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Diagnosis fears

A few weeks back I had a follow up appointment with the neurologist after my first MRI scan. He confirmed I had small patches of inflammation on the brain, it wasn’t normal and he needed to do more tests. He wanted to do a blood test, lumbar puncture and VER. At that point I started to have a panic attack - I have avoided needles for the last 23 years and I don’t think there is any way I can bring myself to get a blood test or lumbar puncture. He understood and just sent me for a second MRI and the VER, which I’ve now had and am awaiting results for. The problem is I feel like at some point he’s going to want to do the lumbar puncture and from what I’ve read it’s necessary for diagnosis of MS. I can’t do it, I wouldn’t even get out of bed in the morning if I knew that’s what I was getting up for. I’m depressed enough as it is without having this stress piling on top. Not really sure what I’m supposed to do, because I will definitely flat out refuse a lumbar puncture. Pathetic it may be but I can’t do it. What do I do?

hi

you could ask your gp for something to help you to relax, diazepam or valium

also make sure that your neuro knows how distressed you are and ask him for an expert doing the lp

i have heard of others who didnt have a lumbar puncture

carole x

Hi Beowulf,

It is NOT essential to have the LP to confirm a diagnosis of MS, if the symptom history & MRI evidence are compelling. I’m diagnosed without!

However, I do think you will need the blood test, to eliminate other possible causes (MS doesn’t show in the blood, but several “lookalikes” do).

If you were relieved of the worry about the LP, do you believe you might be able to summon up enough courage for the blood test (much the lesser of the two)?

I had never had a blood test at all, untill past 40, so was extremely anxious about the first one, having very little idea what to expect. The longer you go without having to have one, the tougher it gets! But eventually, I had to face the fact there appeared to be something serious the matter with me, and that I couldn’t move forward without submitting to the blood test.

Since then, I’ve literally lost count of how many I’ve had. I still don’t like them, but I don’t suppose you’d find many people who do, if they’re really honest about it. I certainly drew the line at the LP, though, especially when I realised it’s not a conclusive test anyway, and I might still be no further forward. If I had known it would yield definite answers, I might have been persuaded, but I didn’t want to go through it, only to be told: “Unfortunately, it didn’t tell us anything helpful.” To me, this would mean I’d had it for nothing.

I’d definitely have a think about whether you can meet them halfway, and agree to the blood test(s) but not the LP. It might be enough.

Tina

x

Hello and welcome :slight_smile: As Tina says, you do not have to have an LP, but I would also agree that blood tests are going to be necessary to rule out other possibilities. I can understand your distress at this, but it is surely far better to go through blood tests once than have MS wrongly diagnosed for your whole life (especially if the thing you actually had would have been treatable!)? There are bound to be ways to get round your phobia sufficiently to have blood tests done. Maybe local anaesthetic, sedatives or even hypnotism? I’m sure your neuro and/or GP will be sympathetic and help you work something out. But don’t worry about the LP - you need never have one if you choose not to. Karen x

Thank you all. After my next follow up I’ll discuss options with the neurologist and GP. Quite embarrassing having the conversation when my arms are covered in tattoos!! Honestly I’d be better off if they just chloroformed me and got it over with! I hope it is something treatable but it’s been 2 years now of my life being ruined and I’m running out of hope.

Wow! Your saying you have lots of tatoos has thrown me! Do they not use needles to do tatoos? How did you cope with that then?

i`ve had 2 LPs and neither showed anything at all. They werent pleasant, but if you can refuse them, then dont have them.

luv Pollx

Yes but somehow my mind categorises them differently and I have no problem… It’s just a vibration really. I don’t understand it myself really! You would literally have to carry me unconscious into a doctors for an injection, but I’ll happily walk to a tattooist and even hand them over money for it!

[quote=“beowulf1983”] Yes but somehow my mind categorises them differently and I have no problem… It’s just a vibration really. I don’t understand it myself really! You would literally have to carry me unconscious into a doctors for an injection, but I’ll happily walk to a tattooist and even hand them over money for it! [/quote] That is actually very encouraging, I think. I know it does not feel that way now, but I wonder whether a few sessions of Cognitive Behavioural Therapy (CBT) might help you to reframe things so your brain deals the same way with different sorts of needles? Sounds like you are half way there. Worth talking to your GP about that as an option? Alison

Ditto that! I am an old-hat with blood-tests now as I’ve had so many in the last year, I don’t even need to warn then I might faint now lol!

Weirdly, I have had accupuncture, the first time my tummy trembed throughout as I was so nervous. It’s one of those weird things tho, I LOVE accupuncture now (in fact, wondering about what accupuncture can do for MS).

I would draw the line at the Lumbar Puncture tho, that is REALLY scary and I wouldn’t want one either. Like it’s already been said, I doubt you really have to have that to confirm, I’ve been diagnosed with probable MS from my symptoms and a spinal MRI, I was given steroids and have to go back for the head MRI very soon. The only thing that seems uncertain is if it’s primary progressive yet. The spinal MRI shosed loads of white dashes on my spinal chord. I think they can usually join the dots.

Good luck

Sonia x

Hiya,

I would agree with what others have said - as you don’t need an LP, don’t haveone (my daughter had one, was terribly ill afterwards, and then they lost the results anyway!!!) But as for the blood tests - I think that nowadays the venepuncturists (the specialist health care assistants who draw the blood) are so expert that you really honestly don’t feel a thing. Honest! If you look away, take a deep breath, and then it will all be over without you even knowing they’ve done it! Good luck!

V