I got a copy of the letter today and it’s as I thought. The neurologist has responded to the neurosurgeon who did the ‘urgent’ referral last November and says:
I now have the results of the MRI scan of the brain and MRI scan of the cervical spine for the above patient. The MRI of the brain showed some non specific foci in the subcortical distribution which I do not think is of any clinical significance. MRI scan of the cervical spine showed no evidence of compression or canal narrowing.
And that’s it!!! Job done!! No follow up - no chance of asking ‘ok - where do I go from here?’
No further exploration/explanation or ideas about what else may be causing my symptoms & clinical signs - I’m basically back to square one!!!
Oh Jen that’s just terrible. Even if it’s not ms there is obviously something. Why don’t you ask for a second opinion, you need to get to the bottom of this. Sending you huge (((((HUGS))))) Xxxx
Added to everything - I dropped my perscription for the glaucoma drops into the GP Surgery on Monday.
Then when I went to collect it - first of all she said they hadn’t had it - when I insisted I’d dropped it in she reluctantly searched again saying no it’s not here - I refused to budge so she looked on the computer and said that oh yes they had had it but that it had to go back to the hospital as it didn’t have the strength on it
I said yes it did it had 0.3% strength written on it - I saw it myself - so she then said they had given a prescription for drops that don’t exist - ok I said when will it be back - she said she didn’t know.
I rang again today and they said my prescription was in the chemist - I went to collect it & lo and behold it’s for exactly what was written on the original prescription - same drug same strength exactly!!!
Is it meeeee??? Did I do something wron in a past life??? Eww x
aww Hun so sorry you are having a hard time…and the prescription thing certainly doesn’t help!! I think the drs are all going mad…can’t blame it on the weather as its not hot enough to say that…lol I went for x ray today of my collar bone today…as its not right, a hard bump has appeared in last week near shoulder end… and been having shoulder probs since feb…can hardly use my arm at all now…gp only requested collar bone x ray despite me having rotator cuff and winged scapular …so once I told them of the probs they did. both…still have to wait for results…in meantime am in allot of pain and tring to freewheel around the house one armed…and using my slightly better leg to scoot Long but can’t do that for long…get so tired and I don’t want to put strain on my good shoulder…anyway they said they are going to try and get results back to gp sooner…asked my Age too…well the radiographer dr did…surely it’s on my notes!! arrrrg lol !!! hang in there there Hun…I would go back to gp the neuros have only done half the job…it’s their job to investigate…not shut the book because it’s not what they want to see…and let’s face it they are not being through by doing this… hugs em
To be honest I’m just so tired of it all - I’m seriously thinking of just giving up on trying to get a diagnosis x what can anyone do anyway??
I’m a lot better than I have been over the last 4 months - I can’t say I’m well - I’m far from it - but at the moment the only symptoms that are still giving me problems are
the stiffness/pain which means I can’t walk far - so I just won’t walk far!!
the numbness seems to have subsided back to just my left leg
I still can’t feel my bladder at all - but I’m managing that by just going to the loo at regular intervals during the day
The heat intolerance and altered perception is not nearly as intense/constant as it was - so I can put up with it
The cramps & spasms are now mostly at night - so again I can put up with it
I’m adapting to the cognitive issues & managing them with lists and avoiding certain situations!
Basically most of the physical things are now tolerable (ish)
It’s far from ideal but to be honest it’s my mental health I’m more concerned about now - I’m feeling like I just can’t go on fighting - these ‘brick walls’ I keep hitting with the doctors etc seem to be never ending.
If I ask my GP to refer me again - there’ll be all that horrible waiting for appointments and tests then waiting for results - only to be passed from pillar to post again and again!!
I just can’t face it!!!
The only thing that worries me is if I get another ‘relapse’ again and what do I tell work!!
Jen you are so strong and have come this far, don’t give up now. You know we are all here for support. You shouldn’t just have to put up with the symptoms, they are affecting your life and they need sorting. Is there a chance you could go to a different hospital? Stay strong and take care Xxx
I am sorry you still have no answers. I can only suggest you go back to GP and find out what happens now. Its rubbish though isnt it. We know our own bodies and we know when something is wrong with them. Im really pleased it doesnt seem to be MS but surely you still are entitled to get some answers.