Last week i finalliy had my first neuro appointment after a 3 month wait even though it was suppose to be an urgent referall. Saw the neurologist (Dr kasti) and explained that i have had symptoms for many years which i have put up with but now my symptoms are t the point where i can not live my life properly and there scaring me. I have problems with my legs feeling like jelly when trying to walk, hot/cold sensations and pins and needles in my arms and legs, bowel and bladder problems and problems with nuralga on the left side of my face along with sight problems with my left eye, i also get what poeple describe as the hug around my ribs which often wakes me up and of course everyones favorite, Fatigue. After explaining this and asking me to walk on my toes and heels i was told i need a full MRI scan of the central nervous system and was then prescribed pregabalin, when i asked if she thought it was MS she said not to be stupid and all my symptoms were probably down to my lower back as i have had surgery to it several times in years past. I dont believe this for one minute and feel deflated and lost. Every day is a battle for me and i feel like my life has been stolen and i cant do anything to get it back. today i was told the MRI would be at least a 5 week wait and my follow up appointment is in October, urghhhhhhhhhhhhhh, absolutley at my wits end
Sounds like you’ve had a really frustrating time. 5 weeks is a long time to wait, but in the grand scheme of things it’s not really, especially when you’ve been puting up with all these symptoms for ages. Maybe the doc was trying (unsuccessfully) to reassure you that she reckons your symptoms point more to your previous back issues, but she certainly shouldn’t have said you were being stupid! Hopefully you’ll get the MRI results much sooner than October. When I had mine I got a verbal result the next day, so maybe you could ask for a phone call to let you know. Each area seems to do things differently Anyway I hope you get some definitive answers as it’s a lot easier to deal with things when you know what the issues really are.
Marion
There is no way a problem with your lower back could cause problems with your face and eyes! The simple reason being that your brain - the control centre - is at the top! A problem with your lower back couldn’t travel upwards and affect your vision, although back problems can otherwise present very similarly to MS. But the general rule is a back problem or injury only causes problems below it, not above. I do agree with Marion that it was probably a misguided attempt to reassure, although if the term “being stupid” was actually used, rather than how you interpreted it, I do think that’s inappropriate. It would be reasonable to advise you not to jump to conclusions, and that it would be premature to suppose it’s MS, but that doesn’t mean you were “being stupid”. I usually advise people NOT to raise fears of MS unless the GP or neuro does so first, for this very reason. It can get things off on a bad footing, as there are so many other things it might be, and many medics have a horror of self-diagnosers. You are actually MORE likely to be dismissed as neurotic or over-anxious, if you walk in convinced of a serious health condition, than if you demonstrate open-mindedness about what it might be. Anyway, regardless what words were exchanged, the outcome was not at all bad - you’ve got treatment for symptoms - which can sometimes prove a struggle without a formal diagnosis - AND you’ve been referred for a full MRI, which I can’t fault. So just try to put behind you what was said, and concentrate on the fact you did get treatment, and you did get further investigations - so not a wasted visit! Tina
Hi Colins, unfortunately the so called “bedside manner” of the neuro you saw is not unsual. I can offer some experience in terms of the previous back problem and assumptions of that being the cause.
I had 2 lower spine operations and a course of injections into my spine ans spinal nerves inbetween.
It was about 8 months after my 2nd op that I started to fall over fo no apparent reason. My left leg and foot were also numb. But at that point I wasn’t really experiencing many symptoms except for mild pins and needles and buzzing sensations. I myself assumed it was my back agan ( I have dengenerative disc disease). Mt GP referred me back to the Neuro Surgeon to investigate if my back had got worse. It was at this point that my journey into the possible MS/other auto immune disease began, because the neuro Surgeon arranged to get and MRI done, whole of spine and brain. When he got the results he felt there was enough eveidence in the scan (lesions on brain) for me to be referred to Neurologist urgently. There had been no fuether degeneration of my spine and he felt the other symptoms I had would not be connected anyway, so here was someone who recognised the difference and felt that there is someting neurological going on.
Unfortunately it was when I went to Neurologist he referred me to that things got difficult as he was, like so many other neuros dismissive and put my symptoms down to stress caused by back pain.
I think for any of us who have had previous surgeries etc neuros seem to prefer to assume that this is the cause.
A full spine MRI will show up if there have been any changes in your back and will either confirm or rule out nerve compression/damage caued by your back.
Anitra is right, problems with eyes, upper body, face cannot be be attributed to previous lower back problems. However problems in cervical spine such as arthritis, nerve compression, could cause these problems, so i’m told.
Hopefully your MRI results will give clearer picture. I’m seeing a different neuro on Monday and have been told I will now have further MRI and an LP. Its a long road to dx my friend but hang on in there, you know best wha your body is going through and don’t give up till you have answers.
Whingyou the very best of luck xxx
my neuro appointment lasted 3 minutes and was told all my symptoms were caused by drinking 4 cups of tea a day, so I think this is a theme showing some neuros are as empathic as house brick. I have my MRI next week but not even sure its going to look at everything, so at least be reasured they are doing a full scan on you? good luck with the scan, have you had one before?
Thanks all of you for the feedback, i forgot to say i also have terrible memory issues and have the attention span of a fly, never used to get that until recently after what i presume was a relapse, symptoms come and symptoms go over months or weeks, sometimes i cant get out of bed as i feel so i’ll, my new GP refferred me to the neuro after years of seeing different consultants for all the different issues iv’e had saying he was concerned this maybe fybro or MS, last saw my neuro surgeon around 12 months ago and he did an MRI of my spine which showed no compresions and he said for someone with metal work holding up the lumbar area it was in remarkably good shape. i also have develped tremors over the last few months which seem to have supperceded the cramps i was getting. just want to know whats wrong so i can deal with it