Hi folks, I was wondering if you could tell me when and how you began suspecting there was something not quite right and at what point you went to the doctor. Also, how long a process roughly does it seem to be before you get answers or diagnosis? I realise that’s like asking how long is a piece of string. I’m just trying to gauge how similar or different everyone’s experiences are. Over the past 6-12 months I’ve begun noticing things that concern me slightly but have yet to speak to a doctor. I’m a 35 year old mum of four young children, who, up until now has had no major health concerns. I have a mother in law with MS (diagnosed about 16 years ago) and have seen how it has grown worse for her in recent years, so having possible symptoms myself now is a cause of anxiety. I am trying not to panic about it as I know it could be nothing and explained away as something else entirely, but as I am completely in the dark right now, I’m finding myself imagining the worst. Beginning 2-3 years ago I began getting terrible pins and needles and an icy cold sensation in my hands and arms. They can go so cold, like they are dead lumps of flesh. I assumed this was a form of carpal tunnel syndrome and a side effect of pregnancy, but I’m not sure now. I have also had for a number of years, peculiar out of body sensations when I sit still for long periods. I feel light headed like I’m floating out out of my chair and hovering a foot above my own body. Really odd feeling. Earlier this year I noticed that when I went for a wee I couldn’t fully empty my bladder and would go back to the loo minutes after just going. I have to rock back and forth and squeeze my muscles hard to try to void my bladder properly. More recently (ie, beginning in the last two months) I have randomly started getting excruciating foot spasms. My toes suddenly stiffen and arch down toward my sole, sending horrid pains up my foot and leg to the back of my knee. It’s kind of like the calf cramp you sometimes get in pregnancy, but way more painful. It’s happened several times in my left foot and once in my right. I have also had a vague sensation that it is going to happen and managed to prevent it by flexing my foot and massaging it until the feeling subsides. Finally, for the past week or so, my mouth has felt strange. Sort of like I’ve used a mouthwash to numb it. My lips, tongue, inside cheeks and throat feel cold and a bit tingly. It all seems a bit random and vague doesn’t it? I am going to try to document any little odd symptom a I might get so I can build up a picture. Whether some, none or all of these things are pointing to MS I have no idea, but I needed somewhere to get all this out, where people would be able to empathise. Cheers for reading.
Sorry to hear about all your symptoms - best thing to do is go to your Dr and explain the symptoms , when they started and how long they lasted.
My Dr said she usually waits for three different symptoms in 6 months then refer to neurologist or for MRI/lumber puncture.
They could all be individual symptoms but as you’re on this website maybe you think it’s MS.
Go to your dr and get some tests done.
In the meantime - take it easy.
I think my problems started about 4 years ago with ‘odd’ uncomfortable tingling / creepy-crawly sensation in lower back - I googled symptoms and thought it sounded like restless legs, and it since it was pretty manageable I didnt see any point in going to doctors at that point.
2 years later I woke up one morning with hands fixed in claw shape - went to doc who said it was probably either an inflamatory response to a new antidepressant I’d been taking, or perhaps the start of an iflamatory arthritis. Was told to wait & see if it got better on its own, which it did.
But a few months later I ended up being admitted as an inpatient to A&E with severe eye pain, unable to walk unaided for a short period of time. A&E docs didnt have me assessed by opthamologist, but did put me on a drip, then discharged me next day, and said it was probably a bad virus.
About a month after that I started with bad pain and tingling in right foot and hand, chest pain and fatigue. My GP did lots of blood tests and ruled out diabetes, anaemia , infection etc, and then referred me to rheumatologist to assess for rhematoid arthritis. I then met lovely rheumatologist who said it was definitely not lupus, or any form of arthritis, and in his opinion probably not fibromyalgia either - he wrote back to GP suggesting I be referred to neurologist to ‘rule out’ MS.
Four months later had neurology ap, with a very patronising professor who told me he would do MRI to put my mind at rest, but wrote letter to GP saying he thought it was a mental health issue, so he was discharging me from neurology.
I felt really silly about it all, and was fed up with having tests, so I put off MRI. When I finally had it done, it showed some demyleination, so prof recalled me and told me it was definitely ‘ms-like’, and referred me to MS specialist.
3 months later saw MS specialist, who diagnosed CIS but wanted further scans as first neuro had not scanned spine. have been told there is possibility that if lesions show on the spinal mri, diagnosis may be changed to rrms - have been offered lumbar puncture but have decided to wait to see results of mri before going down that route. However, even though my dx is CIS, I have contact with MS nurses, and take baclofen for spacticity.
Looking back, it all seems very long drawn out - over 4 years. BUT… I did not go to docs straight away (waited 2 years from first ‘mild tingling’ sensations, and also put off going for MRI for a few months). So, taking out those factors, I’d say it has taken about 2 years between first hospital visit and current situation, the most time-consuming factor being the length of waiting lists. Also, I guess it was held up because neither me nor my doctors really considered MS at first, whereas if you suspect that is what might be going on, you could raise that with your doctor at a much earlier point, which might speed the assessment process along. My advice would be to go to docs and ask for advice sooner rather than later - it may very well not be MS after all, but the whole rigmarole of tests, waiting lists etc takes so long anyway that you dont want to make it longer than it need be. xxx
Thanks for those replies, both of you. I feel silly worrying about it, as the symptoms are indivually not much at all, but as a whole picture it bothers me. As you say though, the only way I will know one way or another is to see my GP. If I didn’t have a family member with the condition I probably wouldn’t have made the links in my mind and caused myself this anxiety.