Area in thoracic spinal cord?

[zoefromsussex]

Hi, I have just received my latest mri results and whilst I have no new lesions on my brain the neuro says there is an area in the thoracic spinal cord that may represent some inflammation & may explain some of my recent symptoms.

Does this mean I have a lesion on my spine? I didn't have any lesions on my spine before. They were just on my brain.

Could this refer to more than one lesion & also, does this suggest it was an active lesion at the time of my mri?

Thanks, Zoe

[zoefromsussex]

Thanks Kyle, my thinking has been to see how I go over time with regard to a dmd. I'm thinking one area on my spinal cord in over two years is not bad going. Don't get me wrong, symptoms are fairly regular & annoying but I had a long conversation with this latest neuro about treatments and I think she 'got' what I was trying to say but she said she'd like me to discuss Tysabri with my usual neuro. I'm happy to do that and if I had to choose a drug that would be my choice.

[kwarendorf]

There is no right or wrong here. We each have to decide what's best for ourselves. Choosing whether or not to take a DMD is a very personal  decision.

If you choose not to go the DMD route, knowledge of new lesions is a little bit like finding out you have the defective Huntington's gene. There is nothing anyone can do for you. Symptoms can be treated in both cases, but they can be treated absent the knowledge gained from new MRI's or the predictive genetic test.

Kyle

[zoefromsussex]

Thanks for your advice.

I'm going to phone her secretary tomorrow. I thought about going to my gp but there's no real point since he only gets a copy of the same letter!

My gut feeling is that she means a lesion and to be honest that would be a relief to me since every time I get any kind of relapse I end up thinking I'm imagining things.

I decided quite a while ago that I don't want a dmd (vaarious reasons) so I sometimes wonder if I'm wasting these doctors time even by having the scans done. My logic being that I was diagnosed late 2011/early 2012 and yet this is the only change on my mri.

I know I'm going to get a lot of advice to the contrary but I feel it's best to be honest!

[doublevision1]

I agree with immisceo that its a good idea to get your hands on all of your medical records including your radiology reports and MRI pictures. I know that I understand my own situation much better with all of this information than if I didn't have access to it.

Is it possible for you to have a conversation with this latest neuro who wrote you the letter. She should be able to answer your questions and provide clarification. My sense is that many patients do not ask for a lot of detail as they don't know to ask or perhaps they don't want to hear the answers, and so docs adjust the message accordingly. The reason I think this is because nearly every doc I've seen, both GP and specialist, has said that I ask more questions than most patients, whereas I usually after the fact I  end up thinking I didn't ask enough. :)

Re: spinal lesion, yes I've also been told it's more difficult to get decent images of this part of the CNS. My MRIs have never shown lesions on my thoracic spinal cord, which like you I usually have done along with brain and c-spine. However my neuro tells me I have one there due to my description of the MS hug.

Is there any way you can be seen sooner. You say you don't expect to see a neuro again until the end of the year, which is almost a year away. Yet this latest neuro thinks you should be on a DMD and is recommending Tysabri. The timing of your treatment should be based on your medical need, not on your neuro's availability. Someone else should be seeing you if your regular neuro cannot. If it were me, I'd be pushing, politely but very firmly, for a follow up appt sooner than later. I think they must count on patients being passive and not thinking they can influence the process. I realize we're in different health care systems, but I have seen this dynamic for myself here in Canada. Personally I have always had success pushing back on decisions and schedule issues when I did not agree.

[zoefromsussex]

I've only ever seen one neuro more than once! I was only dx a couple of years ago but have been through six different hospitals so far! I chose my current neuro on the basis that he's soooo good but it's not much use if I can't actually see him!

What happens is the neuro reads the radiologists report and then she writes to me to tell me what was said. I remember seeing my very first mri report & that didn't specify 'lesions' either. It referred to 'multiple areas/spots' if I remember correctly! I only ever heard the word lesion when I was diagnosed and they told me my lesion load was modest and only on my brain.

I had an episode not long before this latest mri where I experienced the hug and strange sensations whilst walking (along with old stuff such as vertigo & wosening of vision) and I just read that a lesion on the thoracic cord would fit with the hug.

I have no idea when my neuro will be back; I'm guessing it'll be towards the end of the year before I see him!

[immisceo]

Your welcome. I'm glad you're at a good facility. Sorry you're getting a bit of the neurologist shuffle with the long-term leave, etc. I know I'd feel a bit adrift if the doctor I've dealt with this whole time finally retired (he's semi-retired now, so I think about this!). I have heard that spinal lesions are a bit trickier, alright.

Just FYI, under EU-wide data protection legislation, you absolutely *do* have the right to see ALL your records. Not just see them, but have copies of them (you mentioned not seeing your radiologist report). http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68

You may have to go through a formal information request procedure, but I certainly have all of my records and reports and all of my MRIs on disc. It sometimes requires copies of ID, etc. but I think it's worth the effort. It's my statutory right, and I like to be as informed as possible in order to make an informed decision (with the professionals) about my care.

[kwarendorf]

"neuro says there is an area in the thoracic spinal cord that may represent some inflammation"

This language would be understandable if it were coming from a radiologist. They aren't diagnosticians. I'd want a little more commitment from a neuro. Is it a lesion or isn't it?

As to enhancing or not, it may be a moot point. new lesions will enhance for about 30 days. After that they show up as "old" lesions. If a new lesion occurs 2 months after you last MRI and 4 months before your next MRI it will not enhance, but relatively speaking it's new. If the lesion on your spine was not there on your last MRI it seems to me that it would rate as a new lesion, even if it didn't enhance.

When does your usual neuro come back?

Kyle

[zoefromsussex]

Oh the other thing I should mention is that she was specifically looking for lesions somewhere on my spine as she said the ms hug & other issues I've had would fit with something on the spine and she said lesions on the spine are notoriously hard to spot (apparently) So if this is a lesion I guess I was lucky they even saw it! So basically I have a 'modest' number of brain lesions but so far my main trouble spot has been my optic nerve with lots of sensory symptoms.

Thanks for your response by the way! :-D

[zoefromsussex]

This was in the letter to me from the neuro; I never get to see the actual radiologists report (I think that's standard in the UK)

My usual neuro is on long term sick leave so I saw a different consultant but she says she's referring me back to the usual one (once he's back!) to discuss my treatment. I'm not currently on a drug but she wants me to discuss Tysabri with my own neuro.

When I have my annual mri they scan my brain, neck & full spine so yes, this is normal for me but I'm lucky enough to be treated at the best place in the south east.

I won't know whether it enhanced with the gadolium or not since they don't seem to discuss that info with the patient. They tend to just say whether or not anything had changed on the mri.

She's also copied the lette to my ms nurse and said to contact her if my symptoms bother me.

[immisceo]

Your neuro said this, or the radiologist on the report? Do you have an appointment scheduled with your neurologist to go over these results?

It may be that the imaging was a bit inconclusive, so no one is wanting to be too definitive. I would just make sure to speak to your treating doctor. Is it normal for you to have your spine below your neck imaged? This isn't, generally speaking, the average protocol for most MS MRIs as (notionally) the likelihood for lesions diminishes the further down the spine you go—though of course they can happen anywhere in the central nervous system.

Definitely get the details from the horses mouth. They will be able to tell you if it was something that enhanced with the GAD or not (indicating an active lesion), etc. Hope you get your answers soon.