Hello I’m new to this forum, I’ve had a number of on going problems ie fatigue, joint pain weakness, fuzzy feeling in my head ringing and tingling sensation numerous uti problems for a couple of years. I’ve had an mri and the report says multiple areas of abnormal increased signal in the cortical/juxtacortical and deep white matter bilaterally. I have been referred to neurologist and he did an exam took notes ie family health issues autoimmune diseases etc he had the report but no scan to look at as he had to request that from the hospital where the scan was done he say he will look at it and write to me with his findings. I have contacted secretary as 4 weeks have now passed she says he is on leave and is going to have a mtd meeting when he returns. 1st may. I don’t know what more I can do and I’m constantly thinking about the whole thing.
Hello Virgo
Welcome to the forum. I’m sorry you’ve had to find your way here.
What a pain, if a doctor tells you you’ll get written results, then you expect that to happen. And did you mean the MDT meeting is on 1st May? If so, then I presume you’ll have another wait, either for the promised letter, or an appointment.
What you could do in the meantime is write a letter to the neurologist, remind him that he was going to write to you with the MRI results, and explain just how worried you are with this long wait.
I understand that he’ll be on holiday so you’re not likely to get a quick answer to any letter before the MDT meeting. But you might find that it at least makes you feel that you’ve done all you can to speed things up. And it will make the neurologist aware of just how worried you are.
Best of luck.
Sue
Thanks for taking the tome to reply Sue, I’ve finally had a letter from consultant saying it’s not suggestive of demyelination/multiple sclerosis and has prescribed some medication for headaches??? I didn’t complain of headaches as such just that I had pulsate tinitus? He will see me again as arranged in clinic in 2 months. I feel like I’m in limbo as there is no explanation for my abnormal scan, Or a reason for why I feel so rubbish most of the time! I will update with any further developments. Thanks Virgo
Hi Virgo
You can have white matter changes by having migraines or if you have another autoimmune disease, which I do, my neurologist stated that it maybe from my thyroid or the migraines that I have had in the past, I haven’t had one for three and a half years he also said some of my medications could cause some of my problems.
He has though sent an appointment for April 2020 to have another look.
Your right to say your in limbo on here it’s called limboland, there’s not many things that you can do, at least you have an appointment in May not long now, you might find out what it maybe or that things need to be looked at more closely.
Good luck Kay