conflicting mri/neurologist letter...thoughts pls??

New diagnosis and before diagnosis
1

Hi there

Just a brief history… following numbness in face(which i still have) and a couple of incidents where i had limited movement/numbness in my arm and leg i was referred to a neurologist. Neurologist examination showed clonus in both ankles and unsteady gait.

After almost 5 weeks of waiting for results of mri (my letter has never arrived) i decided on the off chance to ask if my dr had got the mri results (they had) my results of vit d had also come back as low and again i hadnt been informed.

findings of mri

2 non- specific foci of t2 hyperintensity in the periventricular deep white matter, these could reflect areas of demyelination.

signal change in the left maxilla , odontogenic in nature?

letter from neurologist

I am glad inform you that the described lesions are non -specific. They are no way suggestive of possible multiple sclerosis and they do not meet the criteria for the diagnosis of ms. I can at present reassure you that your symptoms and mri findings are no way associated with the possibility of you having ms. I would however advise you continue observing your symptoms and should there be any further progression of your symptoms to report to gp who will then make a decision about whether to further refer to neurology. I would advise that you see your dentist because of the changes of your left maxillo which need to be investigated and treated as necessary.

To be honest i feel like crying it has been such a anxious wait and i now feel like i have more questions then answers, the mri report states “these could be areas of demyelination” yet the neurologists letter seems certain beyond any possibility that it isnt ms.

My gp was excellent and is going to seek advise from the neurology department, but it is my understanding that lesions in this area are common with ms and coupled with the fact that i have neurological symptoms (clonus and unsteady gait)plus my own symptoms eg numbness and heaviness in limbs plus cognitive problems i cant help but still feel concerned …

Sorry if am rambling, i guess i am just looking for some clarification as to what this all means (could it be that the lesions are so new that at this moment in time they are not clearly defined and able to say they are defiantly ms related?)

At this moment in time i shall await to see what my gp says after she has spoken with neurology but i am also wondering depending on the outcome should i be seeking a 2nd opinion and perhaps asking for a mri with contrast/spinal mri (due to issues with arms/legs) (would this make much difference at this moment in time?) or just wait and see if i do have any further symptoms? I would add that since initial mri i have very slight numbness in both hands and have also been having the odd spasm (but these have been so slight i doubt they would make any difference in a mri i think i just ultra aware of my body right now) rambling again lol… sorry

I would welcome anyones thoughts as to the findings of my mri/letter from neurologist? , or whether you guys have had similar? and whether i should be asking for more tests at this stage/2nd opinion etc?

Best wishes to you all

Vanessa

2

TBH, I would wait and see. If there’s more trouble heading your way, it will find you soon enough. If there isn’t, well hurrah for that.

Your case is documented, you have the neurologist’s reassurance that there’s nothing looking too sinister and also an invitation to take further action if something changes. That sounds to me like a good place to leave things for now and, with luck, for ever.

Time is the best diagnostician, as they say, and the best healer also. I hope that it will confirm to you - if you give it a chance to - that all is well. If it doesn’t, well, you know that the moment has come to investigate further. One step at a time, I think.

Good luck.

Alison

2 Likes
3

I would feel the same as you. He has detected clonus in both ankles so what does he think is causing that. If not MS then what? Have you has MRI of the spinal cord as I think lesions there can cause clonus and exaggerated reflexes. My brain MRI was clear but the cervical MRI was not. Still not got a dx yet limbo now since 2011!

Moyna x

4

How worrying for you. Hope this gets sorted asap

kat x

1 Like
5

p.s it does sound like they have decided it isn’t sinister so I would take it as a positive. Right now you will be hypervigilant with your body, so anything symptom may seem like ms.

6

Thanks ALison Moyna and Kat for your replies :slight_smile:

My gp said she’s going to contact neurology and ask for some clarification in relation to the the mri findings.

Over the weekend I have had time to take in your comments and also had time to think of some further questions I have dropped a letter off today to my gp and asked her if neurology can expand further on the mentioning of demyelination and whether in light of the fact clonus has been detected plus some of my issues have involved me being unable to use my arm and leg whether a spinal mri would be beneficial? (Moyna I have not yet had a mri of spine, I am so sorry you have been in limbo for so long I can not begin to imagine the frustration) And finally if they are certain it’s not ms then what are these lesions I don’t feel they can be age related as I have just turned 43… I seem to be wavering from wanting to press forward in the hope I may get answers sooner and at the same time leaving things as they are and hoping this all goes away…I guess I will wait to see what my go comes back with and go from there.

Once again thanks for your replies and wishing you good luck with your journeys

Thanks

Vanessa xx

1 Like
7

Hi Vanessa, I would be frustrated too if the neurologist gave such a certain reply. Maybe he is trying to be reassuring but he should explain all the observations not just one! And he should explain his reasoning. You try to forget it but how can you when your body is doing random things and you have no idea why.

I would chase it up because if you did get more symptoms in the future you wouldnt be able to see the neuro straight away and its good to know as much as possible.

The neurologist I saw was very good and he gave his theories about my symptoms and neuro exam even before the MRI and that reassured me greatly.

Best of luck xxx

Qoseen