Forum Replies Created
February 16, 2014 at 7:32 pm in reply to: Group of girls with EDS Hypermobility experiencing severe muscle spasms and contractions #4870
Hi Barbara, I’m not sure about it being muscle fatigue as mine starts within an hour of being out of bed but I suppose being right handed I am using that arm a lot so that’s enough to set off the spasms for the day. I have noticed since using the sling on the right arm for the last few days, no spasms are occurring.
Regarding fatigue, I have so much of this that I am even using a walker inside my house which was provided to me by a hospital physio. I’m currently on Canadian crutches outside the house but now the walker at home just to take pressure off muscles when going from room to room. Never thought I’d use it, but when he left it with me I tried it and it’s been great. The hospital physio explained that due to our lack of collagen in all parts of our body, our muscles are working so much harder that fatigue is a big battle for us. I find by 10ish in the morning I am shaking constantly when I stand and have been this way for many weeks now. I even use the seat on the walker just when at the kitchen bench so it’s saving on fatigue constantly. The hospital physio is recommending a walker for my car and a slim line walker for inside my home and is organising both for me to try out, so I’m going to give both of them a go.February 15, 2014 at 6:30 pm in reply to: Group of girls with EDS Hypermobility experiencing severe muscle spasms and contractions #4867
I’m sorry it’s taken me until now to reply. Barbara, my first thoughts in reading your comments are that it’s very possible you may be hypermobile as it’s common as a child to have the hypermobility and then to tighten up as an adult (although some of us also continue dislocating/subluxating). I can’t believe you had such a bad experience with the Neuro, but I have also had some terrible comments from Specialists who when I tell them I have EDS, have no idea what it is, let alone what it means. When you mention dropping things, that sounds possibly like a tremor, worth checking out as that was how I felt something was wrong and the first thing I mentioned to my Neuro before my terminal tremor was diagnosed.
Caroline, I wonder if you would consider talking with your Dr about B12 injections? I have been on them for 9weeks and it has solved all night time bladder issues. I have previously been on vesicare for a year to prevent getting up every 15mins to urinate and the B12 has really settled this (but I only went on it for energy increase). B12 has also improved my brain fog. It’s worth a try…
Opuntia, my spasms over Dec/Jan were really bad and I didn’t realise that the medication I was taking I was allergic to, so it was causing some really bad problems (which is why I have taken until now to respond). I’m now on another med that I take just as needed. The spasms still come but have settled so contractures don’t come during the night, just spasms during the day. My right shoulder is now fully dislocated (just waiting on xray to confirm) but can’t put it back in as it’s a very old shoulder!. It’s my dominant side and the side of all my spasms. Have been researching surgery and the info is not good for EDS. I now feel constant spasms from the shoulder down the arm but it’s manageable, in a tight sling which is great. Hope you’re all doing OK as well. LisaDecember 15, 2013 at 3:34 pm in reply to: Group of girls with EDS Hypermobility experiencing severe muscle spasms and contractions #4662
Thanks for responding and lovely to hear from you, just sorry to hear that you are also having similar problems to us. Do you also have EDS Hypermobility? Are you also in a similar age range to the girls in our group by any chance? I am actually the girl in our group having the severe spasms in my right hand (like you), which also travels up the underside of my lower arm into the socket of my shoulder and pull into my shoulder joint and then travels down the complete right side of my body. When my spasms are going they affect my thumb and my index finger pulling them into a complete claw. I have very strong pins & needles in both hands and feet, particularly the soles of my feet but no contraction spasms of these other limbs at this point in time although I have been having fast progression of these spasms just over the last 3 weeks. Thanks for your email and if you’d like to stay in touch, my personal email is firstname.lastname@example.org
I also wonder if you’re under a Neurologist and whether you have a terminal tremor in your right hand or otherwise known as an essential tremor as I had this picked up in early October (this is a tremor that is shown by the hand shaking and affects fine motor skills and an inability for the hand to accurately pick things up. I noticed in the lead up to going to the Neuro that I was often spilling food on myself which was very unusual and then found out this was the reason why.)
LisaNovember 6, 2013 at 4:05 am in reply to: just developed cataract & corneal transplant required #4567
Hi Dr Diana, Before my appointment I had already bought your book and had read about the cross linking, so I was seeing this Opthamologist to get to an eye surgeon for the operation. My next approach will be to contact Melbourne University where they have been holding all the clinical trials in Australia. By the way, is the worksheet that you mentioned for my Doctor in the book?
Thanks for your guidance. It was a one off to be at an appointment on my own and then for everything to go so wrong. I just wish instead of crying that I could have got really angry and given him a piece of my mind and then most importantly walked out, as he spent 30 minutes examining my eyes to then tell me I needed to drive an hour to his other offices to be put under other machines! Oh well. it’s done now and I learnt a lot from the experience. He could have been the first person I got to hit with my walking cane.
Cheers and thanks,
LisaNovember 3, 2013 at 3:58 am in reply to: just developed cataract & corneal transplant required #4561
Hi Dr Diana,
I visited the Opthamologist and it’s taken me until now to be able to post about the experience. A week before the appointment I’d been put on very heavy anti-seizure medication for migraines by my Neurologist which had affected my brain function and speech and balance, so I’d mentioned this to the Opthamologist’s assistant but still felt able to handle the appointment, I was just a little bit slower than usual. The Assistant then stepped me through a detailed interview about the problem with my left eye and I confirmed I had the beginning of a cataract and required a corneal transplant and that I only had blurred and double vision in that left eye. The assistant took copious notes and gave all of these to the Opthamologist who then asked me to come through. He spent quite some time reviewing all the notes and reciting information about Ehlers-Danlos Syndrome & migraines which I found quite confusing with my medication and I mentioned that I was on heavy anti seizure medication and was experiencing difficulty with brain function. He then asked if it was only my left eye affected by the double and blurred vision and I didn’t answer as I knew the assistant had written down that this was the case. I then got side tracked and answered a different question and the short story was he got very angry with me for not listening to him and I started crying as he would not repeat the question so I could properly answer it and he had to do all the eye tests on me while I continued crying. He then said after 30 minutes of testing that I needed to travel an hour into another city for him to use machines that would measure OCT-M and keratometry. On the up side, I’m glad I made him terribly uncomfortable for the whole appointment as he seems to have a form of aspergers and an inability to gauge social queues (he looks after my Father and me but only recalled knowing me when I was leaving). I hobbled out to reception on my walking stick with my sunglasses on with the receptionist trying to rebook my appointment thinking I’d never go near him again.
I would now like to know the best way of finding another opthamologist. I have a recommendation for an Opthamalgic surgeon or otherwise do I aim for someone in Sydney that does the cross linking as I would bet that I need that, given my EDS Hypermobility diagnosis and my further deteriorating eye sight even since I last posted.
Sorry about any spelling mistakes and many thanks for your help to date.
LisaSeptember 13, 2013 at 1:09 am in reply to: just developed cataract & corneal transplant required #4342
The Optometrist did not mention keratoconus & did not know anything about EDS so I was very glad I’d taken your handout. I will update this post when I get more info from my OpthamologistSeptember 13, 2013 at 1:05 am in reply to: just developed cataract & corneal transplant required #4341
Thank you so much Dr Diana. I feel better prepared for the visit to my Opthamologist & I only have blurred/double vision in the eye with the cataract & corneal transplant requirement. Will read your book over the weekend & glad to hear there are other options other than the graft.