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.
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.
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.
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.
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.
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
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.
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
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.
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.
this.