Connective tissue problems?

[Konflict]

Hey all. Been on a very steep decline for the last year and do t have any clue what to do.

Last year I took methylfolate, methyl b12, p5p, riboflavin and vitamin E together to try and get my energy levels and muscle gains up (have had some thyroid issues for years despite normal testing). A few weeks in and I feel like I have a bad flu, after a gym session I took my nitric oxide and had some weird dopamine rush I've never experienced before, so I stopped everything cold turkey. In January 2017 I took vitamin K2 for 2 weeks due to borderline high blood calcium, and after 2 weeks I had a "crash" that has left me in a downward spiral this whole year.

My symptoms incude: worsening thyroid symptoms like colder body temp, very thin skin, pale skin, tired all the time, not very good sleep, dry skin, body hair loss, weight gain (50 lbs this year)...other issues like digestion problems, slow growing hair/nails, smooth stretchy skin, gum line recession (very bad), brain fog through the roof, there's several more but the worst of all is the connective tissue disintegration I'm having. I've developed hypermobile joints in some body parts, and ALL my connective tissue seems to be disappearing including tendons and ligaments. Everywhere on my body clicks/pops/cracks including my spine and neck. My neck is very loose and feel I'll need spinal and neck reconstructive surgery to fix it when this problem becomes worse (which it will......it has NOT slowed down a bit since January).

I've seen some doctors at UCSF medical center and they say it's not EDS, but I'm not so sure. I had an appointment with a private wellness coach named Sean Bean and he is very intelligent, he believes I could have Lyme due to taking the methylated vitamins.....he said taking those is an open door for Lyme that's been dormant. I can't afford the testing out of pocket and can't have another appointment with him for the near future due to money issues (I'm broke as hell). I really feel this will kill me and don't know what to do. Does this sound like Lyme? Are hypermobile joints and total collagen loss normal signs of Lyme? Am I scaring myself thinking that eventually I'll dislocate my spine or neck? Any help or advice would be very appreciated.

 

[Deepwater]

Hi Konflict,
I'm afraid I'm not one of the many scientists on PR. I know a lot of pwME have hypermobility/ EDS - I do myself - but your problems have come on so suddenly I wonder if something has caused your body to become extra hungry for amino acids and start cannibalising itself. Maybe worth trying a high-protein diet and/or amino acid supplements?

 

[Hip]

Some of your symptoms are reminiscent of the Chinese "HIV-like" virus.

 

[kangaSue]

Have you had an ENA panel done looking for the usual connective tissue disorder suspects?
https://www.labtestsonline.org.au/learning/test-index/ena-panel

Vitamin C is very important for your connective tissue health too so make sure you are getting an adequate daily intake.

 

[jeff_w]

Hi, Konflict.

I have EDS. What you're describing is EDS -- you're checking off almost every diagnostic indicator. I have very little doubt that you have it.

I've seen some doctors at UCSF medical center and they say it's not EDS, but I'm not so sure.

I belong to several EDS groups on Facebook. Most of us have had doctors dismiss us and misdiagnose us. I was dismissed by Stanford's Marfan clinic that's supposed to diagnose EDS as well as Marfan. I wouldn't be at all surprised if the doctor who evaluated you is wrong. Being misdiagnosed is the rule, rather than the exception, with EDS. Most people are misdiagnosed more than once until a doctor finally gets it.

My neck is very loose and feel I'll need spinal and neck reconstructive surgery to fix it when this problem becomes worse (which it will......it has NOT slowed down a bit since January).

Am I scaring myself thinking that eventually I'll dislocate my spine or neck? Any help or advice would be very appreciated.

Your intuition about your neck is probably accurate, unfortunately. I had the same issue with my neck, and it came on very suddenly and progressed until I was entirely debilitated. Like you, I sensed that it was getting worse, and my sense was accurate.

I was hospitalized this year from May until October, due to my neck. EDS does this to necks. My official diagnosis was "occipitocervical dissociation" AKA "internal decapitation(!)." I had cranial settling, as well.

