Patients Multiple sclerosis
Topic of the discussion
Posted on 17/09/2014 13:52
I have RA which I have had for 11 years and Fibromyalgia which I have had for 8 years but I have recently been experiencing a different type of pain in my legs.
Sometimes my foot will go dead and I have to have it rubbed to get the feeling back, this has happened about 7 times in 4 weeks.
I have had to but a bed cradle to keep the duvet off my legs as it was so pain full. I have been to the doctors and he says my nerve endings are ultra sensitive as even a gentle touch was very painful.
It is also effecting how I walk, I cannot walk much because of the above mentioned conditions but my gait is even worse.
My GP has upped one of my pain medications and I have got to go for blood tests and go back to see him in two weeks.
I looked on the internet (which I know you shouldn't really)to see what could make nerve endings sensitive and MS was one of the things that kept coming up.
So I just wondered how other people started with MS and if any one has experienced anything like this.
Thanks for reading this.
Beginning of the discussion - 22/09/2014What are the first signs of Multiple Sclerosis https://www.carenity.co.uk/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/what-are-the-first-signs-of-multiple-sclerosis-101
Posted on 22/09/2014 14:22
Hi Kazog61. I was diagnosed with MS in 2008, and I have learnt that MS is different for everyone. So it is hard to say what are common symptoms for "newcomers". Personally I experienced numbness in my right arm. I lost both strength and coordination, so I couldn't write, brush my teeth, hold a knife. After a while it moved to my right leg, which became a little heavy and I had to really focus to lift my foot properly when walking. Then it hit my balance (one night I fell off the couch when reaching for the remote!) and my speech became at little slurry. This all happened over the course of two weeks. I was sent to the hospital and within days I was diagnosed.
Recently I have been experiencing this numbness and tingling in my hands, which is sort of what you are describing with your feet. But I do not experience any pain from this. Sometimes though I can get a burning sensation on little areas of my arms.
I can't say whether your symptoms are specifically MS related. since there are so many different symptoms I tend to just focus on the symptoms I am experiencing here and now :) As you said, it's dangerous to read too much online, all of a sudden you have symptoms from reading too much ;)
I quickly looked up RA and it seems that nerve pain is a not so uncommon complication of RA.. check this link to Arthritis research UK http://www.arthritisresearchuk.org/arthritis-information/drugs/painkillers/medications-for-nerve-pain.aspx
Hopefully it is "just" the RA, I sincerely hope you do not also have MS!
Best wishes to you
Posted on 27/03/2015 00:43
Hello I have all the symptoms for ms but my consultant wouldn't diagnose me for 3 yrs so now seeing a specialist in Oxford and should be getting a ms diagnoses in may how did everyone take the diagnoses
Posted on 18/04/2015 14:54
Hi Minismurf, welcome to Carenity! I don't really think it's great news for anyone to actually (formally) find out that they have MS......even myself being a (ecstatically, happily retired) Nurse was more than a little surprised. Although I had experienced very extended episodes of chronic, unremitting fatigue, pins and needles, areas of decreased sensation, reduced cognitive ability, memory problems and a host of other symptoms for about 8 years - attributed these to working too hard, having too many fingers in too many pots, having osteoarthritis since my early 20's, part of my hypothyroidism, thought it might be a brain tumour, the beginning of dementia/Alzheimers etc. Even when I developed double vision (in my left eye), on the first day of a 2 week holiday in Florida and a few days before returning to the UK, developed increased limb weakness and pins and needles/numbness, believed this was either confirmation of a brain tumour or CVA (stroke) but chose to remain in denial and carry on regardless. It was only when I had no choice but to go to our local A+E Dept, due to having a hypertensive crisis, and had a CT scan which showed I didn't have a vascular problem (ruling out brain tumour/CVA), that I knew it was MS (the Medics persistently said it was a brain stem stroke but a visiting Neurologist said no, it's more likely MS). About 4-5 months later, another Neurologist diagnosed me as having "Benign" MS (I probably would not need any treatment nor should it continue to adversely affect me although he did refer me to a MS Specialist Nurse, although he didn't think I would actually need her). I always strongly questioned his diagnosis because although my symptoms constantly changed, often on an hourly basis, they never went away. Saw my MS Nurse (see her every 6 months), last week, and decided to finally "take the bull by the horns". I said to her, considering I have never had any day without symptoms for over 2 years now and this whole thing probably started/was misdiagnosed in about 1977 as trigeminal neuralgia, believe I now have SPMS (Secondary Progressive MS) and she agreed. I so empathise with anyone experiencing persisting "problems" that the medical profession doesn't accurately recognise/treat/investigate but believe anyone with these needs to continue to pursue this until an answer(s) is/are found. Personally, I felt "relieved" that I actually had a "medical" condition rather than something that was psychosomatic because I certainly thought this must just all "be in my head". I also personally feel there are so many worse conditions than MS and because so, so many others have MS, it's rather reassuring none of us are on our own. Another thing is, everyone's MS can so, so often be entirely unique - no one's MS is exactly the same as anyone elses'. The key, I think, is to get to know as much as we can about whatever condition we have because, whether we like it or not, unless this is just an isolated incident, we all will have to learn to live with it and manage it as positively as we can. Having my MS has and I suppose continues to be, quite a "journey" with some really steep learning curves but it isn't the end of the world or hopefully doesn't have to be. There is a lot of support out there, although it sometimes needs a bit of finding. I hope you will find Carenity an invaluable source of help and support and please feel free to "use" me if you ever need to talk, either publicly (like now) or privately (by sending a friend request). Am keeping my fingers crossed for you that you will soon receive the news/information that you need. Please hang in there Minismurf and always here if you need. Ann x
Posted on 26/09/2015 17:26
I have been dx with Ms for 12 years and had symptoms for 20+ , pp ms and my first symptom was foot drop in my left foot . It's the only real symptom I have had , now following the path of Ms I walk limited amounts with crutches and use a wheelchair anything over 15 metres .
have learnt a lot over the years
Posted on 13/01/2018 19:42
Hi I am new to this site I was diagnosed with moderate to severe osteoarthritis in my right hip about 6 months ago. previous to this in 1998 I was diagnosed with ataxia caused by coeliac disease. I am now suffering with severe pain in my left leg at the bottom pins and needles of both feet electric shock feelings in the top of my right arm and a couple of weeks ago I felt as though someone had tied an elastic band around my right arm at the top. I cannot walk very well at all falling quite a lot my physio did a neuro examination with the stick at the bottom of my feet and she said this was ok but feels it is neurological. My gp has referred me to a neurologist. Does anyone have idea what the problem is many thanks julia x
Posted on 27/01/2018 22:51
Hi I have just joined this site, I am currently under investigation for ms, my symptoms started 7 months ago and I have had symptoms everyday since then, it all started with a uti that progressed onto numbness and burning sensations throughout my body and I have not had a day go by where I haven’t had numbness tingling vibration blurred vision weakness the list goes on and on, had an mri which showed lesions and recently this past week had a lumbar puncture and a whole host of blood tests and X-rays I still can’t get my head round that all this started with a uti
Posted on 03/10/2018 18:27
How are your symptoms and treatments going now?
Posted on 09/12/2019 16:56
Nerve pain is definitely one of mine