Hi Everyone, new to the page - looking for some advice on what you experienced before you were diagnosed, how long did it take for you to get diagnosed, did you have to push for further tests?
I voiced concerns to my GP back in March/April re new symptoms I’ve been experiencing since January, she got me in for a neuro exam and decided to refer me to the neurologist for a ‘second opinion’ based on her findings, I’ve just got the neuro referral appointment for next month and not sure what to expect, from everyone’s experience, will I just get another neuro exam or will the neurologist send me for an MRI and/or lumbar puncture?
These are the new symptoms I’ve been having the past 7 months; I say ‘new’ as I do have fibromyalgia, osteoarthritis in my hip and sciatica, but I’ve not had these symptoms before:
- sharp electric like pain in my left cheek, comes and goes very quickly
- pins and needles and numbness in my left arm, hand & fingers also weird and sometimes painful sensations in my left arm
- cold/wetness feeling on leg
- few times I’ve felt like I couldn’t move one half of my body, both times this has happened after a really bad migraine
- mobility problems, I’ve been restricted to the upper part of my home the past 7 months and need to use a wheelchair when I leave the house due to weakness in my legs and debilitating fatigue, any small expulsion of energy completely drains me, I’m also very clumsy and trip up often even with my partner helping me, if I were to stand and close my eyes I’d fall flat on my face
- eye problems, I get double and blurry vision and pain when moving my eye (left)
- severe migraines with numbness on left side of face, eye pressure and runny nose
- I feel like my body is vibrating or trembling at times but not enough for my partner to notice, I’ve also noticed a tremor in my arm when holding my phone
- Random sharp shooting pains in my left leg, they have no pattern it comes and goes
- Cognitive issues, can’t get my words out when speaking, stuttering, confusion, memory issues
- Swallowing difficulty, feeling like I’m going to choke and can’t swallow food, this doesn’t happen every time I eat
- Difficulty holding in urine
I’m just so unsure what’s wrong with me and finding it hard to accept this as my ‘new normal’, 12-18 months ago I was out with friends at the pub or going on dates with my boyfriend to the cinema or to restaurants and working full time at my admin job which I loved. I had a terrible mental breakdown at Christmas and things have just went from bad to worse from there.
I’m a bit worried that I’m going to be fobbed off by the neurologist and have to really push for the MRI and LP, only reason I say this is because how difficult it was for me to get a fibro diagnosis.
Thank you any advice is really appreciated.
Hi Jamie
I’m pleased that you have an appointment with a neuro next month.
there will be a discussion of your symptoms so far;
VEP (Visually Evoked Responses);
MRI;
Lumbar Puncture perhaps.
none of these are painful but maybe if you suffer from anxiety you could ask your GP for something to help you stay calm.
I found the Breathworks Mindfulness course helpful, using deep breathing.
hope it goes well
Carole x
Hi Jamie, well yeh, quite a few of your symptoms do sound MS like.
I`ve had some of them myself.
I doubt the neuro will fob you off…fibro is a hard one to diagnose. I expect he will order the usual tests ie MRI, LP, VEP…bloods
MS can be hard too, but some folk with it dont wait too log for a diagnosis.
My own case was different…22 years to find Spinal PPMS…but that`s quite rare, so dont dwell on it please.
Take care, Boudsxx
Hi Catwoman
Thanks for the reply, I do struggle with anxiety so I’ll ask my doctor for something to help my nerves, do you know if its common to have these tests on the day of the appointment or will it be another waiting game for a referral letter for tests etc, thanks for the advice it’s much appreciated x
Hi Boudica
Thank you, I just hope I don’t have to wait too long, once I know what is wrong I can then start to deal with and accept it.
I know I shouldn’t be so cynical but I’ve not had the best experience with doctors, my last GP who I called constantly because I couldn’t get to the practise, told me that I needed to exercise more and ‘just try’, this was after me crying down the phone to her that I couldn’t walk and felt like I had to use a wheelchair, my new GP is much better though.
22 years that must have been an incredibly difficult time for you 
Thank you for the advice I appreciate it xx
Hi Jamie, I’m currently going through the process of possibly being diagnosed with MS. I had my first appointment with the neurologist end of Feb and I was down to have an MRI and possibly an LP, if the MRI came back clear. Then Covid happened. I have had my MRI, but it took more than 6 weeks to get the results and I am still waiting for the letter explaining the findings, although I do know I have to go for the LP… I’m terrible with doctors, just having my blood pressure checked sends my heart rate sky rocketing, so the thought of the LP fills me with dread, but I know I have to hace it. I know you can have sedation for the GP for it, so if you are someone who gets anxious about tests, perhaps ask your gp? I am considering contacting him, when I get the date for the LP. Originally my problems started in September with an emergency visit to the eye hospital for sight loss, so its been nearly a year, but i think covid slowed it down a bit. I am due a second appointment with the neurologost end of September and by then he should have a better idea of if I have MS or not. I don’t know if thay helps? From what I have heard and read and experienced, these things take time. I hope your appointment goes well and that you get answers soon!
Hi Bettie
Thanks for the reply, do you mind me asking what other symptoms you’ve experienced? I’m terrified about the LP, I’ve been told by some its sore and some that it isn’t. I hope you get your results soon and I appreciate your advice thank you! X
Hi Jamie, my only symptom was sight loss in my left eye, at the time I was worried that I was going blind and I would never recover my sight. It was diagnosed as optic neuritis by the eye doctor, and it triggered me being sent for an appointment with the neurologist. The neurologist did some blood tests and provisionally diagnosed me with Clinically isolated syndrome, but he wanted me to go for a spinal MRI just to be sure. Then lockdown happened. During lockdown my right eye started doing what my left eye had done, so I now have sight loss in my right eye (my left eye sight has come back to almost normal) I also have numbness on my back and tingling fingers – I have told the neurologist about the eye, but I haven’t mentioned the numbness or tingling yet because it might just be me over thinking things. I think it was me mentioning the right eye during lockdown that got me sent for the MRI when I did - if I had kept quiet, I think I could possibly still be waiting for tests. I am also terrified, but trying to be brave – trying to focus on the bit after, lying down for an hour afterwards sounds good! Keep me posted and fingers crossed! B
Also, sorry it took so long to reply, technical problems with this website, they seem to be fixed now!