I went misdiagnosed for months, as far as EDS as well as the occipitocervical dissociation/internal decapitation. Not to scare you too much (but I want to scare you a bit): This can kill you if left untreated.

I was hopitalized for five months, after the problem progressed to the point where it was compressing my brain stem. Due to the brain stem progression, I couldn't be upright without experiencing paralysis, difficulty breathing, vertigo, and weakness that would make me collapse.

For months, I was hospitalized without answers, because I was continually misdiagnosed by Cedars Sinai neurosurgeons (and Cedars, like Stanford, is considered "the best.") Both Cedars and Stanford failed at this, until, finally, Cedars brought in their very top neurosurgeon. They let me languish for months in a hospital bed, 100% flat and bedridden, until they finally brought in their top guy, Dr. Johnson. Dr. Johnson ordered a flexion-extension CT scan and immediately diagnosed me with occipitocervical dissociation and cranial settling.

I'm scheduled to have a craniocervical fusion on January 31st. This will completely solve the problem.

In order to detect this problem, you need to have an upright, flexion-extension MRI. An x-ray won't cut it. An image taken lying down won't either. Without flexion-extension, the problem will be missed. So it has to be that exact test.

There are only three neurosurgeons in the USA who consistently diagnose this correctly: Dr. Bolognese (New York); Dr. Henderson (Maryland); and Dr. Sandhu (Washington DC). You'll need to send your upright flexion-extension images (the images, not just the radiology report) to one of them.

I know hundreds of people with this problem. It's common with EDS. If you're on Facebook, you should join the group called "Beyond the Measurement." You'll get a lot of info there, in addition to what I've written here.

Good luck!

 

[Gingergrrl]

I was hospitalized this year from May until October, due to my neck. EDS does this to necks. My official diagnosis was "occipitocervical dissociation" AKA "internal decapitation(!)." I had cranial settling, as well.

I was hopitalized for five months, after the problem progressed to the point where it was compressing my brain stem. Due to the brain stem progression, I couldn't be upright without experiencing paralysis, difficulty breathing, vertigo, and weakness that would make me collapse.

Hi Jeff, it is great to see you feeling well enough to post and I hope you do not mind me sharing that I had the great honor to visit you in the hospital and finally meet you in person after all these years! You never gave up, no matter what these so-called "best" hospitals did to you and are truly a hero.

I'm scheduled to have a craniocervical fusion on January 31st. This will completely solve the problem.

I am so thrilled that this will be happening and am praying that it solves your entire problem. This is such amazing news.

There are only three neurosurgeons in the USA who consistently diagnose this correctly: Dr. Bolognese (New York); Dr. Henderson (Maryland); and Dr. Sandhu (Washington DC). You'll need to send your upright flexion-extension images (the images, not just the radiology report) to one of them.

I am so glad you shared this info b/c it will help a lot of people who find this thread in the future. You are a trail-blazer and I am so happy for you.

 

[jeff_w]

Hi Jeff, it is great to see you feeling well enough to post and I hope you do not mind me sharing that I had the great honor to visit you in the hospital and finally meet you in person after all these years! You never gave up, no matter what these so-called "best" hospitals did to you and are truly a hero.

Thanks! It was awesome to finally meet you, even if it was in a hospital.

I am so thrilled that this will be happening and am praying that it solves your entire problem. This is such amazing news.

It seems too good to be true that the fusion could solve everything! But, based on my response to the halo, which mimics the fusion surgery, I'm thinking this could actually fix my entire illness. My ME/CFS was likely caused by ongoing brainstem compression, leading to profound fatigue, immune disturbance, post-exertional malaise, MCAS, and POTS.

Many people with Ehlers Danlos Syndrome have both POTS and MCAS. Both their POTS and MCAS usually improve after fusion surgery. Many people are completely cured. I've learned that our neurology is intertwined with our immunity. So, brainstem compression and other neurological issues can cause immunological dysfunction.

I am so glad you shared this info b/c it will help a lot of people who find this thread in the future. You are a trail-blazer and I am so happy for you.

