Hi all, I did wrote a post yesterday, early hours, but doesn’t seem to have appeared. My short term memory is a disgrace so I’ll try to remember everything I wrote.
so I’m convinced I have MS. I’m having a MRI soon, just waiting for app. Doc has agreed after seeing long list of problems. I also have joint hypermobility syndrome. I’ve been having mobility problems since being preg 8 years ago and doc now things it was down to my hypermobility. Had another pregnancy since then and again had mobility problems. Both pregnancies left me on crutches. Youngest was induced because of the pain.
Looking back I’m pretty sure I’ve had problems inbetween those pregnancies aswell. Since having my youngest nearly 2 years ago, my mobility got better for a while but in the last year has got worse, with the last few months being awful. Can’t walk further than 15 mins without the pain getting so bad I can’t walk anymore. Am using crutches almost daily.
as well as this I also have a long list of other problems, from slight numbness to bad pins and needles. Memory awful, foggy brain. Loss of balance, floor feels like jelly,reeeeaalllyyy bad back ache, keep dropping things (yesterday my phone! :()
im sure there’s more but can’t think of them right now.
so anyway, I have 2 questions. First is, could it be that I’ve had remitting MS for years and now it’s turned to PPMS? I’m finding there’s hardly a days rest from the pain now and even if there is, it’s still there, lingering. All the other symptoms are there all the time.
secondly, if my mobility has got that bad in the last few months that I’ve now had to buy a wheelchair…is there a good chance it will get worse and I’ll end up permanently using it?
thanks to any replies. I’m at my wits end with it all and feel so lost and confused!
First of all you dont get PPMS following RRMS. You get SPMS following RRMS. If you are having periods when your mobility improves then if it is MS then it is more likely to be RRMS. I have heard that MS often improves during pregnancy but then people have relapses after the pregnancy.
Try not to worry your problems could be attributed to other more resolvable probems. Waiting for tests etc can be a very stressful time which can in turn lead to an increase in stress and odd symptoms.
Thanks for your reply. Sorry I confused the different types. I’m finding everything hard to take in.
i don’t have different levels of mobility, it’s more a case of the pain is sometimes worse than other times. Either way, my mobility leaves have decreased and and doesn’t seem to be getting better. Does that make sense? My brain fog and concentrate is really quite bad at mo and I’m struggling to explain to people how I’m feeling and what’s going on
I don’t think I clicked on post! I’m seriously not with it at the mo!
anyways, my reply to you was to apologise for getting the types of ms wrong…am finding it hard to keep information in and am getting muddled easily.
Also, my problems with mobility are getting better. They have stayed the same, if just the pain can be ‘okish’ one day and awful the next. I know if I go walking for more than 15 mins, the pain will increased dramatically. My walk has become an old ladies shuffle (I’m 31) with a slight limp and my feet don’t lift well.
My backache is there constantly but again the levels of pain change. I can’t remember the last time I was pain free. The best K get is a day where I can cope
Welcome to the forum, you will find lots of support and advice here, we all understand.
If you are waiting to see a neuro you are definitely on the right road, but DX MS is really difficult, so patience is needed, lots of things need to be ruled out, as there are lots that mmimic MS, with lots of things easily remedied. Hang in there, and while waiting for your appointment, make a list of symptoms and questions to take with, and if possible, take a family member or friend as well, it’s easy to forget everything.
In the meantime your GP can prescribe medication to help with your symptoms, may be worth having a word.
If it does turn out to be MS, it is not the end of the world, you will adapt, and become easier, but rrms does not turn into ppms, it can turn into spms, hope this helps.
Hi Mrs Kel, are you sure you dont have EDS hypermobility?
Hypermobility Type
Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees) and small (fingers, toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella and temporomandibular joint dislocate frequently. The skin involvement (smooth velvety skin with or without hyperextensibility) as well as bruising tendencies in the Hypermobility Type are present but quite variable in severity.
Chronic pain is a well-established and cardinal manifestation of Hypermobility EDS and it is common for pain to be out of proportion to physical and radiological findings. The origin of the pain is not clearly understood, but some of the likely causes include muscle spasm (tender points are sometimes present) and degenerative arthritis; neuropathic pain is also common.
To date, there is no distinctive biochemical collagen finding identified for the majority of Hypermobility cases. The Hypermobility Type of EDS is inherited in an autosomal dominant manner.
If you have neuropathic pain, normal pain killers wont work. I would talk to your GP again and ask if you can be put on a drug specificially designed to help neuropathic pain, which is horrendous.
Hi Mrs Kel. I really feel for you on the pain side and all I can say is that I agree with what’s been advised, see your gp and possibly even request a referral to the pain clinic. Neuropathic pain really is awful but there are drugs available to help. You shouldn’t have to wait for a diagnosis to get the pain under control. There is nothing to be gained by continuing as you are. It took me a long time to get my pain under control but my gp managed it before I was diagnosed, sometimes you have to feel like a nuisance keeping going back but I’m certain there’s a combination to suit you.
As the others have said, sometimes the road to a dx is very long but it doesn’t have to be as unpleasant as what you’re currently experiencing. I too hope you don’t have MS, but if you do it definitely isn’t as bad as some of the things you read or hear, most of us have a decent quality of life, it’s just not what we’d initially expected our lives to be.
Crazy chick: I’m almost 100% sure I don’t have EDS hypermobility as I don’t have any of the symptoms. I wonder if I’ve been misdiagnosed with hypermobility simply because I can click my bones so it was easy to label me with it. I only scored 4/9 on the hypermobility scale.
cath: I do have an appointment with pain clinic in about two weeks I believe. I’ve told the doctor I can deal with what’s happening to me, the pain, the lack of mobility and everything else, I just need a reason why
Hello and welcome to the board, diagnosis is hard and having a label to put on it won’t change anything but it will enable the GP etc to know what they are treating. I hope you can get a answer soon.
Thanks Sonia. I’ve not been in too much pain since Thursday night. Just heavy actin legs and the pins and needles so hopefully its (what ever ‘it’ is) is calming down now
Hi Mrs. K, I’m also in the midst of the process of diagnosis (I’m in th US, and it’s agonizingly slow). You have my sympathy. I’d just like to mention a Beighton Scale score of 4/9 is considered a “strong” criterion for EDS. Also, many people with EDS have dysautonomia…including sensory neuropathy. Of course, people with MS also often have autonomic issues…so it’s confusing. Yet the fact you’ve been told you are hypermobile may explain a lot. I encourage you to follow up with Ehlers Danlers Syndrome —do you have a good doc? This may lead you to appropriate treatment for your pain (for you might have inflammatory as well as neuropathic pain, and treatment is different for each…as folks here pointed out). There are also some great EDS sites on the web. Best of luck…
Thanks lily. I don’t show any of the signs of hypermobility other than the 4/9. And those are the easiest most common ones (thumb to arm ect) I also don’t have any signs of EDS. I did look it up. I believe I was only diagnosed it because all my bones click and I had problems with my hips during pregnancy. I have a rheumatologist appointment in a few days
Hi again, Well, it’s just a thought. Because EDS is a genetic and not an autoimmune disorder, there’s no treatment for it anyway. I’m thinking of cancelling my diagnostic appointment for it, for this reason. Of course I hope you have some answers soon…
So sorry I didn’t reply before, I didn’t get an email and only noticed because I was having a nose of this forum! I will mention it at my next docs app (which is today!)
Diagnosis of PPMS to difficulty walking (wheelchair) = about 10 years, so wait for MRI and then a lumber puncture and hope it doesn’t show MS, since it is a disease I wouldn’t wish on anyone.
