Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

sb4

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@bensmith Is your mandible (lower jaw) maximally retracted when your teeth are clenched? By that I mean, if you where chewing down on something with your molars (teeth at the back of your mouth), could you move your jaw any further backwards (if you were trying to push your jaw back into your neck). Do you have clicking sounds in your jaw when chewing?

For me, because my maxilla (upper jaw) is small and hasn't grown out as far as it should (lots of people have this problem), I have to maximally retract my lower jaw (which has grown normally) in order for my molars to line up to chew food. I also get clicking because of this. The clicking is from the bit of collegen (?) that cushions the jaw getting squashed out of place when I clench my teeth because my lower jaw is too far back, when I open my mouth it pops back into the correct position and when I close to chew it gets squashed again.

I understand that having the mandible maximally retracted (pushed back) can cause pressure on the trigeminal nerve which could cause a bunch of symptoms.

Apparently the fix is relatively simple. At rest and any time you aren't chewing, protract (move forwards) your lower jaw by about 4mm or so. When I do this I no longer get clicking when opening my mouth. Apparently people have had there TMJ issues completely go away by doing this when many other things didn't work.
 

bensmith

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@sb4 i did not it started to get worsr ehen i started using a teddy bear under chin so ill try thisnthanks. I wonder if a dentist could give me some kind of gear. Surgery is obv out because if cfs.
 

valentinelynx

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Ty

@MikeC if you get in can you message a mod for me? Ive been waiting for months.
It is a very long waiting list. At one point a few months ago, they temporarily stopped accepting new members. As far as I know they are accepting new members now, in small groups at a time. I don't know what the current wait time is, but there's no harm in asking the mods for an update.
 

valentinelynx

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@valentinelynx guess i need to find out who they are and send them a message. Seems weird how much could it hurt to allow new members.
Well, the way it looks to me, to suddenly admit several thousand new members would kind of overwhelm the group! It's already quite overwhelming and the mods are working very hard to keep it useful and organized, so that the same question isn't asked over and over again. It's really quite a huge endeavor. Let me check into the group and I'll see if I can get you some useful info.
 

valentinelynx

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Well, the way it looks to me, to suddenly admit several thousand new members would kind of overwhelm the group! It's already quite overwhelming and the mods are working very hard to keep it useful and organized, so that the same question isn't asked over and over again. It's really quite a huge endeavor. Let me check into the group and I'll see if I can get you some useful info.
OK, here's what I found out. The "About" section says they admit 50-100 members per week, and the current wait is 2-15 weeks (rather a large spread there!). There are some links to "pre-group" resources in the "About" section, which is visible to everyone.

The moderators include: Jen Brea, Dani Morsberger, Jay Be, Matt Sandwiches and Kristine Holst.

I hope that helps.
 
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Sorry if this is a dumb question, but for most people cci/brain issues are seperate to cfs? Im sure they play with each other, but like these are seperate things most of the the time? I know in jeff and jens case but others they are separate problems? Do we know?
 
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Ben, in my case they weren't separate. I actually had ME (CFS) long before I had my first surgery for a neurological illness called Syringomyelia (SM). I just assumed I was lazy and it was in retrospect that I knew something else was wrong. I never really recovered from that first surgery and had tremendous pain after it. Remember, though, this was way over 35 yrs. ago. I was one of the lucky ones, although it didn't feel it at the time.

Later I had brain surgery for an accompanying illness, Arnold-Chiari Malformation (ACM) and that was a pioneer surgery done by very few neurosurgeons throughout the U.S., and I had a much easier time of that surgery than the first. I had built myself up with good nutrition, vitamins and was much stronger & outside walking again. I was determined to be able to read and do all of the things I had to at that time of my life. My youngest daughter was leaving for college and I wanted her to see a fairly health woman upon her return from a long trip. My illness affected her very badly and we should have been in counseling. It would have saved a lot of heartache for everyone. Friends took her away at the time of my surgery and for a time afterwards.

So Jen and Jeff are very fortunate and I'm glad for both of them. I just hope this coronavirus attack hasn't been too much of a setback for Jen (if at all, I don't know). I think we each bring something to this illness. It's just not black/white. It would be so much easier if it was a one size fits all type of thing. Yours, Lenora.
 
Thanks for the interesting read everyone. My recent brain MRI revealed "mildly low lying cerebellar tonsils" which my neuro insists is not significant enough to qualify as Chiari malformation. Does it frequently take second opinions to diagnose Chiari, or should I take this guy at his word?
 

lenora

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Hi @mysticmagnolia....I would definitely get a second & possibly third opinion. I know for a fact (from volunteering with the org. for years) that the size of the Chiari doesn't matter when it comes to symptoms.

I've had the surgery for ACM, it stabilized me for the last 35++ yrs. (and was pioneering surgery at the time), but lots of people have also had it for much smaller Chiari. You know your symptoms...but do go to someone who specializes in this. It often takes a few doctors to get a proper reading of everything shown on MRI's.

