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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Tags: eds heds neurology
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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.
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.
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
Glad to see you figured out how to start a new discussion.
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!
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