It's not myasthenia - but what is it?

I ate something very off. My mouth started to feel plasticky. A few days later I couldn't clear my nose. My words became slurred. I feared a stroke - but the Dr thought it was just a severe throat infection. I had no fever. He prescribed antibiotics and steroids. I began talking like a deaf person - really nasal. When I drank it came out of my nose. I also had double vision. I started getting a weird tingling sensation in my legs - my whole body really. We went to casualty for CT scan, ECG, chest Xray, blood tests. All were inconclusive. I was referred to a neuroligist. I had pulsating going on in my limbs and head. I couldn't sleep. My arm would suddenly swell slightly then go down. It felt like I was fighting something. My rib cage seemed to expand and become rigid - my bra no longer fitted. I felt breathless. I started getting visual disturbances and ended up with complete lack of vision - my whole field of vision was taken up with psycadelic colours and shapes. My pupils were very dilated and remained so for 48 hours. My speech started to return. My MRI of my head was clear. I had the antibody myasthenia test and the nerve test - both clear. I am still quick to tire. When stressed my speech becomes slurred again. My Gp is checking out if I might have had botulism, but no one tested at the time. My hunch is maybe I've got something nasty going on with my thyroid - it seems very enlarged - the French GP thought I should have it Xrayed. All investigations seems to have concentrated on my head so far - could the probelm be elsewhere? Any possible things fdor me to suggest to the GP?neurologist to check out I'd be very grateful. I'm 44 years old, female with a 6 year old child and a busy business to run that supports lots of families. Really need to know what I'm facing so I can plan for the future.
Beverley

[cjzabel]

What did you eat?

[Quixotic1]

This has to be short, but as you described your symptoms I immediately thought "Botulism!"  even before you said it.  I actually don't know what all the tests for it are, but I agree with pursuing it.  In babies that have been poisoned by honey we find the toxin in their stool.  Being that you're already improving, I think you should probably continue to improve until all the toxin degrades and disappears.  This can be a very slow process.(ie. months)  Botulism preferentially attacks the cranial nerves and thus usually first affects speech, swallowing, tongue movements, facial sensation, eye movements, taste - many of the things you describe.  It then also attacks other spinal nerves and can cause paralysis, repiratory failure, problems urinating, severe constipation, etc, etc,

If your thyroid is enlarged you need a full thyroid panel and probably a thyroid scan.  If your thyroid is tender you may have thyroiditis which can be viral, bacterial or auto-immune.  It defintely should be looked at.

Yes, what did you eat?

Quix

[Quixotic1]

A couple things here

Please do not think that I "diagnosed" botulism.  It's just that your symptoms were pretty classic for it and I think it should be considered.

It is VERY unlikely to be the "off-tasting" food.  Botulism has no flavor.  It can only contaminate food which has been canned or vaccum sealed.  It grows only in conditions where there is NO oxygen (anaerobically).  As it grows it produces a toxic gas.  (It is a kissin-cousin to the bacteria that produces "gas" gangrene)  If you got botulism, it was something else that you ate - possibly in a larger amount.  So if there was also spoiled food at the meal, that restuarant has more than one problem!!

If anyone out there ever comes across a can or sealed container that bulges or releases gas or sprays when you open it (rather than the normal sucking in release of vacuum) DON"T USE IT!  Wash every surface that might have gotten any spray or liquid.  Wash yourself and change and bag  your clothes.  Call Poison Control for instructions on disposing of it.  If it's commercial the authorities need to track the lot down because it was improperly canned.  If it was home canned then the whole batch is suspect, and all the friends and family that received it could be at risk.

I hope all of your problems resolve.  The only time I ever treated botulism, it was in the 70's when babies were being poisoned by honey and ended up on ventilators for several months.  Quix

[Bevers2406]

It was supposed to be a warm chicken Caesar salad in a restaurant. I had one mouthful and I knew something was very wrong. The chicken was cold and just weird. I sent it back. The next one was very different. Whether it had been prepared for the last sitting in the restaurant or there was just something off about the dressing? But I only ate a mouthful of the chicken and didn't spit it out. I've read that the longer the time period for developing the symptoms, the lighter the dose. My first symptom - plasticky mouth - was four hours later. It took two more days to have the nose regurgitation, trouble swallowing and slurred speech. Two more days for it to get worse still with numbness and weirdness in the rest of my body and breathing difficulties. THen I peaked and started getting better.My pupils only dilated when I was at my worst and that's when I got visual disturbances. I've read that botulism is often misdiagnosed. Looks liek I may have had a lucky escape - just wonder if anyone else at that restaurant didn't and have been diagnosed MG or stroke - or worse has died.

[kla123]

In May you wrote "My Gp is checking out if I might have had botulism, but no one tested at the time." I would really love to know what result you discovered.  Was it botulism or something else?  I hope you are feeling better.  I have a similar problem and could benefit from your experience.