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No lumbar puncture, no support

Hi. I’m new to the MS Society and forum. I thought I had a confirmed diagnosis after my MRI tests (Two of them, head, neck and spine showed several lesions). The initial assessment based on my MRI results and ongoing symptoms found that I had MS. I was told that I might need to have a lumbar puncture but decided against it as I am a single mum with no one to look after my daughter. I would not be able to lie down for 24 hours after. Because of this my neurologist wrote to me and said that he could not make a confirmed diagnosis. I feel as though I’ve been dropped like a hot potato. I may as well have been declared fit and healthy despite the fact I am not and suffer symptoms every day.

I am now really struggling, particularly as a single parent. I have no support, no medication, no advise. I feel pretty roughly treated to be honest. Really shocked…

I’ve made an appointment with my GP to see if I can request a different neurologist who is more sympathetic to my situation. I don’t know if this is possible. Or whether a diagnosis could be made, confirmation or even recognition that I have some neurological problem?

Any advise appreciated. Thank you.

Rebecca x

Rebecca,

Your treatment sounds pretty poor to me. Your GP is there to help you. They should be able you to find a neurologist who you can be confident with. Don’t be afraid to make a fuss. Make enough noise and someone should listen

It can be expensive to self refer privately but if you get the right help it might be worth thinking about .

If you can get your GP to be your advocate it can help.

Good luck Mick

Take a look at the LP guide from Barts & London, because there is no reference to having to lie flat for 24 hours and only mentions 1 hour before returning to usual activities. Best to insist on a atraumatic spinal needle though.

http://www.clinicspeak.com/lumbar-puncture/#0/0

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Hi Rebecca,

I also declined a LP, but went on to be diagnosed no problem (well, being diagnosed is a problem, but I’m sure you get what I mean).

I do believe declining the LP delayed the diagnosis by a few months, as they had to be a little bit more sure about the other evidence, which was essentially MRI, as my VEPs were normal. Then again, it’s impossible to say, as I could have had a normal LP, which wouldn’t have helped diagnosis at all.

Either way, it’s absolutely NOT impossible or forbidden to diagnose without an LP. I’m proof - others here are proof. In fact, the NICE guidelines suggest it should only be necessary if the other evidence is ambiguous. I had nice, clear MRI evidence of MS lesions in both brain and spinal cord, and evidence of dissemination in time (more than one episode), because they did two scans six months apart, and were able to prove I had new lesions - that’s sufficient to prove it’s an ongoing thing, and not an isolated incident.

It’s possible that your neuro is just not explaining himself very well (not all of them do!) and doesn’t mean he can NEVER diagnose you without a LP, but just that he will need to await further evidence - as was the case with me.

My neuro did point out that an MS diagnosis is never 100% certain, with or without a lumbar puncture (the only certain diagnosis is post mortem, which is not a lot of use, except to researchers).

However, he was certain enough to keep my insurers happy. I did think there was a chance they’d contest the diagnosis, and demand an LP, but they paid up without a whimper, so I don’t think there’s any serious room for doubt about my diagnosis. You can bet if there was, they would have seized on it.

Tina

x

Rebbeca

I had an LP which was normal, but still got a confirmed diagnosis, this was made on repeat MRIs of head and full spine which showed progression, and on the results of Evoked Potential testing. Clearly an LP wasn’t essential, as in other cases, like Tina’s, but I think if I had tested positive it may have speeded things up a bit.

I think you’re right to discuss your situation with your GP.

Ben

Thanks for your replies. I had the LP in the end as I felt I was putting a spanner in my own potential diagnosis. And guess what? It cam back normal! Grrrr… I’m thinking, as you have done Ben, that they will repeat the MRIs and eye tests a few months from now and see if there’s any change. I can see no why the diagnosis takes so long and so many are left in limbo-land! Very frustrating…

Rebecca

You’re right, and the doctor that carried out the LP said the same :slight_smile:

I am sorry that you didn’t get an answer from your lumbar puncture.

One thing I would suggest - not as a definitive answer but just to make sure that it hasn’t been missed - is to check that you have had a blood test to check your vitamin B12 levels. This does not form part of the usual “Full” Blood Test so it often gets overlooked HOWEVER B12 deficiency can cause Neurological problems which can mirror MS ones. See this from NHS website http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Introduction.aspx

I think that part of the problem is that B12 deficiencies are more common amongst older people so they might not automatically spring to a Doctor’s thoughts with a younger patient (not that they are that uncommon with younger people).

I have B12 deficiencies (as well as MS) and my Husband has pernicious aneamia so we both have to have regular injections to keep us topped up. If we don’t have them we both suffer from terrible fatigue and I notice a worsening of my brain-fog, mobility problems etc.

Treatment involves an injection from the Practice Nurse every 3 months (after an initial course of “loading” injections over 2 weeks). If you have a significant deficiency then treatment is through your GP and not over the counter supplements. Yes it’s a pain to need the injections but at least the treatment is better than it was back 50 or so years ago when the only treatment was eating raw liver. Yeuchhhhhhh

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Thanks for that advise. I’m taking extra B12 tablets but they may not be enough if, as you say you can have injections. Must be more potent! I’m very frustrated at the moment as I’ve still not met my consultant and recieved news that my lumbar was normal via the eye specialist. I’m sure I should get a letter from the neuro about the results? Jusr feels like I’ve been abandoned :(. Do you know how long does it usually take for results to come back? It’s been nearly a month for me now…

Thanks, Rebecca