Hi there - Great forum I have spent some time on the diagnosis section.
I’m just interested to know whether it is possible to rule out MS with any particular test/results?
I had an MRI scan (Brain and Neck) 3 years ago and was told there is no evidence, and just to see how I go. Well symptoms slowly got worse and I’m back.
A poor score from a Nerve conduction study prompted a CT scan and Lumbar puncture and they have written to me about the results. They are waiting for the ‘Oligoclonal band’ result to come back and this seems an MS linked test…Is this important for MS diagnosis as the lumbar puncture has been classed as normal?
My dad has MS and I’ve grown up watching him deteriorate and I’m keen to try and find out.
MS is incredibly hard to get diagnosed. Regardless of what the doctors will tell you, having negative MRI’s don’t mean a thing, although they do need to find lesions in order to positively diagnose MS. Various tests can rule out other things, but they generally can’t rule out MS because it’s just so weird. CT scans are useless for MS, although they could identify a problem that is causing similar symptoms.
Don’t quote me on this, but if the oligoclonal bands were found through your spinal tap but aren’t in your bloodstream, then it could be MS.
I had clear MRI’s for years and even passed a nerve conduction test while I was in the midst of my worst exacerbation. Are they going to do a new MRI?
i WOULD say as a guess they did the CT scan to check for other things after the nerve conduction study. they use nerve conduction i am assuming your talking about the one where they put electrodes on your legs etc, and not a VEP? They are looking for causes of Peripheal nueropathy.
See now i did a google out of curiosity as i have never had the traditional nerve conduction study i.e. electrodes on legs, but i failed two Visual evoke potential tests which proved nerve damage to optical nerve etc classic of MS.
Lumbur puncture is slowly being phases out as far as i can see for the diagnosis of MS it is intrusive and can just muddy the waters if the they find inflammation alongside in your blood test (which happened to me) as my neuro said he isnt using it anymore as the results are not perfect.
You really need an MRI scan in my humble opinion. I didnt think they used CT scan for MS, although i could be wrong.
Also because your father had MS doesnt necessarily mean you will have it, but you could be more predisposed of auto immune disease. LP is used to rule out other diseases other then MS. it doesnt diagnose MS.
I hope you get your results soon waiting is hard work, but MS is usually diagnosed after some years and a pattern being formed which a neurologist can see.
To add to CCs link, here is a link to the MS Trusts webpage on the McDonald Criteria. This is the standard by which MS may be diagnosed.
So if you read about the various tests and their use with CC link, you can then see what the results might mean.
Definitely the best evidence for an MS diagnosis is MRI scan. Comparing the scan you had previously with a new one would tell the neurologist a lot about what is going on in your nervous system.
Further to your worry about your fathers MS and CCs comments, have a look at Risk of developing MS | MS Trust It might ease your mind a bit.
Yes the failed nerve conduction study (electrodes on hands and feet) was the catalyst for my CT and Lumbar puncture. Neurology said ‘we cannot leave this’
The follow up letter said you have evidence of ‘diffuse mixed axonal and demyelinating polyneuropathy’ which my GP said suggests MS to him.
I think the CT scan was used to rule out tumors etc… that is creating my symptoms and it has. Which appears to have left MS as a potential diagnosis. The lumbar puncture has also come back normal apart from the oligoclonal band result not being back yet… so again I presume MS isnt ruled out. Hence my original question. Everything is getting ruled out but you cannot rule MS out?
I have just replied that Neurology think it might be because I’m vitamin B deficient but my GP thinks this is a red herring. I asked him why and he said you were 101 and low is considered 30 to 80. I’m going for injections all the same and really hope it is this, but my GP comments just add to my worries of me following my fathers life.
The suggestion is I’m vitamin B deficient by Neurology, but my GP said he thinks this is a red herring. I am going to chase the oligoclonal band result with Neurology and ask them ‘Do they think this is MS?’
