Hi all
I have posted on the new/before diagnosis and have looked at this topic, I seem to be able to relate to some of your posts on here. I am awaiting my next Neuro appt but am very sceptical at what the outcome is going to be, my major symptoms started over a year ago and there has been no let up!, although looking back over the years there have been previous episodes over the years, I am looking for advice on what will happen if my Neuro releases me?
He was convinced a few months ago it was MS ( finally admitted at my last appt) but brain scan came back clear, I have too many symptoms to mention!!! but I have now developed problems focusing ( thinking it was tiredness I went to the opticians) my eyes have deteriated in a few months although eyes seem healthy they think the muscles are not reacting quickly enough so may want to send me to the hospital for this??? , the optician wants to keep an eye on this… pardon the pun!, I now also have developed tinnitus which is bloody annoying!, this has all happened since my last appt at which my neuro suggested he would have no option but to diagnose with ME/Fibro as nothing is confirmed ( he didn’t want to as he states I wouldn’t get the help I need) but looking at both conditions although very similar all my symptoms match MS, I am now sceptical that my neuro will discharge me, where do I go from there, do I have to register every new symptom or episode with my GP? Just don’t know if I can request to stay on the Neuro’s list as I can’t face the waiting/referring game again, any advice before my appt would be really helpful Thanks
Hi Busy Mum, sorry to hear you have been having such a rough time.
It’s very difficult if the MRI is clear as of course that’s the first thing they will look at in possible MS. You could ask if he will do a lumbar puncture, which will show if the immune system has been active in your central nervous system. That can give a diagnosis of MS.
Apart from that it’s very difficult. If I were you if he can’t diagnose MS I would ask to be diagnosed with ME/Fibro. I was dx with ME initially and saw an ME specialist who sent me for a brain MRI and I did have ‘bright spots’ and then had LP to confirm.
At least it will be a diagnosis and keep you in contact with a specialist…who will probably order another MRI at some point. So it’s a roundabout way but would be worth it if the neuro discharges you.
I know it’s very frustrating not being able to get a dx, but hang on in there. Just because the MRI is clear now doesn’t mean it will be in a few months or a couple of years.
All the best,
Pat xx
1 Like
Hi
Did you have a spine Mri and lumbar puncture done, if not, it maybe worth asking, as sometimes a second Mri can show lesions that the first one missed.
With regard to new symptoms, keep a note of these so you can tell the neuro at your next appointment. Unfortunately, ms is difficult to diagnose, as there is no one test to say either way, almost as though other things have to be eliminated.
Hope your appointment goes well, take care.
Pam x
2 Likes
Hi, i’m in a similar situation… no proof, so no diagnosis, but left with a significant disability, needing to use a wheelchair, it can be so frustrating. I was told that it was stress, and then discharged. For a long time i felt like a fraud as if it was all in my head. The best thing for me was to have cbt …which was recommended, it was even suggested that it might cure me…well it didn’t cure me but it really helped me to come to terms with my disability and to feel better about myself and to come to terms with being in a wheelchair. The other thing i have done was to ask for a second opinion which i got out of area… although i still have no answers it means that i am back in the system. At this stage i am no longer chasing for an answer but knowing that i have a neurologist helps me feel better. At the end of the day,… It is what it is … but because i’m in the system i don’t feel completely abandoned.
Michelle x
2 Likes
Hi
Thanks for your replies, it really helps to just get another perspective. As my last appt was heading towards ME/Fibro, I have researched both conditions and as my symptoms are progressing I do think I’m heading down the MS route.
The brain and C-spine scan was appalling quality, I had a previous C-spine done last May (paid privately) as I was told I had a trapped nerve this resulted in Cervical/Spinal Mylopathy, at that point I couldn’t move without screaming in agony and with a job and 3 children it was a difficult time, the Neurosurgeon saw my MRI to say he was shocked was an understatement! he booked me in for an urgent op which I had last July, I have a cage and 2 new discs now, my new symptoms started about 6 wks after surgery, the reason I am telling you this is that I requested a copy of my new scan and compared it with my old scan (as the scan lady stopped the scan and asked me some disturbing questions) did I have something in the back of my head? have I had a substantial injury/accident to the back of my head? when the report came back it said " Tecnique: Non-enhanced series" it states that there is some evidence of surgical intervention indicitive of disc replacement therapy at C6/7 and MAY also have been some at C5/6??? if he can’t tell that I have 2 new discs, fusion and a cage then can he really see what is going on my brain??? so I requested a copy, the images are all blurred, it looks like a chunk of my brain/skull is missing on a some of the pics, looks like a problem with the machine ( it looked ancient) so I asked for a 2nd opinion, my consultant said the Radiologist who reported on my scan was a very good consultant and he was happy with the report but couldn’t explain anything else. When I look at my 1st C-spine scan it was so clear this was also done without contrast, then I look at this one and it really is poor quality, all the time I am waiting my symptoms are getting worse and new ones pop up daily, I did take a daily diary with me last time and a full list of symptoms, my Neurologist just stated there was a lot of symptoms!, however he did admit he was looking for MS but as the brain scan was clear he left that there, I think some are related to the nerve damage which they said I probably would have after my neck op but most are completely new and different … if that sounds right? I am now considering trying to get the money together to have a repeat scan done or asking someone away from this particular NHS trust to have a look, basically a 2nd opinion which I didn’t get when I asked previously. I am just disappointed and worn out with trying to sort/research what should or can be done to get the correct tests and procedures. I do after research now believe that I should have had a scan with contrast and a lumbar puncture done so unless my consultant agrees and doesn’t discharge me with ME/fibro I am probably going to have try to pay privately which shouldn’t happen, I just want someone to tell me I am not just over exaggerating.
Thanks
lf you have any metal in your spine - new discs/fusion/cage - will this prevent you from having a MRI scan of the spine. l have replacement hip and knee - so l know l could not have a MRI in those areas.
Some of these MRI scanners are so old - almost obsolete - and do not give a good clear reading.