I’m so fed up today. I am seeing the neuro after a 4 month wait tomorrow. I was refused an MRI in december due to having a reveal heart implant in, even though it is safe. I had the MRI on monday and was told they would do the report as urgent due to them refusin me so it would be ready for the neuro appt. I have just rung to see if it is ready and it’s not. I feel so fed up, they took my license off me in august and now i feel there is no point in going tomorrow as there will be no answers.
Sorry to hear that Superbecks. That sort of thing is really frustrating.
My MRI results were not available at my last neuro appointment and it was a bit of a joke appointment if i’m honest. The neuro got round to viewing the MRI about two months afterwards and has commented that there are lesions suggestive of demylation. I got a letter in the post.
I have an appointment for tomorrow with the neuro, so will be interested to hear what has to be said.
I’m so sorry to hear this, I would be angry too.
You could try ringing Neuro secretary first thing in the morning…kick up a fuss. They just may reschedule for next week. It’s what they should do. Good luck xxx
Ok i will try that, thanks blossom. I rang the mri dept and she said she would email the consultant to see if he could do it but she couldnt tell him his workload…i understand that i work in the nhs myself. But i’ve just been messed about. I’ve got myself worked up because i have this diagnosis of epilepsy, no driving license and it’s affected my life so much and nobody can be arsed to get to the bottom of it!!
Ok i will try that, thanks blossom. I rang the mri dept and she said she would email the consultant to see if he could do it but she couldnt tell him his workload…i understand that i work in the nhs myself. But i’ve just been messed about. I’ve got myself worked up because i have this diagnosis of epilepsy, no driving license and it’s affected my life so much and nobody can be arsed to get to the bottom of it!!
Be assertive on phone tomorrow and let them know your not impressed with all this messing about. I’m keeping my fingers crossed for you…go for it girl. 
Thanks blossom. Well I’ve tried again this morning no joy. Tried GP receptionist and tried neuro secretary. No joy. Nobody cares. I’m going to go to the appointment anyway as I have waited so long. Do you think I should take a list of symptoms? I can never remember them if I don’t. This is what I have on my list: Extreme fatigue Right sided weakness and numbness Feeling of ants crawling Tingling and pins and needles Dexterity in right hand decreasing Blackouts/dizziness and one seizure Clumsiness and tripping Blurred vision/floaters. Poor short term memory Bladder incomplete emptyin and vowel issues Stiff back and legs mainly in a morning or after rest One ear keeps popping but not like on a plane can’t explain it And swallowing issues which is a new thing. I’m scared it will make me seem anxious. But I will never remember it. I also have a consistently raised ESR.
Thanks blossom. Well I’ve tried again this morning no joy. Tried GP receptionist and tried neuro secretary. No joy. Nobody cares. I’m going to go to the appointment anyway as I have waited so long. Do you think I should take a list of symptoms? I can never remember them if I don’t. This is what I have on my list: Extreme fatigue Right sided weakness and numbness Feeling of ants crawling Tingling and pins and needles Dexterity in right hand decreasing Blackouts/dizziness and one seizure Clumsiness and tripping Blurred vision/floaters. Poor short term memory Bladder incomplete emptyin and vowel issues Stiff back and legs mainly in a morning or after rest One ear keeps popping but not like on a plane can’t explain it And swallowing issues which is a new thing. I’m scared it will make me seem anxious. But I will never remember it. I also have a consistently raised ESR.
Yes!! Definitely take them. Hopefully Neuro will tell you he will be sending you another quick appointment, so journey is not wasted. They’ve increased your anxiety with all this messing about. THEY should be apologising to you. Just practice some deep breathing while waiting to go in…you will be fine
Thanks Blossom. That can’t all be in my head can it? I can’t do anything to cause those symptoms? Particularly not with having a consistently raised ESR? Don’t know if that is significant or not but they referred me to reheumatolagy a couple of years ago because of it along with back pain and stiffness but nothing was found xx
NO!! its not all in your head.
Your thinking like this because of all this messing about. When you go in there today, if I was you I would be quiet initially and just see what neuro has to say…hopefully if he’s a decent man he will apologise.
You have real neuro problems that need answers.
What time is your appointment?
Stay calm, don’t allow yourself to be rushed and ask all your questions. Remember!! this is your appoinment
xxx
Have you had a Lumbar puncture? just curious, with you metioning about the raised ESR xxx
Thank you. It’s because I have no answers after 2 and 1/2 years and I just feel like a pest. My neuro I’m seeing today is a woman, hopefully she is nice. I intially saw her reg who didn’t really pay much attention or explain anything to me, so hopefully she wil be better. I’m taking my hubby with me so hopefully he can prompt me if I miss anything. I could cope with everything else if it wasn’t for the tiredness. I sleep for hours every day that I can and just about cope with work. I have no other social life anymore. I’m worried about work, I’m a midwife and 13 hour shifts really take their toll on me. My appointment is 3. I’m in leeds and have heard good things so fingers crossed xx
Leeds is a good hospital…my husband goes to st James’s. We live in Bridlington though!!