My symptoms are ‘only’ numbness, but this is throughout 1/3rd of my body and continuing to spread with the intensity increasing particularly in my hands and feet. I do feel tired at times but this is hard to know whether its being ill or not. I constantly question my balance and this does effects me mentally. I’ve had my eyes tested and I dont require glasses and no optic neuritis found.
In the UK it is unusual to have a CT scan to rule out things when they see possible evidence of MS. I find it a bit confusing. the LP is used to rule out MS not diagnose MS.
Obviously to me i would think they are just not convinced you have MS but have something which is not right so need to find out what that is.
If that makes sense.
My daughter is low B12 is more tired then anything else, my father was low B12 with lupus.
Its obvious something is going on but if it was MS I would think an MRI and LP would be enough for now rather then put you through costly tests.
Maybe i am wrong but in all the time i have had it never heard of anyone being given a CT scan to rule out MS. I think they have something in mind and you will find out soon enough with the Result of LP. Normally you dont get told until the lab results are back. Like i said my LP showed high OBands but inflammation in the blood test not matching or whatever they call it.
so negative for MS.
At least you know you dont have tumours which is a relief in itself.
It seems to me your GP is winding you up. If neurology thought you had MS they would have said it was a LETS SEE how it goes, not suddenly just switch to low Vitimin B12 deficency. IMHO.
See i am confused. You replied that your neurologist thinks it is down to low B12 your pins and needles, and now you say there was evidence of diffuse mixed axonal demyelinating polyneuropathy. WHICH YOUR GP SAID SUGGESTS MS TO HIM.
The GP has no right to say that to you, he is not an expert and is winding you up.
I have a friend with CIDP and they had this result on their tests. It came on suddenly over 2 to 3 months. she was tested also for GUILLIAN BARR AND THAT TOOTH disease cant remember the full name lol as they mimic it, and finally was given diagnosis of CIDP.
Really i think your GP needs to mind their own business and let your neurologist deal with this. whatever it is will soon show itself, but its unfair for you to be constantly undermind by your neurologist because of your GP. This is just my humble opinion for what it is worth.
xx
I’ve just seen your post again, whizzed through the replies, including my own and realised I forgot to actually include the link to the McDonald Criteria! So here it is: McDonald criteria | MS Trust
CC is quite right that it’s not your GPs job to scare you silly with their view of whether it’s MS or not. Only a neurologist can diagnose, or in fact rule out, MS.
Hopefully you’ll soon get the LP results (in my opinion often the LP is a clincher for MS - this is the reason the oligoclonal bands result is needed) and a new MRI to compare with the old.
After the NCS results they said I have evidence of diffuse mixed axonal demyelinating polyneuropathy…then after this I had my CT and LP. Now its moved to Vitamin B deficiency and with my reading being 101 but 30 to 80 is classed as low. But I will get my injections arranged all the same.
I’m going to chase Neurology this week for my bands result and hopefully I will get to speak to someone. So the LP could rule out MS? Just picking up on Ssssue’s comments as this was my original question?
Regarding my GP, I guess it was a bit of me quizzing him on what he thought about it as I’m keen to get to the bottom of this…if possible. But overall on reflection I agree with what you have commented on.
The LP can be used as a tool to diagnose MS together with MRI and other tests (especially Visual Evoked Potentials / VEP and neurological examination).
But cannot be used alone to diagnose MS. And a negative LP cannot rule MS out. Many people have negative LP results but are diagnosed with MS based on MRI.
Lumbar Puncture when used as a diagnostic tool for MS looks for the presence of Oligoclonal bands in the CSF (cerebrospinal fluid) and is compared with blood taken at the same time. If there is a mismatch (O bands in CSF but not blood serum) that can be taken as an indicator of possible MS.
MS is often not easy to rule out (or in!) As I understand it, the combination of clinical presentation and lab tests and scans add together to give support to a diagnosis or to conclude that this or that is unlikely.
I am sorry that you are having such a worrying time. It sounds as though your medical advisors are keeping a very watchful eye on you, which is good, and I hope that you get a bit more clarity soon - preferably of the reassuring sort.