dont know what to think,i have same symptoms as most of you,struggling but just getting on the best i can
so i was sent for a mri,the reults came back and my doctor told me i had alot going on with my brain including 3 cysts,and i was put on the waiting list to be seen by a neurologist,i then wait 3 month to see neuro and he was was very dismissive and told me that my docs made a big fuss about nothing and that i dont have 3 cysts,just 3 white spots and theres nothing wrong with me,although wants me to have a lumber puncture
This has left me devastated,its took years to get this far as i havent been well for atleast 10 year
i’m so downhearted and its left me feeling some emotional,i have no family or friends to turn to and dont know what to do anymore
Hi Anon You’ve no support at home but will find plenty on here so whenever you feel like you need to vent here’s the place. Ten Years is a long time to still be in limbo , I know your Neuro seems dismissive but least Neuro is sending you for a lumber puncture. Your neuro was probably more miffed at your GPs poor interpretation of your MRI . You can be referred to a different Neuro maybe wait till you’ve had the lumber puncture if you are going ahead with it. I like you have been poorly a long time, it’s frustrating, disheartening and quite soul destroying at times. Whilst you are being referred for further investigation your Neuro is still keeping you ‘on the books’…and I know there is more waiting ahead …try keep positive if you can xxx Michelle x
You aren’t the only one in this kind of situation although i have lots of family around to support me and pick me up when i am feeling down. I had an MRI in May. It shows i have numerous white spots which the neurologist says are scarred areas in my brain and my spinal cord. I also have numerous areas of inflammation in my brain and spinal cord. He referred me for an emergency lumbar puncture. This showed i had antibodies in my spinal fluid which indicate MS. I have had loads of blood tests which also indicate MS. He is almost certain i have MS but is unable to give a definite diagnosis. He has referred me on to an MS specialist ( i have u friend who lost her husband due to complications caused by his MS, he was under the care of the specialist i am going to see, she says he is absolutely brilliant and couldn’t do enough for them). I am due to see specialist next week and fingers crossed he will officially diagnose and prescribe some medication to relieve my symptoms.
If your neurologist is unable to give you the help and support you need ask for a referrel to a MS specialist. You could also phone the MS hotline and speak to one of the nurses, they are brilliant .
Hope this helps
Max