I desperately need medical help and investigating…again, but I’m scared of being fobbed off with some kind of functional diagnosis.
Over the past 20 years ish I’ve had random episodes of numbness in my leg, loss of continence, diagnosed with trigeminal neuralgia etc. I remember getting very scared after an episode of hand tremor too. I paid to see a private neurologist and had a brain MRI around my TN diagnosis too (idiopathic but confirmed and treated with carbamazepine). 4 months ago the right side of my mouth dropped and they said it was a hemiplegic migraine (no headache symptoms) and I was put on beta blockers. The past couple of months I’m experiencing debilitating fatigue, vacant episodes, lots and lots of balance issues, and my right hand has pins and needles and is cold to touch. I had bloods which didn’t show much except high cholesterol. I can’t seek help and be lumped with something it’s not or disregarded. I’m 42, just don’t know where to go with this. I know something is wrong and worsening now.
That all sounds very distressing for you and I’m sorry.
Your concern about being fobbed off is very understandable: it’s been a long time and you don’t know what the matter is yet. But really, doggedly pursuing a diagnosis is the only show in town, so I think you need to do your best to brace yourself and press on.
There’s something amiss. And it’s true there’s a possibility that you’ll never find out what. But it’s equally possible that you will. Might as well try. Good luck.
Did the MRI show anything at all?
No, just congested sinus cavities but I don’t have any sinusitis symptoms so I didn’t pursue that
I have an update, my partner insisted I saw a GP after I was struggling to get up the stairs due to leg weakness. I did, told him I was worried about being fobbed off, explained my partner’s concerns, and he examined me. He said my legs are weaker than they should be and going up stairs on all 4’s isn’t ok. He’s referred me to neurology. I live in the east of England, does anyone recommend a neurologist to request?
Hi @joannaholt0911, sadly no private neurologist recommendations - I’ve only been through the NHS at this point. Yes, definitely good to really push and investigate if you’re struggling with stairs - really hope you have some answers soon.
I’m in the North West and looked for a Neurologist that specialises in MS within my area.
I saw him privately at first and after my consultation and MRI he then transferred me to his NHS list. I’m still under his care 3 years later.
Perhaps you could do the same in your area ? Take care
Hi Joanna, welcome to this fab forum. Lots of useful inormation and support here.
I’m pleased you’ll be seeing a Neurologist at last. It might be the start of a long journey to a diagnosis because other possible conditions need to be ruled out.
It’s a circle of appointments for tests, results and if any test is ruled out then another possible condition is considered. So more tests & results.
Don’t let doctors delay or dismiss your concerns because delays between appts for tests and then appts for results all take up time.
The symptoms you describe may or may not be a type of MS but the limbo land of the unknown is torturous. Moreso nowadays with Dr Google. So you’re doing exactly the right thing to see your GPS & keep on top of things.
I learned to regularly check that the hospital or GP had received my test results within 10 days because my hospital Neuro Dept. had previously lost my notes for 9 months!
You’ve already been patient but fobbed off with no further action. Thank goodness your partner advised to see your GP again.
Please keep on, and on and on until you’re satisfied all avenues have been thoroughly explored.
Prior to the Neuro appt. try to make a list of all your symptoms & how each affects you.
Hope you have some answers soon & that you pop into the Forum. There’s lots of good info & support.
Chrissie
I’m in the east of England, and I’m under the Norfolk and Norwich hospital. They have multiple sclerosis specialist neurologists, I’m under Dr Lee. I was transferred there from James paget hospital, as they don’t do DMT treatment and wouldn’t recommend it for me so had to fight for treatment! They also have a very good neuro urology dept which is very helpful.
I hope you finally get some answers and help.
Yes I’ve been referred to the JPH as an urgent referral but it’s a 16 week wait. I was thinking of asking for the NNUH or Addenbrookes instead. My left hand went numb today too 
Unfortunately JPH can’t prescribe DMT, and they said my MS was mild and didn’t need treatment even though I’ve got a brain stem lesion that’s caused a lot of issues! I used the nice guidelines to be referred the the Norfolk and Norwich hospital and started a DMT once the blood tests had been completed.
I was seen by two of the neurologist in my 4 week stay at JPH hospital, and they dismissed a lot of things, and didn’t even put on my discharge paperwork they’re diagnosed MS, told me I also had hemiplegic migraine and it was actually Trigeminal neuralgia! They told me I’d get the feeling back in my head and face, but it’s still numb 19 months later. I’m under Dr Lee at the NNUH he’s an MS specialist. I hope you get an appointment soon, but I would try the NNUH as they’re the prescribing hospital.
Thank you.
I had requested my referral go to a tertiary centre who rejected it as I’m not in their catchment area. So now it’s gone elsewhere. However, I saw the rejection letter on my NHS app which really saddened me. The neurologist there hasn’t met me nor examined me/spoken with me and they said “this is likely a functional neurological disorder”. Apparently my vacant episodes aren’t indicative of anything of concern and the muscle weakness in my face that caused the droop isn’t anything of concern either.
It was such a heart sink moment, to have that assumption made about me. How can I hope to be examined and helped with an open mind by anyone when a neurologist can say that without checking anything? I feel like I should just shut up and live with these symptoms.
How can they not say facial droop is not a cause for concern 
facial droop and leg weakness on the same side ended up with me being in hospital for 7 days having iv steroids and a definitive diagnosis of MS after an emergency MRI. Keep fighting whatever you may or may not have something obviously isn’t right and you deserve answers x