Am I the only one?

[crypt0cu1t]

Was there a certain test or panel that revealed the AChR antibodies? I'm relooking through my all my labs now and don't see that one..

It was part of an autoimmune neurology panel that she ordered. I don't think it is a very common antibody in MECFS. She said its most likely LEMS based on my symptoms

 

[dreampop]

Am I the only one suffering from distorted/blurry/dark vision and head pressure? It comes along with severe derealization and confusion/difficulty moving certain muscles.

I have other symptoms too such as; dry eyes, dry mouth and a swollen salivary gland, but the above symptoms are the most worrying.

I have this as well. You need a spinal tap to rule on increased intracranial pressure. There's even some theories around that some CFS is caused by normal pressure on the scale but too high for the individual.

I don't have the problems with muscles but the nerves and muscles on my left side are very tight and tender regardless of what I do for them.

The blurred vision - is it actually burred vision or like the T.V. I have it like the T.V. It's worse in the bright daylight. Looking at the sky is depressing because it looks like I have 5% static tv filter on.

I also have a permanent pressure headache, 24/7, for many years that is like a swimcap around my head. Nothing to relieve this, but also nothing makes it much worse.

 

[crypt0cu1t]

I have this as well. You need a spinal tap to rule on increased intracranial pressure. There's even some theories around that some CFS is caused by normal pressure on the scale but too high for the individual.

I don't have the problems with muscles but the nerves and muscles on my left side are very tight and tender regardless of what I do for them.

The blurred vision - is it actually burred vision or like the T.V. I have it like the T.V. It's worse in the bright daylight. Looking at the sky is depressing because it looks like I have 5% static tv filter on.

I also have a permanent pressure headache, 24/7, for many years that is like a swimcap around my head. Nothing to relieve this, but also nothing makes it much worse.

Do you have Increased intracranial pressure? Your symptoms sound exactly like mine.

It actually looks like TV static and I cant really see in poorly lit rooms anymore.

 

[dreampop]

Do you have Increased intracranial pressure? Your symptoms sound exactly like mine.

It actually looks like TV static and I cant really see in poorly lit rooms anymore.

No, I had 2 spinal taps and both were normal for CSF pressure and clear of immune activity and infection. I also did not feel better from the spinal tap which might be a sign that is was too high. So the dx is just daily headache.

I also have really poor nightvision. In fact, it was my first symptom. Makes driving at night a pain.

There are some similarities but I don't have the problem moving muscles - there's a neurologic term for that (maybe minor ataxia?). I would def. recommend seeing a neurologist because that might give them some insights of things to look for.

The one other thing I have that's a bit unusual for CFS is very tight nerves, that often ache along my spine, where they come out, and then the ache dissapates like an inch out. But they stay tight, and I can feel this when doing nerve flossing in my arms and stuff. And if I lift they get crazy tight and all my muscles ache around them. The upper left side is just crazy messed up and pulling my head to the left usually. Also feels like a tethered spine but was negative for that.

So, yeah it's a mess of stuff, and I haven't been able to figure anything out unfortunately. Let me know if you do.

 

[crypt0cu1t]

No, I had 2 spinal taps and both were normal for CSF pressure and clear of immune activity and infection. I also did not feel better from the spinal tap which might be a sign that is was too high. So the dx is just daily headache.

I also have really poor nightvision. In fact, it was my first symptom. Makes driving at night a pain.

There are some similarities but I don't have the problem moving muscles - there's a neurologic term for that (maybe minor ataxia?). I would def. recommend seeing a neurologist because that might give them some insights of things to look for.

The one other thing I have that's a bit unusual for CFS is very tight nerves, that often ache along my spine, where they come out, and then the ache dissapates like an inch out. But they stay tight, and I can feel this when doing nerve flossing in my arms and stuff. And if I lift they get crazy tight and all my muscles ache around them. The upper left side is just crazy messed up and pulling my head to the left usually. Also feels like a tethered spine but was negative for that.

So, yeah it's a mess of stuff, and I haven't been able to figure anything out unfortunately. Let me know if you do.

Well for me, I'm assuming the aching muscles and difficulty moving muscles has to do with the AChR antibodies they found.

I'm getting checked for CCI and chiari, so ill let you know if that turns out to be anything. Have you had an MRI?

 

[dreampop]

Well for me, I'm assuming the aching muscles and difficulty moving muscles has to do with the AChR antibodies they found.

I'm getting checked for CCI and chiari, so ill let you know if that turns out to be anything. Have you had an MRI?

What lab did you use to get the test for the AChR antibodies?

 

[Michael_venice]

It's strongly connected to what goes on in my abdomen. Whenever I have burning pain and throbbing in my gut, I always get the head squeezing and sometimes the visual disturbances. I also get it from the tight muscles in the trapezius/neck, which can be aggravated by sleeping in a bad position or straining the neck. Both causes are somehow connected.

I haven't found a way to control it, unfortunately. This symptom goes through the roof during flare-ups.

Just saw this. Same exact thing here, I probably posted about it years ago. I don't think I had much from others experiencing the same thing.
I will say that I think Sunflower Lecithin helped with the head pressure/derealization. I didn't take it FOR that, but realized those symptoms and seizures I had for a long time had greatly diminished.

 

[Dmitri]

Just saw this. Same exact thing here, I probably posted about it years ago. I don't think I had much from others experiencing the same thing.
I will say that I think Sunflower Lecithin helped with the head pressure/derealization. I didn't take it FOR that, but realized those symptoms and seizures I had for a long time had greatly diminished.

Interesting, maybe it was the choline content in lecithin? It may have been helpful if some of the symptoms were related to not enough acetylcholine. I still haven't tried choline supplements, and there's the question of whether I need more or less of it in the first place.

