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Ehlers-Danlos Syndrome Online Support Group

EDS and neuro conditions linked


#1

EDS and neuro conditions linked

Posted by Zebra on February 23, 2016 at 5:36am

Thanks for the welcome, you must excuse my typing wording as get brain fog a lot.

Does anyone else have the HEDS with POTS! as having a small worry at moment just had to have all my autonomic testing repeated as now have about 10 conditions which can be put down to neurological, I suffer with GI dysmotility, visceral involvement of the bladder, heat Intolerance (hot and cold), hate bright lights or driving at night, vascular fragility, joint dislocations and subluxation of knee, hips, pelvis, sacrum, elbows, tachycardia and blood pressure yo yoing, most recent hair loss. Ya da etc.

The autonomic people said I reacted to the thermo reg sweat test and tilt, causing tachycardia 1500BPM+, blood pressure, and don’t cool down through head like meant to.?.. does this make sense to anyone. Just symptoms worsening year on year, even month , so it’s all a bit much as moment keep being diagnosed with dysmotility or dysnergia etc then because of EDS they can’t help.

The only othe thing I ain’t moaned or mentioned to consultants as docs laughed is I keep getting tingling like static shocks in arms a lot more than I used to, followed by weakness, also tried explain that a recent MRI and CT showed disc degeneration in cervical alongwith loss of disc height, and a disc bluge in lower spine.

Any o e got any suggestions on treatment or just someone else who understands?

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Replies

Zebra ·February 29, 2016 at 8:58am

Dear mod support think we need to wake some people up?, thanks to support given.

ModSupport ·February 28, 2016 at 8:51am

Oh the power of the internet to connect people! I’m so glad that you, Waterswaves and Spammy were able to connect and share. The community is a bit quiet and a bit small, but I’m hoping that over time we will see a bit more activity here.
Seenie

Zebra ·February 27, 2016 at 3:40am

Thanks so much for your support, everyone. Finally, can talk to people that get it, even just the simple stuff. The response is really the sweetest thing. What are symptoms of the chairiri thing, might be a load of totally unrelated issue but when looking at armpit to shave etc, or twisting head down and around, it causes immediate faintness. I also suffer with migraines, my head feels so full of pressure, and painful to touch. Oftern the sumitriptain dont work, but diazepam will.? Should explain why i named myself Zebra, even my old pain specialist used to call me his fragile flower! Lol. Waterwaves can you help any more? you seem to understand the neuro bit a bit more, . Please, and big thanks.

Waterswaves ·February 26, 2016 at 9:20pm

Hi Zebra, I have HEDS and also have POTS symptoms and am thinking that I may need to be checked for Chiair. I haven’t thought to see someone for autonomic function until i saw your post. Chiari can cause these types of issues too. Sometimes it only shows up on an upright MRI though because of the position the brain is in. One of my friends has Anrold Chiari malformation. The hole in his skull that allows the spinal column to pass through is too big. This causes the brain to sag down and can cause a lot of issues. I’m having a popping in my head back there so I think Chiari needs to be checked and maybe CSF leaks are possible. Some people with EDS have issues with cerebral spinal fluid leakage. Big hugs and I’m glad you found us here. I haven’t talked much in a while due to family and health but will try to talk more. Big hugs to all who need one.

Moderator

Michaela ·February 25, 2016 at 9:22am

Hi Zebra and welcome! I’m sorry that you’re dealing with so much. Life is always interesting with EDS and all these other conditions that come along with it! Honestly static in the arms is a symptom usually related to fybromyalgia. You might want to check that out to see if that matches. Sadly there isn’t much for treatment but that is another condition that is a very common in relation to EDS.

