# MS? **URL:** \ **Category:** New diagnosis and before diagnosis\ **Created:** [17 January 2019 09:49 UTC](https://forum.mssociety.org.uk/t/ms/14087 "2019-01-17T09:49:46Z")\ **Posts on this page:** 11\ **Page:** 1
**Author:** ![MTB](https://avatars.discourse-cdn.com/v4/letter/m/4bbf92/32.png) [@MTB](https://forum.mssociety.org.uk/u/MTB)\ **Post date:** [17 January 2019 09:49 UTC](https://forum.mssociety.org.uk/t/ms/14087/1 "2019-01-17T09:49:46Z")
Hello, this is my first post on this forum (on any forum actually) I don’t want to waste anyone’s time but would appreciate a view from someone else. Several years ago I was told I had Fibromyalgia. I had presented with multiple joint pain, general tiredness and a host of other symptoms over time. I was given a leaflet and having read it thought “yes, this is what I have”. Over time symptoms have come and gone, sometimes worse than others. After a particularly troublesome time with my shoulder joints (couldn’t raise my arms with weakness/pain) an x-ray showed osteo-arthritis around my collar bone. Over the last few months I’ve had a couple of falls/trips. My husband says one minute I was there, next I was on the floor. I don’t recall tripping over something - I just seemed to fall. The pain and weakness in my upper legs has got worse. The tiredness has got worse - I liken it to someone having pulled out my power chord. The onset feels immediate. I went to the docs (have recently changed surgery) and said how can I feel this bad and it be nothing serious. He asked a few questions - any problems with my eyesight? My eyesight seems to be deteriorating but sometimes is worse than others …he asked had I had any loss of vision - I replied no, well except for that time a few years back where I lost sight in one eye for several hours. At the time neither GP or optician seemed to worried as sight has returned - and this problem has not recurred since. We talked about the muscle pain - how after walking a short distance (mile or two at most) I have to lift my legs into the car as they don’t have the strength to do it themselves (that’s a hard one to describe - does it make sense to anyone?). I have the usual tingling and numbness in my hands which I have always put down to sleeping funny. I have patches on my back and legs with no feeling at all (i can’t feel hot water on my lower legs/feet so have to be careful with bath water temperature) - the numbness on my back I have had for years, the legs are a more recent thing. If I get warm (hot shower or standing in sunlight) I feel horribly itchy. Its a whole bunch of werid stuff. So, GP sent me for an MRI can of my head only - not my spine and now I wait the results which I get from him at an appointment in 7 days time. I am 53. So, I guess the views I would appreciate are? Is it possible I have MS? Is it possible I have had it for some time and my symptoms have been dismissed as something else? Was it right to be referred for a brain scan only and not spine? Are my questions stupid? This has been a long first post - I am sorry. I haven’t spoken about this with anyone other than my husband and would appreciate mulling it over with someone else. Thank you. ---
**Author:** ![catwomanCarole58](https://avatars.discourse-cdn.com/v4/letter/c/e95f7d/32.png) [@catwomanCarole58](https://forum.mssociety.org.uk/u/catwomanCarole58)\ **Post date:** [17 January 2019 10:04 UTC](https://forum.mssociety.org.uk/t/ms/14087/2 "2019-01-17T10:04:33Z")
don’t think anyone thinks you are stupid. you’re hurting and worried. i really am not able to say whether it is ms. only a neuro can do that. mri of the brain is usually enough to diagnose. so when you see the neuro for the results you will have an opportunity about a spinal one. i’m assuming that you have a neuro. if not ask the GP to refer you. ---