Thanks. I think that many people who have been diagnosed with ME/CFS might have craniocervical instability. Even if it's as low as 1% (and I think it's probably higher), it's still a lot of suffering people. I'm going to work on spreading awareness of this, especially after my surgery.

Zody and I have been thinking about you today, and I hope that your Christmas was as good as it could be under the circumstances.

 

[ebethc]

Many people with Ehlers Danlos Syndrome have both POTS and MCAS.

what's the opposite of EDS? I'm so stiff all the darn time, and when I feel worse (usually due to a mast cell reaction, like now from all from all the winter time cali pollution...) my joint stiffness and pain is way worse (also sinuses, digestion... seemingly all connective tissue).. I've often wondered if I have a connective tissue disease

Thanks. I think that many people who have been diagnosed with ME/CFS might have craniocervical instability. Even if it's as low as 1% (and I think it's probably higher), it's still a lot of suffering people. I'm going to work on spreading awareness of this, especially after my surgery.

interesting... thanks for this info.

 

[jeff_w]

what's the opposite of EDS? I'm so stiff all the darn time, and when I feel worse (usually due to a mast cell reaction, like now from all from all the winter time cali pollution...) my joint stiffness and pain is way worse (also sinuses, digestion... seemingly all connective tissue).. I've often wondered if I have a connective tissue disease

You've just highlighted why so many with EDS are misdiagnosed by doctors who should know better: Not all with EDS are flexible. Many are stiff.

Joint pain and stiffness are common in EDS. The collagen deficit can lead to stiff joints rather than flexible ones. The "flexible" stereotype doesn't always apply by any stretch, especially in people over 30. There are EDS groups on Facebook that will give you a broad perspective on this.

 

[ebethc]

You've just highlighted why so many with EDS are misdiagnosed by doctors who should know better: Not all with EDS are flexible. Many are stiff.

how would someone get diagnosed then? I thought diagnosis is showing the doctors your hypermobile joints.. thanks.

 

[jeff_w]

how would someone get diagnosed then?

They don't, unless their hypermobility is obvious.

I thought diagnosis is showing the doctors your hypermobile joints.. thanks.

Most of the time, that's exactly what a doctor will want to see, and you'll be dismissed if you don't have it. The problem is, there are systemic manifestations of EDS (POTS, MCAS, GI disturbance, etc.) that should be considered in diagnosis, but they aren't yet.

 

[dannybex]

I had an appointment with a private wellness coach named Sean Bean and he is very intelligent, he believes I could have Lyme due to taking the methylated vitamins.....he said taking those is an open door for Lyme that's been dormant. I can't afford the testing out of pocket and can't have another appointment with him for the near future due to money issues (I'm broke as hell). I really feel this will kill me and don't know what to do. Does this sound like Lyme? Are hypermobile joints and total collagen loss normal signs of Lyme? Am I scaring myself thinking that eventually I'll dislocate my spine or neck? Any help or advice would be very appreciated.

@Konflict I'm curious what references Mr. Bean showed you that backed up his claim that methylated viatmins caused any possible lyme you may have, or may have had, to become 'activated'? I just listened to a video of his, where he talked about losing 1/3 of his muscle mass, then (paraphrasing) said most of his patients didn't need any methylation, but when he was asked later, said he did need to deal with methylation in order to recover.

It was an incredibly jumbled, difficult to follow interview, and he often couldn't even pronounce the words he was using (like 'methylization', 'nucular biochemicyst', etc.,) confused lactulose with lactose intolerance, and never really explained how he turned around his own situation where he said his body was basically 'feeding off itself'.

I've lost a lot of muscle so I'm intrigued a bit by his story, but he talked in circles so much, that I'm not sure what to think. Perhaps it's his asperger's getting in the way, but for that kind of fee, I'd expect some clear, concise explanations, backed up with at least some studies or research.

???

 

[Gondwanaland]

Occipital horn syndrome

 

[Starsister]

Hi, Konflict.

I have EDS. What you're describing is EDS -- you're checking off almost every diagnostic indicator. I have very little doubt that you have it.