Also, this....you should have your cord examined for signs of Syringomyelia. If one has Chiari the second sometimes follows. Chiari is a congenital defect, and SM often develops. You can have SM without Chiari say from an accident or the like, but Chiari is a sign that SM should also be tested for. Both problems can now be accessed from the brainstem, so only one surgery is necessary. Fortunately, it's the easier of the two, and doesn't leave you with the pain that cord surgery often did (a long time ago).

May I suggest that you go to Column of Hope and American Syringomyelia Alliance Project for the most up to date info on these problems. I understand that Dr. Bolognese is still reading MRI's at the Chiari Institute in NYC. That's something to look into....he had just started at the time of my surgery. Most of the ones I knew have now retired. There is someone in Dallas I could recommend, but apart from that I'm out of the loop.

One word of advice: Do skip the Mayo Clinic. Their neurology dept. just doesn't have it and this has been going on for many years. Yours, Lenora.
 
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Do any of you know how I can get an upright flexion MRI without having to pay out of pocket? My pcp refuses to write me an order and Dr. Chheda said she can write me one but that it won't be covered. I think I might need an MRI of my spine too because I now have absent superficial abdominal reflex. I had this reflex before becoming sick but now it's gone.
 

lenora

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Hi Mike....No, you'll probably be billed for the MRI. Don't just take their word on the cost though, but arrange a payment plan and they'll usually come off a considerable amount from the bill they would have sent you.

e.g. Our oldest daughter and her husband were caught in between insurance plans when she was expecting their second child. The hospital wanted to charge her for delivery and the cost was something like $25,000 and they managed to get it down to $8,000 which is cheap considering that most cos. don't want to cover expectant mothers b/c of the problems a preemie may have and the cost to the company. She did have to pay for her own doctor's visits and anything else that was needed. Others on here may have other ideas, so wait for about 10 days or so. I'm sure Dr. Cheeda is correct. States vary so much in what the costs are...even from hospital to hospital there can be a variance.

If your income is low enough you can of course qualify for the county hospital. Usually the equipment is pretty good, but I'd check it out beforehand. I don't know if there is a difference in cost between hospitals and usually doctor- owned MRI clinics. Just make sure the machine you want is available (but then I didn't have to tell you that, did I?) Sorry, insurance is tough...wish I had better news for you.

CA probably offers more help than TX, so you have that going for you. Your monthly payments can be quite low. Yours, Lenora.
 
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Sorry if this is a dumb question, but for most people cci/brain issues are seperate to cfs? Im sure they play with each other, but like these are seperate things most of the the time? I know in jeff and jens case but others they are separate problems? Do we know?
It's still very early to say anything definitive about the relationship between CCI/AAI and ME/CFS. Having said that, from multiple anecdotes of people who were diagnosed with ME/CFS who clearly fit strict criteria (CCC, ICC) who have subsequently been diagnosed with CCI and/or AAI and whose ME/CFS symptoms have largely improved after fusion surgery, it appears that either CCI/AAI can cause ME/CFS symptoms and/or that ME/CFS can lead to such structural issues (perhaps through damage to ligaments in the craniocervical junction. It's known that infections can damage these ligaments, as can other causes of inflammation (e.g. rheumatoid arthritis) so it's not out-of-the question that ME/CFS could precede CCI/AAI. It also appears likely that people with pre-existing connective tissue diseases such as EDS are prone to both ME/CFS type symptoms and CCI/AAI. So, it's definitely messy and I don't think it makes sense to say that ME/CFS is independent of CCI-type issues, but that these things are intertangled.
 

lenora

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Hi @valentinelynx. That's not a dumb question at all.

In my case, ME preceded the discovery of my neurological conditions. Since I was still young, I wasn't aware that I'd had it for some time, but it was definitely worsening plus now I was exhausted beyond belief....so I sought help from many places. No one knew, until I hit upon my neurologist.

After my surgeries, something was still not right....recovery was slow to non-existent for the first, plus I also caught a virus from my husband. My physical therapist (myofascial therapist...we should never have straight physcial therapy) thought something else was going on. My neurologist was the one who told me I had ME (CFS/FM then). He also said this, and I knew it was true from the patients he had in his office, most with severe illnesses: In his opinion, anyone with brain or spinal cord problems had ME or was much more likely to do so. When you're younger and able to battle it off b/c of a stronger immune system and especially if you'd been physically active, you can even reach a certain level of physical activity such as walking, but you'll never be without some problem or another. All these years later, he was so right.

I was lucky & found out early. But even at that, and before discovery of my other problems, it never went away. Certain aspects did and over the years it has changed in form. However, it's always with me. I'll soon be 74 yr. of age and I can only suggest that you keep loosely moving as much as possible. Walk, if you can, even if it's around the house....it's good to keep the body limber. As we age it's hard to do so if we're ill. I'm not saying to do heavy exercise, but if you can walk to the bathroom, then walk to the kitchen, etc. Take it as far as you can. Yes, it hurts....but letting yourself get all tightened up hurts a lot more. Each time I have a problem, I'm weak when I begin. There are definitely people who can't/shouldn't leave their beds and they certainly know who they are. I exercise, but now find my knees are giving me trouble. I do some chair yoga, but am working on doing more. I've started climbing steps 3 at a time again (while always holding the handrail). Ice helps immensely with the pain (and there's a lot of it). I wish you well. Yours, Lenora.