. I told the technician that the medication was taking its effect and that she has to start using artificial ventilation. She left the room right away to bring the ventilator and call for help. the next few moments looked to me like eternity. I knew that within 4 minutes my brain will stop functioning I regretted my decision to participate in this experiment. I was horrified and felt relieved when the mask of the non-invasive ventilator was put on my face. The effect of the medication disappeared within a few more minutes, but I could not forget the horrible feeling-being fully aware of my surrounding, yet unable to breath or talk…

It is very frustrating when medical professionals dismiss symptoms of any disease as anxiety or depression if they aren't doing all they can do to find another cause. However they are actual medical diseases too, and since your physical symptoms do fit anxiety, it was just one other thing to mention and check off the list.