Hi everyone, hope you’re all well I’m new to this, so I hope I’m in the right place. Briefly, I’m almost positive I have ms, I have every symptom and can find no other explanation for why I am so ill. I have been battling the medical industry for too long now and things are getting too bad thatI can’t cope with life anymore. I paid to see a neurologist hoping he would suspect ms but he said I was in the wrong place and I had too many symptoms to have a neurological problem - he dealt in things like epilepsy and apparently one or 2 symptoms was too much. He said I needed to see a neuropsychologist. I did tell him I suspected something far worse than just fibromyalgia/me/cfs because of all my cognitive problems etc, and he said to me you are right, there is something serious. I was just wondering if because the neurologist has sent me away, if I am still looking at a diagnosis of ms ? As I’ve been searching for answers for ages and it seams ms fits me exactly, but maybe Im wrong and there’s another similar illness ? That’s for taking the time to read, any help would be appreciated !
Hi I’m newly diagnosed so not really an expert on MS, I’m still adjusting and learning about it. When I got diagnosed with MS I had to have MRI scans of Brain,neck and spine and have a lumber puncture. The first consultant I seen wasnt specialised in MS when I was admitted into hospital but ordered the tests as I had no feeling in my feet. After test result showed signs of MS then I was referred to MS Specialist. I had other symptoms which they stated was ms related so had test in those specialised area once the consultant in Neurology referred me. What symptoms are you getting? The neurologist you seen is he referring you to someone else? If I was you I would avoid googling and try to self diagnosis, Its hard I’ve been there and done but it just increases your worry. I would list all your symptoms and mark down dates and how long they last. You should then make an appointment with your G.P but wouldn’t state you suspect MS but advise them you are worried and could your system be investigated. Your GP should hopefully then refer you to someone in Neurology and possibly get some test done. Hope this information helps, try not to worry. Polly x
Symptoms be investigated no system, predictive text doh! Polly x
Hi Polly thanks for the reply ! Sorry to hear about your diagnosis hope you are well, The neurologist referred me to a neuropsychologist but I am yet to see him, I took a list of synptoms to him with me as someone with ms said they shared majority of my symptoms - I didn’t google it at first. I have been going back and forth to the gp but they are doing no more than listing it as ME, despite the increasing worrying symptoms such as memory loss and cognitive problems God there are so many symptoms, but briefly; Chronic fatuige Poor memory/concentration/balance/coordination I feel like I’m drunk and alienated parts of body/shakiness Word slurring and other problems Extreme headaches and sickness Weakness/joint pains Skin numbness/ feels like certain patches are severely burnt Heart palpitations/shortness of breath easily Bladder problems at night - I go in excess Cognitive issues - I know how to do things can’t do them, simplicity confuses me Thanks for the reply Polly ! Anything is so helpful Megan x
I am probably way off track with this but it may be worth clearing it with your doctor; http://www.hughes-syndrome.org
It is your extreme headaches; MS does cause headaches but they are worse and more frequent with Sticky-Blood; otherwise symptoms very similar.
G
Hello Megan
I’m confused, that you paid to see a neurologist with the above symptoms and he didn’t recommend MRI scans. Most of your symptoms could relate to neuro type problems in my opinion…I’m just a qualified nurse though
I spent two years of suffering with chronic headaches/migraines before being diagnosed with ms.
I am NOT saying you have ms, just that you are having enough symptoms that I think demands further investigation, that should include MRI. Speak to your gp.
Take care x
Thanks for the replies, it’s a push to get anything out of my gp I’ve been going with these problems for 4 years - although the cognitive ones are new, they just pin it all down to CFS which te neurologist agreed with me that there’s something more. I had a 20 minute consultation with him and he said I was neurologically fine. I’m hoping the neuropsychologist can help further though, if not I don’t know what I’ll do.
G
You make a good point. I have a friend with lupus, so this too is worth considering. That can be sorted with blood tests. x
Your gp will not push for neuro referral and scans because it cost the practice money.
You will have to ask your gp Megan. Its your body…that’s what I would be doing. 4 years is a long time. x
Blood tests are all clear apparently. I don’t think the doctors believe me sadly , I’ve seen an occupational therapist and physio at the ME clinic and they just tell me to quit my studies and do nothing, which from how I feel will solve nothing - apparently it’s their way of ‘curing’ ME, there has to be something more everyone’s missing I know plenty of people with fibromyalgia who don’t get any of the symptoms I do beside the tiredness x
Like I said Megan, speak to your gp.
If your not happy with your gp, change to another one.
You mention you get extreme headaches and sickness…that’s not normal and needs sorting.
Are you young Megan? maybe you should take someone with you to the GPs x
I agree with Blossom you should go back to see your GP, sometimes they need a nudge. Polly x
I’m 18, I’ve have been taking my mum more recently as the memory loss etc and cognitive symptoms have got to a point where they scare me. I make up conversations and forget real ones have ever happened. She can be quite forceful, but I think your right in maybe it’s time to change GP as I do think there is something more serious and they just don’t seam to be acknowledging it, just putting me on antidepressants all the time which is ridiculous as I am no way depressed! Thank you for your help everyone, it means a lot x