I never thought of writing on a forum for help for a condition I havent been diagnosed with but I can’t get answers anywhere else.
I suffer with a condition called Hypermobility Syndrome which causes chronic pain everyday due to loose and hypermobile joints. I recieve physio to help be build up muscle tone to keep my joints steady but recently i’ve been experiencing a lot more servere symptoms I don’t think are generally linked with Hypermobility Syndrome.
My main problems are nerve like shooting pains through my hands arms legs and fingers. I’ve got constant tingling and muscle weakness, not complete loss of control but as if I cant grip things properly. I’ve also been having problems with my vision recently, double vision, blurred visiona nd extreme pain in one of my eyes. I went to the optician who has refered me to an eye specialist as she said the muscles in my eyes were working properly. I also get really bad migraines and pain at the back base of my head, the latest one put me in hospital just this weekend, I lost sensation in my legs and face and my speech was slurred. I’m still in agaony from the shooting like pain in my arms and legs but i’m presuming that its from the migraine still?
My rhuematolgist sent me for an MRi of the spine to see if it was some sort of prolapsed disk that was causing these pains but they have came back fine and he’s now sending me for a Brain MRI which I will get on Friday. He’s also referring me for an autonomic dysfunction which he thinks may be affecting my heart rate and causing postural hypertension. (not sure if autonomic dysfuctions are linked with MS or not?)
He said they just need to rule out anything else and never mentioned MS but the more I look at the symptoms and people stories and starting to think it could be. I also found out online that it could be something called a chairi malfunction that could be causing these symptoms, again not sure if these lesions are linked to MS?
Forgot to add i get dizzy spells to, probabaly from the postural hypertension and also i’m pretty clumsy and forgetfull. I sometimes have trouble getting my words out, i know what I want to say but they just dont come out right or fluently, like I’ve had a bottle of wine
I think there are plenty of us here still looking for answers. I’m new to all this too, but its good to know we aren’t alone. We have simular symptoms and all of those you have I can relate too. I think if we weren’t concerned we wouldn’t be here.
I see you have another condition too but one of my questions is how long have you noticed the symptoms??
My gp asked me about ballance and I had a think and looked back and noticed that it was maybe gradual over three years or so. I also think my eyes have been flickering for maybe three weeks and had a pain behind, but they have had yellowy splodges for a while especially in dark or very light situations longer than i can think of a time when it started… pins and needles I have noticed for three months or so but may have ignored them for longer. its also hard not to look at personality traits ie my clumsyness and forgetfulness and think are they worse than they were?? you start thinking everything maybe related. which it might…but then again might not be at all.
it all seems so up in the air! i’m medically trained and i’m always searching for the answer or cause of problems faced by my patients, but the time it takes for all the tests to be aranged and reviewed and then for the two episodes…seems to be never ending, although I know that they dont want to get it wrong. Even the time for the initial neuro referal to come through is crazy, my apointment came after a week from seeing the gp the apointment was for December. I’ve been back and it is being rushed through now, as my symptoms are worsening.
hopefully we will get some answers soon, sorry i’m not much help but thought its good to know there are others out there going through it
Wow, thanks for taking the time to reply with so much information, I really appreciate it!
I’ve had so many bloods taken over the last few years to rule out conditions but I couldn’t for one tell you which ones I have been tested for but everytime they always come back with no abnoemalities except from i’m aneamic.
I will have a look at the conditions you have mentioned.
I seen a neuro about 5 year ago for simalr symptoms that in the past few years seemed to settle down so I’ve just got on with it and never chased Drs for answer. Its just now I can’t get through one day without feeling terrible and symptoms so I want answers, esp as I have a little boy to look after too.
I know when i’m having a flare up of the Hypermobility as my muscle ache and burn as if I’ve ran a marathon, I get this from just walking up a flight of stairs but the tingling/stabbing/nerve like pain is completely different. My condition means I have faulty collagen so my muscles have trouble repairing themselves so a lot of other conditions are secondary which may also be the answer.
Can’t help worrying though, hope I get an answer soon.
I seen a neuro about 5 year ago for simalr symptoms that in the past few years seemed to settle down so I’ve just got on with it and never chased Drs for answer. Its just now I can’t get through one day without feeling terrible and symptoms so I want answers, esp as I have a little boy to look after too.
I know when i’m having a flare up of the Hypermobility as my muscle ache and burn as if I’ve ran a marathon, I get this from just walking up a flight of stairs but the tingling/stabbing/nerve like pain is completely different. My condition means I have faulty collagen so my muscles have trouble repairing themselves so a lot of other conditions are secondary which may also be the answer.
Can’t help worrying though, hope I get an answer soon.
Like you, I am hypermobile and get migraines (thankfully rarely anything as bad as you clearly get!); I also have MS and get some autonomic symptoms too although that bit is not officially diagnosed. The combination of conditions can be quite confusing, e.g. my hypermobile knees add to my MS-induced mobility problems and my migraine pain and neuro symptoms are easily confused with some of my MS symptoms, etc.
So I guess working out what’s going on in your case may not be straightforward and all you can do is follow the path you’re already on. It certainly sounds like your rheumy is doing all the right things so, if anything turns up on your MRI, a referral to neurology is the likely next step.
Hopefully it won’t take too long to get some answers, but try and be patient! I’d also advise against googling everything - neurology is a bit of a minefield because there are only a limited number of possible symptoms but they can be caused by literally hundreds of conditions. The upshot of this is that your symptoms will “fit” with all sorts of things - but you may have none of them!
It does seem that all symptoms tend to overlaps conditions so I can see why I would be so hard for my Drs to give me a diagnosis without lumbering me with a load of different conditions.
I just didn’t want to think I was going mad and imaging that MS is an actual possibilty. I havent really mentioned it to my family that i’m worried it could be but have just said i’m getting the brain scan to rule other conditions out.
I try not to google conditions related to the symptoms but it’s so hard! I read a lot of blogs which has helped me realise my symptoms are pretty similar in line with others who have the condition.
I don’t have another appointment booked in until the start of November after my scan so I’m expecting to wait until then for answers. I supose if something does show up than I may hear sooner.
I just want an answer so when people ask whats wrong with me I can tell them instead of listing off a number of problems. Just feel like I need to be put down lol.