**Author:** ![MTB](https://avatars.discourse-cdn.com/v4/letter/m/4bbf92/32.png) [@MTB](https://forum.mssociety.org.uk/u/MTB)\ **Post date:** [17 January 2019 10:24 UTC](https://forum.mssociety.org.uk/t/ms/14087/3 "2019-01-17T10:24:09Z")
Thank you for your post - I haven’t been referred to a neuro - the results are being sent to my GP - guess we’ll take it from there depending on the outcome. I know the symptoms are many and vague - I keep recalling many things over the last 10 years or so that have been dismissed individually as nothing to worry about. Now when I think of them all together I guess I’m worrying a bit. Still, I’ll have a better idea in a weeks time. Thanks again. ---
**Author:** ![Ssssue](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/ssssue/32/4182_2.png) [@Ssssue](https://forum.mssociety.org.uk/u/Ssssue)\ **Post date:** [17 January 2019 14:39 UTC](https://forum.mssociety.org.uk/t/ms/14087/4 "2019-01-17T14:39:13Z")
Hello Carole is right that your questions aren’t stupid. When you have health concerns, all and everything is a valid question. I would pick up on one thing you’ve said, you were diagnosed with Fibromyalgia, but have asked your new doctor whether it could be ‘something serious’. Fibromyalgia is a debilitating serious condition, so you might find that a lot of your symptoms actually could be connected to that. You also have osteoarthritis. Have you seen (or been referred to) a rheumatologist? That might help. Often people are only given an MRI of the brain. A clear MRI isn’t always a definitive answer to the question about MS, as you could still have demyelinating lesions in your spine. It’s just less likely. Even if you have a clear brain MRI, you could still ask to be referred to a neurologist if you, and your GP, think there might be a neurological problem. Just don’t necessarily expect a diagnosis of MS. It does share a lot of symptoms with other diagnoses. Best of luck. Sue ---
**Author:** ![MTB](https://avatars.discourse-cdn.com/v4/letter/m/4bbf92/32.png) [@MTB](https://forum.mssociety.org.uk/u/MTB)\ **Post date:** [17 January 2019 16:30 UTC](https://forum.mssociety.org.uk/t/ms/14087/5 "2019-01-17T16:30:42Z")
Thank you Ssssue, appreciate your reply. When I said to my GP that I can’t possibly feel this bad without it being something serious he asked me what my biggest fear was. I told him I’m not frightened of having anything but I am frightened of having something and not knowing I have it. Does that make sense? I have seen a few comments on here that suggest a diagnosis is better than no diagnosis - probably easy to think that until you actually get a diagnosis and then its a completely different ball game - I’m not sure? I’m a bit of a control freak so having to wait and things being outside of my control is difficult for me. Roll on next week - hopefully the picture will be clearer for me then. thanks again ---
**Author:** ![Kayrb](https://avatars.discourse-cdn.com/v4/letter/k/858c86/32.png) [@Kayrb](https://forum.mssociety.org.uk/u/Kayrb)\ **Post date:** [18 January 2019 21:51 UTC](https://forum.mssociety.org.uk/t/ms/14087/6 "2019-01-18T21:51:58Z")
I am in the same boat, I have had an MRI with white matter changes the neurologist wants me to have a blood test and spinal tap, which is on Thursday then another MRI don’t know when that is, so I am just waiting. I think not knowing is worse because you can think really bad things that you think you my have but the neurologist wrote that I do have demyelinating disease like legions whatever that is but it is very scary and our imagination is worse than what we actually may have, I had an pet scan one time and the doctor never wrote back at all. Kay ---
**Author:** ![scared111](https://avatars.discourse-cdn.com/v4/letter/s/3da27b/32.png) [@scared111](https://forum.mssociety.org.uk/u/scared111)\ **Post date:** [18 January 2019 22:26 UTC](https://forum.mssociety.org.uk/t/ms/14087/7 "2019-01-18T22:26:36Z")
Hi MTB, Im new to this forum too and in a similar situation to you at the moment and its all very scary so I totally understand how you are feeling. 