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highlander
5 months ago

Hi @camilla_foster
I’ve got a few lesions on my spinal cord and my brain.
I haven’t suffered l’hemittes once.
So I’d have a guess that it’s not a full blown conclusion.
I might have it one day though who knows?


stumbler
5 months ago

@camilla_foster , l’Hermitte’s is one symptom of nerve demyelination, which can have various causes, including MS.

I’m sure there would be some form of statistics out there regarding the prevalence of this symptom. But, this is just one symptom and on it’s own is not conclusive of any condition.


camilla_foster
5 months ago

Thanks for the replies @highlander and @stumbler I think maybe what I mean to say is that I have had an intense case of lhermitte’s, which has lasted a good several month, is this a strong or definite reflection of something wrong in my spine (whether it be lesions or some sort of damaged) , could it be that I have a perfectly healthy spine? And am just randomly getting this without cause? Do people sometimes get this sign but are perfectly healthy? I have had a fair few other symptoms, but I am looking at this more so because of its prevelance in the setting of MS. Not yet diagnosed.


dominics
5 months ago

@camilla_foster L’hermittes sign was what led me down the path to being diagnosed! As far as I can remember it is indicative of an issue nearer the top of the spine.

The internet is amazing – http://bfy.tw/MUb3 😉

As ever, if in doubt, talk to your neuro or the nurses. Or your GP.


camilla_foster
5 months ago

Thanks for the reply @dominics… I am due an MRI in 2 weeks, I did describe my symptom, didn’t use the term lhermitte’s as I didn’t know it had a name until recently, but neuro didn’t seem to pick up on it, or either didn’t let on. I found a site that stated: ‘although lhermitte’s is not specific to MS, in a young patient it is strongly suggestive on the disease.’ Just wondering if this accurate I guess!?


dominics
5 months ago

Was feeling mischievous with the link. Apols.

It would appear that it is a classic indicator of MS – could also be other less likely things – and the Wikipedia entry is well referenced. The trick to assessing the reliability and veracity of the Internet is seeing whether the article is referenced correctly (have you ever had to do referencing of any style?).

The fact is that on the web anyone can stick up anything, and it can be total bollocks, however well-intentioned they may be.

Sticking to well known and trusted sources and checking for adequate referencing can help you feel more comfortable about the accuracy of things you read.

Best,

Dominic


highlander
5 months ago

@camilla_foster
None of us are doctors, we can only guess which is not what you need nor want to be fair on you and to us.
The best advice we can all give you is to see your gp.
I know it’s hard but we’ve all been where you are now.
Stop using DR Google.
Let the real doctors do their jobs they do get there eventually.
All the best


highlander
5 months ago

@camilla_foster
The place where your in at the moment has a name it’s called Limbo Land most of us have been there and WE ALL KNOW IT’S HORRIBLE!
I wish you good fortune.


camilla_foster
5 months ago

Thank you @highlander and @dominics you are both right, I wish there was more accurate data available! I do have lhermitte’s sign, and none of the other problems it’s associated with seem to fit with my other symptoms, despite possibly vit B12 deficiency. Then the neurologist suggested a functional problem, like FND, but that does not fit with lhermitte’s. I guess I’m not going to find the answer untill my MRI… Thank you for the support guys!!


dominics
5 months ago

Not just an MRI. Lumbar puncture too I’m afraid. MS diagnosis is a composite of things.


dominics
5 months ago

@highlander is spot on. It is horrible to be in the land of the unknown.

I read my GPs handwriting (in Windsor) upside down at the time and remembered the one thing I saw and looked it up in the medical library at Kettering General Hospital (I was there for work). There was no Internet or Dr Google back then. It hinted but was not clear. I just had to wait.

I know it is hard, but for the sake of your mental health you must try and stop trying to work things out ahead of time.

When people ask me about MS I have a stock answer now to illustrate the utter unpredictability. That is that it ranges from one episode once in your life to being dead in 6mo. Both of those are hugely unlikely but serve to illustrate how it differs from breaking a leg type thing.

Chill as best you can. The relationship with your neuro is key. You need to feel happy with the relationship and their approach, regardless of the message.

Best,

Dominic


lightning87
5 months ago

Hi
I had l’hermittes and I had a lesion on my upper spine. My l’hermittes has gone but did take around 6 months.
Not sure of data but certainly for me I had it due to an upper spinal lesion.
x


camilla_foster
5 months ago

Thanks for letting me know @lightning87 this is what I’m worried about :S And thanks @dominics you are right, I feel like I’ve done all the googleing I can now, probably had to get it out of my system! I’ll wait for my MRI and keep you posted! Is there a standard wait time untill they share the results, I would assume if something came up they would be fairly quick to contact? Sorry for all the questions!


highlander
5 months ago

Hi @camilla_foster
It took about a month for mine to get sorted out I think it boils down to how busy they are.


dominics
5 months ago

@camilla_foster – do you know what is worse than someone who bubbles over with questions?

Someone who doesn’t. Don’t apologise, completely normal. You’d be mad not to have them, and many more to come. It is the main point of Shift to me.

Please don’t say if you’re not comfortable, I understand.

The wait depends on many things.

Is it private?
Where was it done?
Did they do the right one – sounds silly, sometimes there is not perfect communication
Is it a good Radiology department?
Unless the MS team has someone specially trained in the interpretation of MRI vis-a-vis MS then a specialist neurology radiologist will be involved.

This means that they will have a procedure – a case conference type thing – where the neuro team meets say once a week or fortnight and goes through the cases they are dealing with. It may be monthly for all I know. The neuros may be having separate case reviews with the radiologists to then present the cases to the care team. It really is hospital/team dependant.

Calling the specialist MS Nurse team at your hospital and just ask them to walk you through the process and the timescales will likely give you the best answers.

The NHS is very ‘hurry up and wait’ at times!

In the meantime I’d be reading up on treatment options, inverting the pyramid, my new favourite blog (quite sciency at times, may be right up your strasse?) the BartsMS blog.

You never know, it might not be MS. Fingers crossed.

Best,

Dominic

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