Zebra ·February 25, 2016 at 3:02am

Nice to hear some one else knows parts of my conditon, and understands. I had mri done to to suspected cauda equine syndrome suspected luckily for once it wasn’t. BUT, I have disc bulges on L4/L5 and L5/SI joints. My pain specialist has said due to the fact my lower spine, Sacrum, SI joints, and Pubis are all very unstable, that they can shift and place pressure on disc bulges more easily than a Normal person. Therefore compressing area, or causing pinching. Also interestingly the dysautonomia symptoms have worsened in last couple of years, I did complain about electric shocks in arms, and heavy legs (now can’t straight lift R leg at all now) on recent MRI now showing disc degeneration on cervical spine and loss of disc height?! I personally think might be connected. They say POTS only affects pulse my BP yo yo’s. Anyone out there having had experience, trying to prep for Neuro follow up, so i can follow conversation with them. Cheers

Spammy ·February 25, 2016 at 12:30am

Hi Zebra,
Glad to see you figured out how to start a new discussion. :slight_smile:

I think I might have hyperadrenergic POTS, but I can’t find a doctor that will test me. So far 2 cardiologists and 2 neurologist have dismissed my concerns and said I don’t have POTS or dysautonomia without testing me.

I’ve had increased pain going down my legs and I have severe back pain, so I did an MRI last night. I’ll find out next week if anything shows up on the scan. 2 years ago the MRI showed 2 bulging discs pressing in the sciatic nerve. I hope it didn’t get worse, but my pain is very bad and sometimes I cannot sleep at night.

With all those medical conditions, it sounds like you’re in the right place in here with us. Welcome to the group!

~Spammy

ModSupport ·February 23, 2016 at 2:13pm

Zebra, you really are … um … medically “interesting” aren’t you? Just what NOBODY wants to be. Anyway, welcome to the EDS forum. We’re glad you found us, glad to have you and we hope that you will be glad too.
The board is very quiet at the moment. My name is Seenie, and I work all over Ben’s Friends’ network supporting and helping the moderators on each community. If you don’t hear much from your fellow EDS-ers in the next few days, come the weekend we’ll see about doing a “broadcast”, which sends a message to the inbox of each member. That works best towards the end of the week, when people may have a bit of time to answer on the weekend.
Meanwhile, make yourself at home and we’ll see what happens!
Seenie from Moderator Support


#2

For those of you that have found good doctors that listen and help, where are they?? I live in Northern Va/DC area and we drove all the way to Ohio to the Cleveland Clinic because no one wants to touch me with all the medical problems, and I see you all are in the same boat as me (multiple medical issues, rare relief), and a standing MRI? thank you! that’s a cool note, but where on earth do you find these good docs? I’ve seen hundreds of doctors it must be in the past 10 years. Was finally diagnosed with severe POTS after nearly dying, doc could have sent me referral to specialist for that awful tilt table test months before…hmmm… well you all know how frustrating it is. the pain levels have been so high that I haven’t had to take my meds for POTS then last night in the shower every time I stood I blacked out, so I had to have a bench, then I stood to finish and I woke up in a ton of pain after passing out and hitting a bunch of stuff. I have EDS also major motility issues, right now they have me with an ileostomy, and it has caused the EDS to go bonkers in my small intestines, it was all ready bad in the colon… My organs are literally falling out, cervix, rectum, and everything from pelvic floor down is prolopsed badly.
No luck with Ohio, now needing to find someone else who can figure my weirdness out. i have the chronic migraines, crazy sudden allergies to everything, leaking/busting veins, the same bulging and herniations in neck and L3-sacrum, I totally get it, and the pain never ends. I started with the electric shocks and they still come, but last night I lost all feeling in my arms, I had to call for help, I couldn’t see, couldn’t seem to move, and couldn’t feel and move my arms with nothing. Anyone had this?
Zebra I do get it diazepam is better than the help of the others they have tried, but meds are a tricky business with me too :slight_smile:


#3

Hi there. I just joined and was going through the forums and found this discussion. I also have autonomic issues. There seems to be a very common link between EDS and POTS, along with many other autonomic symptoms.

I actually was just diagnosed with EDS (clinically) in May by my neurologist. Now I’m on a two year wait-list to get in to see pediatric genetics. We are working on getting a prior authorization to do the first round of genetic testing in the meantime. So frustrating!

I’ve been to Mayo Clinic in Rochester, MN and they have a good autonomic clinic. However my experience with the neurologist was less than desirable. Our insurance changed last year and now we are going to Froedtert Hospital/Medical College of Wisconsin in Milwaukee and they have a phenomenal program!