I belong to several EDS groups on Facebook. Most of us have had doctors dismiss us and misdiagnose us. I was dismissed by Stanford's Marfan clinic that's supposed to diagnose EDS as well as Marfan. I wouldn't be at all surprised if the doctor who evaluated you is wrong. Being misdiagnosed is the rule, rather than the exception, with EDS. Most people are misdiagnosed more than once until a doctor finally gets it.



Your intuition about your neck is probably accurate, unfortunately. I had the same issue with my neck, and it came on very suddenly and progressed until I was entirely debilitated. Like you, I sensed that it was getting worse, and my sense was accurate.

I was hospitalized this year from May until October, due to my neck. EDS does this to necks. My official diagnosis was "occipitocervical dissociation" AKA "internal decapitation(!)." I had cranial settling, as well.

I went misdiagnosed for months, as far as EDS as well as the occipitocervical dissociation/internal decapitation. Not to scare you too much (but I want to scare you a bit): This can kill you if left untreated.

I was hopitalized for five months, after the problem progressed to the point where it was compressing my brain stem. Due to the brain stem progression, I couldn't be upright without experiencing paralysis, difficulty breathing, vertigo, and weakness that would make me collapse.

For months, I was hospitalized without answers, because I was continually misdiagnosed by Cedars Sinai neurosurgeons (and Cedars, like Stanford, is considered "the best.") Both Cedars and Stanford failed at this, until, finally, Cedars brought in their very top neurosurgeon. They let me languish for months in a hospital bed, 100% flat and bedridden, until they finally brought in their top guy, Dr. Johnson. Dr. Johnson ordered a flexion-extension CT scan and immediately diagnosed me with occipitocervical dissociation and cranial settling.

I'm scheduled to have a craniocervical fusion on January 31st. This will completely solve the problem.

In order to detect this problem, you need to have an upright, flexion-extension MRI. An x-ray won't cut it. An image taken lying down won't either. Without flexion-extension, the problem will be missed. So it has to be that exact test.

There are only three neurosurgeons in the USA who consistently diagnose this correctly: Dr. Bolognese (New York); Dr. Henderson (Maryland); and Dr. Sandhu (Washington DC). You'll need to send your upright flexion-extension images (the images, not just the radiology report) to one of them.

I know hundreds of people with this problem. It's common with EDS. If you're on Facebook, you should join the group called "Beyond the Measurement." You'll get a lot of info there, in addition to what I've written here.

Good luck!

Apologies if my question sounds dumb but I'm just now trying to learn more about hyper mobility as a chiropractor recently referred to me as that. I've been told by other body work folks that I am too flexible, but in the 4 minute conversations with MDs, there is never enough time to actually have a conversation or get a diagnosis, unless I diagnose myself and then they will write it down.
But is "hypermobility" the same as Eds? My joints go out constantly, even as I'm walking out of the chiropractors office, I move my leg to walk and there my hip slips out again etc. so frustrating. Even in bed just trying to turn over with weight of a blanket, or twice my hip has slipped out in bed just from moving my leg sideways to move a blanket off me. I could live at the chiropractors office.

Recently a new chiropractor did a full X-ray of my spine and I realized the extreme scoliosis I've must have had for years. My spine has been far more dibilitating then my CFS symptoms the last 15 years. Are spinal issues common with CFS folks or is this a completely different issue. The new chiropractor has a table that stretches the lower half of my body which seems to have given me some improvement from the constant pinched nerves and muscle spasms I've lived with for so many years. Is scoliosis related to the EDs or hypermobility? Maybe the hyper mobility is what has caused the scoliosis? Sorry for not being too articulate..I've never found a dr who would actually pay attention or connect the dots so Just curious on your thoughts and experiences.

 

[Konflict]

@jeff_w hey man thanks for the response. I've been ignoring support groups and other websites I'm too depressed about the progression.

First how did your surgery go? Also how long have you been experiencing EDS symptoms, and was there a trigger or have you had these issues since a child? I'm hoping the surgery went well for you.