Well MRI results are in!. I have a “few ill defined signal changes” on my scan… Sadly the neuro who didn’t listen to all my symptoms and jumped on one which was my headaches appears to think its all to do with migraines. Haven’t had a headache in two months!!!.. And now two month wait to see him again!! Grrrrrr… Time to go private and sort things out methinks…
Oh no how frustrating A
Oh, what a pain.
They do tend to focus on one thing until they can prove otherwise. Its why I have seen 7 different specialists in 2 years.
If you have the means, then I would say go for it. I don’t, so am stuck with the good ol’ NHS.
Good luck with what you decide to do.
Thanks guys Yes very frustrating. Off work and he’s always so blasé about it all saying the findings are “reassuring”. Angela, very luckily I signed up to a healthcare scheme through work so not the nhs appears to have slowed to an almost complete halt I’ve gone through them. 8th October to see a hand picked specialist who will hopefully be able to start getting something resolved. So another few months off work but with hopefully a more positive end
Good luck! Not too long to wait to see a different specialist. I hope that you get some clarity soon!
Hi. I know just how you feel. My nurologist individualised each symptom rather than look at the whole picture. I’ve been waiting 3 weeks for MRI results. Nuro secretary said I don’t even have a follow up appt. waiting for letter then going to go private for 2nd opinion. Good luck
Moysek, Keep chasing them. Apparently mine were available to the neuro on the computer systems but they normally just wait for the posted version!!. Backwards healthcare if you ask me!!
sorry for your frustration, keep going.
I went private in the end, only to find he was the first Nuero I ever saw on the NHS … he was standing in for another Nuero at the time but when he wrote the letter to my docs about his findings the letter was addressed in another Nuero’s name and I spent 12 months trying to prove the man on the letter was not the man I saw. So when I walked through the door of his private consultants room you could have knocked me over with a feather.
I had to pay for intial appt then he put me back on NHS for all the tests and I see him every 6 months, since seeing him firstly in Jan '12 his attitude has changed. So its good to hear you are not giving up.
keep us posted
So frustrating, good luck with the new neuro.
Thanks medion and no i won’t give up.
The two possibilities that keep coming up are MS and migraines. I’ve only ever experienced a small number of migraines between january and june this year and both of these could explain the signal changes apparently although the neuro appears to be going down the route of migraines at the moment. Frustrating as i haven’t had any headaches since june and still suffering with the rest of the symptoms.
At least the neurologist i’ll be seeing private is a well known MS specialist and hopefully he can give some kind of answer one way or another and hopefully it will be a little bit quicker!!
Hello, I have been reluctant to post to this as I’m out of my depth but I have seen on here that you can experience migraines without getting a headache. I hope another more knowledgeable member can elaborate on this. I wanted to reassure you that this could be a possibility. Sam x
Hi Sam Yeah I’ve done a little bit of reading and have seen that too. Personally I hope it is and then I can get back to work. My only problem is the symptoms are keeping me off work and the two to three months wait for the neuro would cripple me Fingers crossed for a migraine dx though
Hello. I have chronic headaches and migraine…its what I was initially referred to neuro for. As I understand it, brain lesions caused by migraines effect different areas of the brain so a good neuro will know this. All the best with you private appointment. x
And it gets better.
Neuro has just called me after my doc asked me to ask him for some migraine treatment if that what he thinks it is. He called me and after i explained i haven’t had headaches for more than eight weeks he feels the medication won’t help as it only helps if you have headaches!!. Now not sure if it is migraines as i’m not suffering from headaches but doesn’t know what it is and said “it’s not really worth investigating further!!!”
Hmmmmmmm… gritted teeth as i explained to him how much its affecting me (off work and always exhausted!!!). eventually said would refer me to another doc for second opinion but couldn’t offer idea of how long before appointment.
Kind of glad i’ve asked to go private now!!! :-s
I have been dx with migraine aura’s without headaches and offered meds as he seems to think symptoms are migrainess in nature. Spoke to my doc about meds he recommended and he did not push me to have them either.
there are so many people out there with simular symptoms to a lot of us on here that its pretty scary what could be causing them. If I was looking at a ‘conspiracy theory’ I would say the professionals are choosing a ‘wait and see’ stratagy.
I’ve not been dx anything yet but I have had episodes of what I can only exlain as being kaleideascope vision about three times now since the start of July. Since everything pretty much went belly up!
I’ve never really suffered from headaches at all in my life, but these epsiodes start with an oblong shape in the centre of my left eye flashing and spinning and slowly engrosses my complete eye. I do get black floaters from time to time as well. All I can do is lay down and let things pass. If these are migranes, then I would half expect some pain to go with it.
All this malarky is really quite weird, feels like i’m tripping at times.
I do have migraine with aura occasionally were without pain and told 2years ago that some of my symptoms were migraine (happy days) started on preventative which stopped excruciating headaches however still got new non migraine symptoms and apparently if the other symptoms were migraine they too would resolve with migraine treatment but haven’t Ax
My mum and brother both get really bad migraines but I never did…until pregnancy. I started to get painless auras. It happened again after I gave birth and had post-op complications, so when I also got split vision, which had never happened to me before (nor since, thankfully.It was quite scary.) I got checked over twice before they let us go home. They finally put it down to migraine.Now I’m wondering if it was that or something else…like an MS symptom?
Well finaly got letter re MRI results. Al cear. states MRI normal. Diagnosis, dystonic tremor and migraine?!!! No comment re whats causing my deafness, burred vision, dizziness,parasthesia in legs, feet and bottom,frequency of passing urine and burning sensations to various parts of the body and brain fog!. Think im just going to give up,shut up and put up with my symptoms and try and just get on with my life.