 

[Mel9]

It was part of an autoimmune neurology panel that she ordered. I don't think it is a very common antibody in MECFS. She said its most likely LEMS based on my symptoms

Sorry: I didn’t know what AChR was when I first read this (acetylcholine receptor antibody).

So Now, finally, I understand what LEMS is (something similar to myasthenia gravis, perhaps caused by microbes involved in me cfs?)

It seems that This condition can be treated with pyridostigmine (Mestinon). Has your doctor suggested it?

My doctor asked me to try taking Mestinon a few weeks ago and It is now my ‘miracle drug’:

Mestinon is a cholinesterase inhibitor that helps keep acetylcholine in circulation. I feel remarkably better with this drug.

But, of course, it will not help everyone, only those with problems maintaining their acetylcholine levels.

 

[RUkiddingME]

That’s wonderful! May I ask what dosage of Mestinon you started on?

 

[YippeeKi YOW !!]

It literally looks like im looking through a TV screen or am constantly on some sort of acid trip

With me, it's like rotating, or fluctuating, telescoping vision ..... far away and smaller than normal, then blurry and slightly spin-y and closer to normal, then slowly receding into the telescoping mode, like looking thru the wrong end of binoculars. It makes gauging distances, even a small step forward, virtually impossible, and walking, perilous.

The muscle thing consists of spastic, slow responding, kind of jerky marionette stiffness, especially in the legs, that's probably comical if it isn't happening to you. And a slightly swollen lymph gland on the left side of my neck. Tight painful upper back muscles, mostly right side at the scapula.

I haven't found a way to deal with it, other than leaning back against a phalanx of pillows, drinking a lot of water, taking 50 mgs of magnesium glycinate and 500 mg Vit C and focusing on how much better I am than I was just 10-12 months ago. And how much worse it could be.

Yeah, I know. Happy talk. I'll take whatever.

If I can make it to the kitchen, I whip up some electrolytes, mostly potassium and a little sea salt (not because I follow trends, but because I like to avoid all the chemicals in processed table salt) whisked up in warm water with 3 drops of stevia, and I think it helps.

If anyone comes up with anything, please post.

 

[YippeeKi YOW !!]

TSH is not a marker of thyroid activity, it's only a marker of pituitary activity, so you can be hypothyroid with perfect TSH

When I said that exact same thing to a doctor I was trying to get to expand my thyroid tests from TSH, and " ... possibly fT3, fT4...." to something more useful, he rolled his eyes and muttered, "God, I hate the internet." At the time, I was using old-fashioned medical books, with minimal netsurfing.

If I'd told him that, I've always wondered if he'd have muttered, "God, I hate effing books" ..... which wouldn't have been a surprize, given the depth of his knowledge.

 

[Michael_venice]

Interesting, maybe it was the choline content in lecithin? It may have been helpful if some of the symptoms were related to not enough acetylcholine. I still haven't tried choline supplements, and there's the question of whether I need more or less of it in the first place.

That's my guess, and my doctor agrees. He's not up on Mestinon—and I'm not sure I put the pieces together on it, or whether I understand its mechanism + AChR antibodies. That is maybe the only test I have not had at this point.

What always kept me from Mestinon is that I really don't have any kind of classic POTS. I do have BP fluctuations, but not necessarily from standing (I know there's a spectrum and it can manifest in many—too many to even be clear—ways). And I just have had a standing impression that it's more for those type of symptoms.

I think maybe I should look into that. I can't be sure the Sunflower lecithin helped with symptoms, but the ones described here are so close to what I experience. Very often have tremendous all-abdominal pressure and swelling (*has been MRI'd when like this and it's just pure inflammation, there's nothing *there*, it just quickly bloats up. Also have been negative for even a hint of SIBO) when I have return of those neuro symptoms.

Most supplements I just take on faith/hope at this point, but something definitely decreased those symptoms considerably and it's really the only thing I can trace it to. To be honest, I still have way too much of that symptom cluster—but it did improve quite a bit.

 

[Mel9]

That’s wonderful! May I ask what dosage of Mestinon you started on?

I started slowly: 30mg Mestinon (used a pill cutter to cut one tablet in half) once per day.

I very gradually increased this to two 30 mg pills four hours apart. Then three 30mg four hours apart. I am now on four 30mg tabs four hours apart.

I had some side effects. First a stomache ache but that eventually stopped. I then experienced nausea and had to experiment with foods to decrease that. I found my nausea stopped when I stopped taking Trental (no idea why).

My worst mistake is to do too much now that I feel so much better because I can still get PEM (but a lot less severe).

This is still early days so I’m not totally confident it won’t fail eventually (but hopeful for a more healthy future)

 

[gbells]

Have you found anything effective at treating those symptoms?

Tooth brushing and flossing and anti-histamines.

 

[RUkiddingME]

I started slowly: 30mg Mestinon (used a pill cutter to cut one tablet in half) once per day.

I very gradually increased this to two 30 mg pills four hours apart. Then three 30mg four hours apart. I am now on four 30mg tabs four hours apart.

I had some side effects. First a stomache ache but that eventually stopped. I then experienced nausea and had to experiment with foods to decrease that. I found my nausea stopped when I stopped taking Trental (no idea why).

My worst mistake is to do too much now that I feel so much better because I can still get PEM (but a lot less severe).

This is still early days so I’m not totally confident it won’t fail eventually (but hopeful for a more healthy future)

T

 

[RUkiddingME]

That is wonderful! So happy for you and thanks for the info! Now to convince a doctor to prescribe it to me lol