Hello everyone, lovely to meet such a well informed group of people.
I’m hoping someone can throw some light on my MRI scan please.
Scan report -There is indeed a reasonably well defined slightly expansile oval plaque in the thoracic cord level of T5 measuring 15 x 4mm. This is only perceived in the T2 sequences and is confirmed on the axial acquisitions to centrally and slightly to the right side of the cord.
There are a few more comments with a recommendation of an urgent neurology consult.
My Apt has come through in less than 2 weeks with an MS specialist. I do also have plenty of MS symptoms so would be more surprised if not diagnosed with MS.
Many thanks for any help.
Hi
what symptoms and have you had any neuro exams etc
your t lesion should suggest lower limb issues from what I’ve read
Hi Kris,
Symptoms are are :-
overwhelming fatigue, prickle like feeling in hands and other body parts including feet just lately. Muffled hearing, eyes have gone a bit odd! and very painful. Constipation and also needing to wee frequently, slurred speech and jumbled words intermittently. There are more but can’t think of them at the moment. I do have a collection of other auto immune conditions for my sins. All these symptoms have crept on over the years the fatigue being with me for many years and getting worse esp under stress. Memory is awful as well (brain fog)
My first neuro apt is on Tuesday. The MRI was ordered by my GP firstly of my head which was done without contrast and just showed a white spot indicative of a head injury, so he sent me back for neck and lower back again no contrast, the Radiologist called me back for more scans with contrast which showed up the problem, hence the urgent referral to a neurologist.
Had my neurology apt! It went as follows
Neuro…Why have you come to see me?
Me…I assume it was due to the MRI report you were sent.
Neuro… I don’t appear to have it.
Me… fine I will go home again after a 90 mile round trip.
Neuro then decides to look on his computer screen for the scans orders a load of tests with the comment that the scans look highly suspicious, then said see you in a year!
As far as I was concerned a complete and utter waste of time and energy that I do not have.
omg is that it! I don’t think that is acceptable. Hanging for a year? Did he not elaborate at all? Katx
Don’t get your hopes up for an early diagnosis.
A single lesion (if that’s what you have) doesn’t meet the criteria for an MS diagnosis, and even if the abnormal area in your brain was accepted as also being a demyelinating lesion it usually still wouldn’t be sufficient for an MS diagnosis.
Next, they’d have to prove it couldn’t have been a one-off (because of the “multiple” aspect of MS), which normally means either waiting to see if new symptoms develop, OR waiting a fixed period (usually six months) and scanning again to see if new lesions have appeared - with or without new symptoms. Only once it’s confirmed it’s definitely either recurring or ongoing is an MS diagnosis made.
Some people have a single MS-like attack, which does not recur. In that case, it just lies on file in case anything else should happen, but is not diagnosed as MS.
Such an attack increases the risk of eventually developing MS, but it’s not a 100% conversion rate. Some people recover and have no more trouble, and it stays unknown why they ever had an attack in the first place.
Tina
Thanks for your replies,
I have had a lot of MS symptoms for many years, so must admit to expecting a bit more info. I also have type 1 diabetes and as I understand it the auto immune gene is almost identical for type 1 diabetes and MS.
There is no single gene for Multiple Sclerosis, or (that I know of) type 1 diabetes.
At least 60 genes have so far been discovered that influence lifetime risk of MS, but even having all of them does not mean someone will certainly get it. That’s why it’s not considered a hereditary disease - there’s no single gene that always causes it, and can be passed on.
As I understand it, people with MS are slightly more likely to have type 1 diabetes, and vice versa, and they are more common in the same families, indicating there may be shared genetic risk factors. But already having type 1 diabetes is not used to inform an MS diagnosis in any way. The overlap is not significant enough to say that if you have one, it’s a deciding factor in whether you also have the other. The diagnostic criteria for MS don’t look at other diseases you have at all (unless there is a possibility they could be causing your symptoms, in which case they have to be ruled out). The relationship is nothing like as straightforward as having one making it “obvious” you have the other. It’s just a slightly increased risk factor, that’s all.
I could be wrong, and you are in fact diagnosed very quickly (but not on the basis of the diabetes). Some people get a very fast diagnosis. However, I wanted you to be aware it’s the exception, not the rule. For most people, diagnosis is quite a long-drawn out process, and even “textbook” MRI findings are not usually enough by themselves. It must be proved they couldn’t be the result of a single incident. The technical term is “dissemination in time” if you want to explore it in more depth on Google. Together, the MS diagnostic criteria are called the Macdonald Criteria. I hope I’ve spelt that right - I can never remember if it’s Mc or Mac, but I think it’s Mac (50-50 chance).
Tina
Well he did say it was highly probable that I did have MS but he couldn’t diagnose it just like that and wanted all these extra tests done, mind you it would take a year to do all the tests the was the NHS moves lol. Seems daft that I was given an emergency apt to see him yet all then grinds to a halt.
[quote=“Anitra”]
There is no single gene for Multiple Sclerosis, or (that I know of) type 1 diabetes.
At least 60 genes have so far been discovered that influence lifetime risk of MS, but even having all of them does not mean someone will certainly get it. That’s why it’s not considered a hereditary disease - there’s no single gene that always causes it, and can be passed on. [/quote]
This is a link that was forwarded to me regarding the close link Researchers Determine That MS And Diabetes Are Closely Linked Diseases | ScienceDaily
I’m aware there is a link - also probably with Crohn’s, non-Hodgkin’s lymphoma, and a couple of other things.
However, none of them are caused by a single gene, there isn’t a genetic test for them, and it’s not something that is taken into account when reaching a diagnosis.
Even having a close blood relative with MS isn’t used for diagnosis. It certainly might fuel the suspicion that similar symptoms were indeed the result of MS, but it plays no part in the actual diagnostic criteria. About 1 in 5 people with MS have another MSer in the family, but 4 in 5 don’t, so the correlation isn’t strong enough to say: “If your sister has MS, and you have similar symptoms, then you too have MS.” Each case has to be diagnosed on its own merits. Which diseases the patient or other members of their family already have is circumstantial, at best. It can neither prove nor disprove MS.
Tina