Anyone with similar symptoms?

[Mon]

Hi Everyone,
Thanks for approving me!
I was diagnosed with ME/CFS just over 1.5 years ago.

Gradual onset with no known cause.

I am one of the lucky ones in the mild group. I’m working part time.

I have orthostatic intolerance which has been much improved with mestinon. But gets worse if I overdo it.

What I can’t understand is that while many ME/CSF patients report difficulty with speaking due to brain fog or fatigue.
I do not feel fatigue.
Since starting mestinon I do not have any cognitive problems.
My facial muscles and tongue get tired.
My difficulty moving them causes slurred speech, my left side of my face will drop.

I can only walk very short distance. It’s getting harder for me to stay working. My physical limitations are starting to take more away from me. I parked outside of work today and counted 14 steps before my legs started to go. 34 steps to the building were a struggle. I recover when I’m in with sitting in my office chair with wheels and zoom around my room to recover my walk. I can hide the mobility issues with keeping my steps low.
A big smile and make up cover a multitude. But when my speech starts to go there is no hiding it.

My wonderful Gp/ family physician has been a lifesaver. He has been the most understanding and supportive person. He totally gets ME/CSF. He encourages me to pace and try to keep in my energy envelope. He has not met anyone with Me/CSF with the facial symptoms that I have. He tested for myasthenia gravis and had neurology see me again. They say ME/CSF. My neurologist has never seen anyone with my facial symptoms he told me that I’m not the only one with it, nothing he can offer to stop it or help it. My Gp suggested LND to try. Expensive with no proven results. I’m on 9 mg at night. I think it gives me a bit of a buffer with pacing but no miracle!
So after a very long winded post. Has anyone else got the face issues that I’m dealing with? If so I would love to know what helps other that not talking.

Any response would be very much appreciated!

 

[Ughhh]

Hi,

My left eye has been increasingly droopy. I saw a neurologist who thought it was due to migraine like symptoms, sometimes that can cause ptosis. But no one really knows.

I think the energy envelope and pacing is good to be aware of and try to work with. At least the idea of trying to rest more. I took a pacing class and one thing they recommended was just laying down for ten mins a few times per day intentionally and I had never really thought of doing that.

I take LDN and I ordered it online from agelessrx it has been pretty cheap that way I think its $100 every few months something around that.

Take care!

 

[Wayne]

Any response would be very much appreciated!

Hi @Mon -- It sure sounds to me like you've got some kind of cranial nerve involvement. Your particular symptoms sound a lot like Bell's Palsy. As I recall, this is often caused by Lyme Disease. Again, as I recall, it can be a result of structural issues.

The cranial nerves exiting through your brainstem may become "crimped", as was the case for me for decades (mine resulted from a whiplash injury as a teenager). I was eventually able to get significant relief using a variety of modalities. -- Take care!

 

[Baz493]

Hi Mon, You could also try taking a look at amyotrophic lateral sclerosis, myasthenia gravis, or muscular dystrophy. The speech difficulties you mentioned are called dysarthria. This article contains a short list of conditions which are generally associated with the condition. https://www.mayoclinic.org/diseases-conditions/dysarthria/symptoms-causes/syc-20371994 The physical issues can be related to the speech problems via muscle function.

 

[Creekside]

I believe that ME affects different parts of the brain, depending on individual characteristics. Your ME might be affecting the neurons and nerves involved in your face/mouth muscles. Do the symptoms correlate with your general ME severity?

LDN is a bit tricky with dosage. There's a fairly narrow window of dosages that will be effective for an individual. For me, 2.25 mg provided full effect, but 2.0 mg had nearly no effect. Above 5 mg it started losing effectiveness. 9 mg probably wouldn't have worked for me. Other people report using fractions of a mg. My recommendation is to experiment with different dosages; maybe there's a dosage that will work for you. For me it only blocked my ME pain; no other symptoms were affected. It was very effective at blocking that neurological pain.

FWIW, I found that if I took it sublingually, I needed only 2/3 of the dosage if swallowed.

 

[Mon]

my cousin has the same symptoms

 

[Mon]

Hi lily, not a lot of information in your reply! Do you and your cousin have ME/CFS?

