Good morning all,
I am new to this site, I have been diagnosed with MS for 3 years and on the whole I have manged the minor relapses well, I hold down a full time job am a Mum to 2 Kids (well they are now in their early 20's) and have a fantastic husband. Last month I had several areas that seemed to be attacked at the same time, to the point I was taken into hospital as they thought I was having a stroke (fortunately not!). At 50 (well nearly) I am having to walk with a zimmer frame and looking like I have drunk a liter of Vodka on an empty stomach.
My consultant is now recommending that I have a Disease Modifying Drug, I really cant remember the name of the drug he is suggesting, but I have to say that I am now terrified of this treatment. I know that they have to give you worst case scenario.... but......
I don't have anyone in my circle of friends or family who suffer with MS let alone gone through this treatment.
Can I ask if there is anyone that has gone through it and how it has improved their life with MS.
Thank you in advance for your support.
Hi, I was registered on this site some years ago. I have been experiencing problems for 8 years now but am currently undiagnosed and I don't necessarily think it's MS I have but would value your opinions in whatever area.
I went through the neurologist 5 years ago with not the greatest experience. After and MRI and Nerve Conduction Studies revealed nothing, the consultant, running late just revealed that info and then dismissed me telling me to just take Amytriptline and increase the dose as and when things progressed. I've now been on them since.
I have been very reluctant to go through the investigation procedure again after that outcome as I was left to feel I was making a fuss about nothing but in the last few years the problems have become more difficult to ignore.
I started out with just right sided facial pain but since have developed right sided pain all over my body.
I have various issues with stabbing pain in my eye, arms, hands, legs, feet. Numbness in feet and fingers, distorted vision and weakness on my right side. My writing has become terrible as I don't have the strength to control the pen properly. Even typing this makes my hand and arm feel 'tired'.
The attacks have become more frequent. I kept thinking I was coming down with something, was so tired I could just sleep where erver I was - my desk included! Had pain, weakness etc. It was only because I would say to family when I felt ill that they commented that it was way too frequent and there were no cold or flu symptoms.
There are many other problems including depression, confusing my words, forgetting my words, constipation - nearly always.
So after a 3 week attack I went back to the doctor - thankfully not my usual one who last said ' you'll probably never know what is wrong'!
This one has been amazing, said she would start at the beginning again. She did loads of bloods which only revealed a low iron count which I wasn't willing to take supplements for due to the constipation I already suffer . She then sent me for some more blood tests including ANA's. This returned a positive result!
However, further definitive tests were negative so they said it was likely to be non-specific.
I have now been referred to neurology again for more investigations following this result.
I have just come down with a cold as several of my family have only I can barely stay awake and the pain in my legs and ankles and face make me just want to curl up.
I'm an active 'won't be told not to do things' kind of person so I am hating these restrictions I am starting to face and am scared stiff of having something that is getting progressively worse but also scared I will be dismissed by the neurologist again.
My sister was recently diagnosed with Lupus which may or may not be relevant?
I am really just looking for anything any of you can relate to or anything you know about positive ANA's but negative others test and my symptoms and ... well I think I've bleated on long enough! If any of you are still awake at the end of this I'd really love to hear from you.
I know I probably don't have MS so am intruding a bit but I remember how great you all were before and really need some advice from people in the know and to be honest, I think my family are completely bored with me saying I don't feel well and going on about my pains so I try and keep quiet now and get on ... but that's getting harder
haven't been on here for a while. Hoping for a little reassurance to calm my niggling anxieties. Short story - on Avonex for about 1yr. Things going well until this week, developed pins and needles down left side from head to toes. Pins and needles is not a new symptom, I have experienced it before in the same areas. Thought it might be a UTI so dipsticked my urine and +ve to leukocytes and that's it. Sent it off to get tested and my manager (we're nurses) gave me some antibiotics in case. Result today showed no growth but white cells were present. Has anyone else had this where urine has shown no growth? I can't help but feel a little anxious to have symptoms again as apart from mild pins and needles I've not had any major symptoms since starting avonex. It's to be expected right? I'm worried its a relapse and not just a blip but I suppose just have to wait and see how it plays out.
This is probably a very random question but it's bothering me....
My Lumbar Puncture is on Wednesday, assuming that they have a bed for me. I am worried about it but know from all the tips on here, that I need to lay flat immediately following and for a few days afterwards and I will drink lots of coke and water. I have a few days off work following it so should be able to get all the rest I need to prevent the dreaded headache. Any other tips?
But, what really concerns me is needing a wee while I should be resting. My bladder is quite frankly rubbish and when I need to go, I need to go. There is no way I will be able to have the procedure and then not go to the loo for the two hours after that I am required to lay still, especially if I need to drink plenty. Will it be ok to go to the loo after the procedure before I start laying still or is that more likely to give me a headache?? Did anyone else have this concern or is it just me being silly??
Thank you in advance!!
i just came across something on the mss website. Three young women posting about thier experiences looking after thier mums after many years with ms. Its terrified me to be honest. Ive just been in tears to hubby but he doesnt know what to say to me. These ladies were left unable to do anything at all. It sounds horrific and now all im thinking about is my poor children and what they might have to go through. Is this how im going to end up? Im sorry im in major panic mode right now.
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