I used to travel to Leeds to see Rheumatologist Dr Martin…lovely guy but retired now.
Its good that your taking your husband. I hope she is nice…don’t leave her office until your satisfied
I was diagnosed with ms last august…neuro at the time suggested primary progressive.
Went to see a specialist neuro in york begining of December…Dr Heald…lovely man. When I got there, he apologised and told due to blip in computer system, he couldn’t access my mri results on screen. I wasn’t happy but he was so apologetic, I forgave him lol
He did exam me though and went through my list I took. He also said previous neuro had sent him a very descriptive report.
I’m going back to see him a week on monday…so thats not too bad is it??
Let me know how you get on, I’ll keep fingers and toes crossed.
Are you able to reduce your hours at work? I was a staff nurse, retired in 2007 on health grounds…just claimed my nursing pension.
Take care xxx
I know St James’ well. Well i’m back from the neuro. Saw a lovely consultant who thought I was there because of black outs and seizures only so was surprised to hear of my other symptoms when I presented her with them. She said a 15 minute appointment wasn’t enough to examine me and she wouldn’t be doing her job properly.I did tell her registrar when i saw him in the summer about my symptoms but he obviously didn’t take any notice. She asked me what i thought it may be and i said i didn’t know but GP suggested MS. She then asked if i had done any reading, i said a little but didn’t want to scare myself. She said when a woman of my age presents with these symptoms she has two things in mind, MS or psychological. She is going to write to my GP for the scan results and a previous MRI done 2 1/2 years ago which showed only sinusitis. She thinks i have been having mild seizures but she is happy for me either way to keep on the meds or not, which i haven’t been taking the anti epileptic drugs which she knows about.
So…i’m nowhere near a diagnosis. I asked her also if psychological issues could affect sensation etc, she said possibly. I don’t feel depressed at all, initially 2 1/2 year ago they put me on anti depressants and the neuro then just discounted it as that. I am a stressed person…but not depressed. She suggested decreasing my hours or i could be on long term sick. So i see her for a double appointment now on the 13th march xx
I know St James’ well. Well i’m back from the neuro. Saw a lovely consultant who thought I was there because of black outs and seizures only so was surprised to hear of my other symptoms when I presented her with them. She said a 15 minute appointment wasn’t enough to examine me and she wouldn’t be doing her job properly.I did tell her registrar when i saw him in the summer about my symptoms but he obviously didn’t take any notice. She asked me what i thought it may be and i said i didn’t know but GP suggested MS. She then asked if i had done any reading, i said a little but didn’t want to scare myself. She said when a woman of my age presents with these symptoms she has two things in mind, MS or psychological. She is going to write to my GP for the scan results and a previous MRI done 2 1/2 years ago which showed only sinusitis. She thinks i have been having mild seizures but she is happy for me either way to keep on the meds or not, which i haven’t been taking the anti epileptic drugs which she knows about.
So…i’m nowhere near a diagnosis. I asked her also if psychological issues could affect sensation etc, she said possibly. I don’t feel depressed at all, initially 2 1/2 year ago they put me on anti depressants and the neuro then just discounted it as that. I am a stressed person…but not depressed. She suggested decreasing my hours or i could be on long term sick. So i see her for a double appointment now on the 13th march xx
Well I don’t know how you feel but it does sound to me like its gone well. Your neuro seems very good at her job and wants to have all the evidence before moving to the next stage. March will soon come round…I think you’ve got a good neuro.
How do you feel it went? her suggestings about work are something to seriously consider?
Noreen x
I feel frustrated. I cried. She was a good neuro. Said if it was MS I was in the right clinic. I know she needs to gather all the info but I had myself worked up for an answer. I guess I wil know more when MRI results go back to GP. If there normal it must all be in my head. If there not then it’s obviously something. I have a feeling she thinks psychological but my husband didn’t think she thought that, she said there are 2 options jumping out at her. How can anxiety cause floaters and visual disturbances, pins and needles etc? I just don’t get it xx
Did you ask her to explain what she meant about saying psychological issues could possibly effect sensation. Possibly!! says to me, she doesn’t know the answer…that wasn’t a yes.
You are upset and frustrated and that is understandable. Listen and believe what your husband is telling you…thats why he went isn’t it? she is not prejudging. She wants all the results so far, so she can treat you correctly. You have been messed about and you can complain about that if you wish to…I wouldn’t blame you. Communication between the professionals has been rubbish.
No, anxiety can’t cause the symptoms you have listed. Anxiety could aggravate your symptoms but thats normal for anyone.
If you had a known mental health problem then that would be an entirely different discussion…you haven’t so end of that discussion.
Your appointment is three weeks more than the expected six weeks, so not too bad and its a double appointment.
If you can afford, you could arrange to see her privately…it may get you a quicker appointment…just a thought.
Be confident, in that you know your own body and when something is wrong with it. I don’t know if you have children but I always knew when my children were not well…instinct told me. What does your instinct tell you about you?
Keep calm
Noreen x