 

[Mon]

I believe that ME affects different parts of the brain, depending on individual characteristics. Your ME might be affecting the neurons and nerves involved in your face/mouth muscles. Do the symptoms correlate with your general ME severity?

LDN is a bit tricky with dosage. There's a fairly narrow window of dosages that will be effective for an individual. For me, 2.25 mg provided full effect, but 2.0 mg had nearly no effect. Above 5 mg it started losing effectiveness. 9 mg probably wouldn't have worked for me. Other people report using fractions of a mg. My recommendation is to experiment with different dosages; maybe there's a dosage that will work for you. For me it only blocked my ME pain; no other symptoms were affected. It was very effective at blocking that neurological pain.

FWIW, I found that if I took it sublingually, I needed only 2/3 of the dosage if swallowed.

Thanks for sharing. I’m beyond fed up with having this if it is this condition. I’m rattling with medication and nothing seems to help. I think I’m just throwing away money with the medication side. But afraid that I will get worse if I don’t take what I’m currently on.

 

[Mon]

Thanks for sharing. I’m beyond fed up with having this if it is this condition. I’m rattling with medication and nothing seems to help. I think I’m just throwing away money with the medication side. But afraid that I will get worse if I don’t take what I’m currently on.

I should say that my symptoms correlate with nothing. I am just becoming more disabled as time goes by and I have No cognitive impairment whatsoever. I don’t even feel tired. I do fatigue but that is because the effort to move my body is so great that I tire from it.
Early December I thought id have to get a wheelchair it was so hard to move. I pushed through and found the more I did the better my legs got. Goes against everything I’ve read about ME/CFS. I’m totally at a loss. I can loose my swallow even when I’m at my best. I feel very well only my body won’t work

 

[tatt]

How can you not walk far but not feel fatigue, what stops you walking?

Your face sounds like Bells Palsy, so that may eventually improve by itself.

 

[Mon]

How can you not walk far but not feel fatigue, what stops you walking?

Your face sounds like Bells Palsy, so that may eventually improve by itself.

I can’t walk far because something happens to my legs. My toes drop down to meet the ground first, I have to think how am I going to move my legs forward. I loose automaticity of walking. I have noticed that when I take my socks off that the muscles in my feet are rippling on their own. I think this is happening when I walk. I get loads of fasticulations all over my body but I’m aware of those I just wasn’t aware of the ones in my feet before I saw them. My muscles stiffen and that’s why I can’t walk for long. I have loads of energy and I’m still working part time. No cognitive issues just muscles in face and legs that won’t do what I want them to.
It’s driving me nuts. If I sit for too long it also takes my walk from me. So I’ve recently ignored all the neurologist told me and started to push through I improved my walk a bit by doing this! I’m just interested to see if anyone else has this problem.

 

[Creekside]

I think I’m just throwing away money with the medication side. But afraid that I will get worse if I don’t take what I’m currently on.

That's a tricky issue. My view is that if a drug doesn't provide a significant benefit, it may be doing more harm than good. If someone says that in theory it should prevent worsening, I'd ask for evidence that the theory applies to PWME, because we still have no reliable theories about ME's mechanism. With ME, what works well for one person, does nothing for many others, and causes harm for some others, and there's really no way to know in advance.

If the drugs you're taking are for a different disease, and it doesn't worsen you ME symptoms, it seems reasonable to keep taking them, since theories might apply to that other disease, and have reliable evidence to support its use. Taking a bunch of unnecessary treatments--supplements as well as commercial pharmaceuticals--makes it hard to know when one starts causing problems, and complicates trying new treatments. Maybe a new treatment should work for you, but one of those other treatments blocks it from working.

I've had ME since 2001, have tried lots of different potential treatments, took a few of the ones that did work for a while, and presently am not taking any (I no longer need the ones that did work). Even with the ones that worked, I tried to find the minimum dosage, to avoid side-effects or causing them to fail by taking more than necessary, which I think is a possibility.

 

[TJ_Fitz]

My mother has Bell's palsy, and the facial bit sounds like that, but not the rest.

Sounds like something is messing with the part of your brain that controls skeletal muscles, or perhaps the nerves along the way. Has your doctor looked at MS?

 

[Englishlady]

I don’t have similar symptoms though have experienced weakness and numbness on one side when having a migraine. It was worrying at the time.

I think in your position, I would want a second opinion from a neurologist.