Long time for brain scan report

New diagnosis and before diagnosis
1

Hi, I have not been diagnosed with MS but have many symptoms.

Im concerned about a head scan I had 3 months ago and not got results from!

My story in brief; In August I suffered my 2nd “trapped nerve” in neck which started off a whole host of symptoms, desensitisation in left forefingers, left foot and shin, constant buzzing in left foot and feeling like I’m being dragged to the left when I walk. Electric shock pains in left arm/hand and leg… not to mention bladder problems, fatigue and blurry vision.

My doctor sent me to A&E after I told him I wet myself and had lower back pain this was my first MRI scan showed up a bit of demyelination in upper Thoracic spine which led to me seeing a neurologist, she briefly went through visual and physical tests on me and arranged for a whole list of blood tests… it was the height of summer so all my symptom where coming at once!

Since that appointment I’ve had no contact with Nero but I can now identify my symptoms as worsening with heat, stress and when I’m pre-menstral

3 months ago I had a MRI with contrast on my thoracic spine and head, I’ve been patiently waiting for the report with no follow up appointment. I’ve had reports back for blood tests - all clear.

After waiting 11 weeks I phone the Nero secretary to ask about results - she said they went to my Doctors.

The doctors only have the report from the thoracic spine (no changes occurred) but she questioned if I even had the brain scan!!

I called the second time to the Neros secretary and she said it was here and been discussed in a meeting yesterday, this was over a week ago and I have all not heard anything, I’ve left several messages on her voicemail with no call back.

I’m worried they have lost my scan as I don’t understand why the spine has been reported but not the head, is this normal practice? Have they found something and need to look further but not telling me?

Im so frustrated and confused

2

ask your gp to enquire as well.

sometimes a medic gets better replies.

3

Hi Vix

You will learn that time is experienced differently for medical professionals and patients. Though why we are called patients I don’t know. You want (need) answers as soon as dam possible.

The doctors have a tendency to see an MRI scan, stare at it for a while, polish their glasses, scratch their beard (or the equivalent for a woman), discuss you and your scan at their MDT (multi disciplinary team meeting), head back to their desk, think a bit more, write a letter to your GP (usually copied to you) and send the letter to their secretary. Usually this will say written on 4th January, typed 28th February (or equivalent) and at the bottom ‘checked but sent unsigned for speed’!!!

Honestly, it’s probably nothing that you should be especially scared about. You already know that an MS diagnosis is at least ‘possible’, the letter may confirm that, or may not. It’s also just as likely that the neurologist will want to wait for a definitive diagnosis.

Try phoning the secretary again next week. Be sweet and nice, explain how worried you are (ask her name and write it down so you can use it if you have to phone back) and see if you can get the letter sent ASAP.

Best of luck.

Sue

4

Thanks Sue, I hope that is the case xx

5

I’m going to call doctors tomorrow, I’ve had a awful few days and feel the need to wake them up a bit to how I’m feeling!!

6

I know the feeling I had my scans done on the 30th December and I’ve had no results but had a another letter for another scan I am wondering this means that they have found something and want it with contrast this time. I rang the doctors with no luck xx

7

Don’t get too worried Stacey, it could be that they didn’t see anything and so want a repeat scan with contrast dye.

The contrast helps them to see areas that are harder to see, in particular it shows up areas of current inflammation.

What happens during a contrast MRI is that before they begin a nurse will put a cannula in your arm. They then do a number of scans before pulling you out, injecting the dye into the cannula, then pushing you back in for a shorter time. Once it’s all finished, they remove the cannula.

So the chances are, the doctor expected to see something but didn’t. Rather than the reverse.

Try not to worry. Hopefully it will be soon, and then you’ll get some results.

Sue

8

Thanks sue it’s the knowing is the worse part x

9

Ive read quite a few of the posts on here and can relate to many of them. My history is 3 episodes of lack of vision which returned after about 30 minutes. Saw GP after the second who said I was to attend A&E if it happened again. So 3rd time in A&E straight through to CT Scan. Lesion seen on brain so 1 hour later in MRI scanner. Demylination and ischaemic lesions seen. Immediately started on Clopidogrel and statins. Saw neurologist following week who said wanted to rule out MS. Had LP and another MRI this time brain and spine. LP and spine both clear but brain no change. So could be MS but in remission hence clear LP. Seeing neurologist again next week then another MRI in 2 months. Dont over think the symptoms he said! So do i really have pins and needles every morning. Can I really not remember the word for ‘tea towel’ and have to describe it as the thing you use to dry the dishes! Do I really stumble to the right often and have bruises all over my right legI!! m almost 56 otherwise fit and healthy. Cant help but ‘think’ I have symptoms

10

Hi Nettyannt,

I can so relate to your post so much.

Im 47 and at the beginning of what I expect to be a long journey. Before Christmas I went to the Docs with a numb sensation all down my arm, Docs suspected a trapped nerve as I had injured that arm and sent me for a cervical MRI, rang me to go in for the results which unnerved me and I have an area of inflammation on my spinal column and MS has been mentioned. Seen a Neurosurgeon? the week after, balance and reflex fine but wants me to see a Neurologist for further tests.

Since all this I have been lightheaded, dizzy, feel like Im walking on marshmellows, constant tingling in my legs, cant think straight, couldnt remember if my hubby had egg with his favourite tea, that upset me as how could I forget that?? Am I overthinking, gosh yes!! Am I stressed, yes, anxious, yes! Im worried sick but trying my hardest to be rational about it all and trying to convince myself all these symptoms I dont remember having before are down to anxiety and worry.

Really hope everything is ok with you

Take care x

11

Hello Nettyannt

A clear LP isn’t because you are in remission, a clear LP will always be clear. What the neurologist is looking for on an LP with regard to MS is ‘Oligoclonal bands’ in the cerebrospinal fluid, that are not in the blood (taken at the same time). About 80 to 95% of people with MS have Oligoclonal bands in their CSF. So while a negative LP doesn’t mean it’s not MS, it means it’s slightly less likely.

And if there were no other lesions following the first brain scan, it could be that these are not going to cause you any further problems.

So, the ‘watch and wait’ advice, trying your best not to worry is really the best way forward.

Good luck trying not to worry and overthink the issues. Bloody hard to do I know.

Sue