Had a letter from Neuro after “essentially normal” MRI basically saying go away - I will let you have another MRI in six months of you really want one but am unable to explain your symptoms.
She then said her examination pre MRI turned up nothing wrong neurologically except balance even though at the time she told me she was pretty sure I had RRMS and even put this in her letter. to the GP.
She said the neuro physios had only found evidence of some spasticity in my right leg although the physio told me they found balance issues, right sided weakness and other things as well. It is like the neuro doesn’t remember me and has skim-read previous reports in a hurry.
So yes I will book another MRI in 6 months and I am asking my GP for a copy of the physio’s report. I am bewildered by her attitude - “I thought it was MS, can’t prove it at the moment or be bothered to investigate any alternatives so go away.” I though doctors were supposed to investigate symptoms to find out what is causing them? I now walk any distance with a stick, have balance and dizziness problems every day, fall over occasionally, have burning tingling in my left thigh and am now having problems with spasms, cramps and stiffness in my right arm as well as my right leg. Then there is the fatigue, losing words, dropping things frequently and all of that other good stuff. Am I supposed to just live with this happily because she can’t make a quick easy diagnosis. Majorly fed up!
Hallo luvie, I know exactly how you feel, as I went through years of test and neuros saying they didnt know what was wrong with me. Then I was wrongly diagnosed with PPMS for more years.
In 2012, I was told I didnt have MS of any kind, but a genetic disorder causing lower body paraplegia and bowel/bladder problems.
Stick with it and go for all the tests they offer.
I would Poll, but they aren’t offering any!! I guess I will have to wait for an MRI in six months and hope that I don’t get any nasties in the symptom department in the meantime. That’s my point really, I feel I have just been abandoned to get on with it.
Oh Tinga, that sounds very like my situation! My MRI was ‘within normal limits’ and the only time MS was mentioned was when the neuro, having put me in a position to have to say my suspicion of MS, did agree with me. The differential for my diagnosis was between FND and MS. Clear scan, FND diagoisis…but they didn’t do any tests like EP or LP (not that I’m keen on the latter). I’ve developed new symptoms since then so its back to see a different neuro at the end of this month. I also walk with a stick due to balance problems, dizziness and involuntary movements. I have Chronic Fatigue and use a wheelchair occasionally and have just bought a mobility scooter to help with the school run. Have a look at www.neurosymptoms.org and www.fndhope.org - it might be helpful. Best of luck!
Thanks for the links, Reiki but on reading those sites, it seems to me that FND is a diagnosis given to make the patient feel better and “diagnosed” when - either the doctors have no idea what the problem is or - they believe that the patient is actually expressing mental problems through physical symptoms but don’t want to actually say so to the patient. A dustbin diagnosis in other words. Like you , I don’t feel that this is good enough although to be fair I haven’t been told I have FND nor anything else for that matter!
It seems to be a common occurrence does this; the blurred confusion and doubt of whether it is MS or not. I like others have endured about 5 years of tests, mri’s etc etc… ultimately I had the Lumbar Puncture (thats another story!!) but that confirmed my PPMS. I did along the way however, insist on 2nd opinions etc as I felt the same as you…bewidered and abandoned.
It does also depend on what neurologist you see / get assigned, and I think even what part of the country you live in!!
It does make you wonder when I recently changed doctors, and was asked in for a review. He had my file in front of him, which clearly stated I had a massive heart attack in 2008, with a list of medication I was on, and yet he still asked me… ’ so why are you on all these meds?’
Oh and previously I have been told by a doctor…’ hmmm… I don’t know…have you googled it?’ he then googled it in front of me.
Frightening huh??
But anyway, keep your chin up, and keep pushing them.
Tinga, I know, it does come across like that.There are a couple of doctors who see it as a genuine illness though. I’ll see what the 2nd opinion neuro thinks. When I got my mobility scooter very recently, it was useful to have something to put on the form (so I didn’t have to pay VAT). I’m still open to the possibility that I have MS but if I end up with the FND diagnosis again, I can live with that. I may still not be convinced but at least it is confirmation that I have a neurological illness of some kind and I’m not ‘making it all up’.
Thanks Stuart - I wish I could have a lumber puncture ( never thought I would say that ) but the neuro says other tests aren’t worth it if the MRI is clear!! I will wait to see what the second MRI shows. I am also annoyed because she made factual errors in both of her letters.
Thanks Reiki - I didn’t mean to sound off like that - sorry - was just still so angry about the dismissive tone of the letter. Am not being offered a diagnosis of FND instead, just…nothing. I understand that about 10% of people who are eventually diagnosed with MS have clear MRI/s initially and am also prepared to be told I don’t have MS but would then like to know what I DO have!
Tinga - no need for an apology! I’ve felt the same way and am in a similar position…except for the FND label. I didn’t even get that for over a year. Limboland is frustrating and I wish doctors would help us through it with a little more bedside manner. My neuro didn’t think an LP would be helpful, either. I’m quite certain that there are other tests they could do. EP? A stronger MRI? With contrast? I’m intending to be no-nonsense when I see my neuro. Proof, one way or the other please.