2 weeks ago I didnt really have a care in the world, then I got the results of an MRI of my cervical spine and I feel like my world is crashing down around me. I suppose Ive been lucky as my doctor refered me quickly as Id had numbness in my arm and she suspected it was a trapped nerve, its not, its a demyelinating lesion on my spinal column. Ive complained of weakness in my legs for years but put it down to a very active lifestyle or hypermobility as Ive got that. Ive seen a Neurosurgeon who said I need further tests although didnt seem overly worried and Im now waiting to see a Neurologist and further MRI’s were mentioned. I asked could I have MS, he said it wasnt his remit but said possibly and possibly not, so its just a waiting game now. In the mean time Ive constantly had tingly legs, felt lightheaded, weak legs etc etc and I dont know if my anxiety has gone into overdrive although mentally I actually feel calm. Dr Google definately hasnt helped!! I really hope you get some answers soon and everything is ok. I think the waiting is the worse and I have said to my husband if this is MS then theres not an awful lot I can do to change it. Having read some of the posts on here, it a lovely supportive community and Im sure you will get lots of help and advice. Good Luck ---
**Author:** ![MTB](https://avatars.discourse-cdn.com/v4/letter/m/4bbf92/32.png) [@MTB](https://forum.mssociety.org.uk/u/MTB)\ **Post date:** [21 January 2019 08:47 UTC](https://forum.mssociety.org.uk/t/ms/14087/8 "2019-01-21T08:47:38Z")
Thank you all for your replies. This is a very supportive community where you can ‘voice’ what’s going on in your head without fear of worrying or upsetting those closest to you. I don’t want to have 100 ‘what if’ conversations with my husband. Roll on Friday and my MRI results. Thanks again M ---
**Author:** ![Mrsbee123](https://avatars.discourse-cdn.com/v4/letter/m/c77e96/32.png) [@Mrsbee123](https://forum.mssociety.org.uk/u/Mrsbee123)\ **Post date:** [23 January 2019 19:01 UTC](https://forum.mssociety.org.uk/t/ms/14087/9 "2019-01-23T19:01:50Z")
My first symptom was foot drop which bean over 2 years ago. After many appointments to sort out 'a trapped nerve ‘in my back, I had a spinal MRI because spinal stenosis was suspected. After the MRI was clear, I started to Google.I was put on HRT for constant and debillitating fatigue, It didnt help at all.The brain fog was like living ina cloud and I was stuck on the sofa day in day out. I was a gym bod, a cyclist and a walker. To sofa in one fell swoop. I was refrred to a neurologist, who says ‘I more likely than not have SPMS.’ So Im waiting for a brain and neck MRI. When i was told itwas not stenosis I went into a decline. BUT with support from a fabulous husband and online communities, I dont feel as though my life is over. My son had Aspergers aand when he had his diagnosis he said he was ’ no longer weird, it has a name for the way I feel’ I feel like that too. My diagnosis is not definite, but I am taking it as if it is. I need to move forward and do things with or without a walker, cane, wheelchair, sit ona stool to shower etc. Life is too short not to embrace it in any way I can. I need to plan more carefully to do things, i need an automatic car etc but there are many people worse off than I am. ---
**Author:** ![Sugar\_plump](https://avatars.discourse-cdn.com/v4/letter/s/ecb155/32.png) [@Sugar\_plump](https://forum.mssociety.org.uk/u/Sugar_plump)\ **Post date:** [23 January 2019 21:30 UTC](https://forum.mssociety.org.uk/t/ms/14087/10 "2019-01-23T21:30:40Z")
Hi mrsbee. Your story is so similar to mine except my foot drop was but down to a trapped nerve for about six years and the menopause used to explain other symptoms. I was diagnosed with ppms last November, nine years or so from my first symptoms. I too drive an automatic and use a stick but I also ride pillion on a large motorbike and go camping. I’m 54 next week and although life has changed and I have limitations its still a good life. Karen. ---
**Author:** ![Kaly108](https://avatars.discourse-cdn.com/v4/letter/k/ecd19e/32.png) [@Kaly108](https://forum.mssociety.org.uk/u/Kaly108)\ **Post date:** [24 May 2022 17:11 UTC](https://forum.mssociety.org.uk/t/ms/14087/11 "2022-05-24T17:11:09Z")
Love ❤ this.