Getting nervous about lumbar puncture and possible diagnosis

New diagnosis and before diagnosis
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Hi everyone

Do you mind if I reach out to you for a bit of a hand hold? I am sorry this is an essay.

I became unwell in January 2016 with a nebulous collection of symptoms - crashing fatigue, hair loss, mouth ulcers, pins and needles and crawling sensations in my face, burning palms and soles of feet, sensations of wearing tight tingling evening gloves and socks all the time. In addition, a frightening decline in cognitive abilities, memory and decision-making ability. GP was unimpressive and diagnosed me with Chronic Fatigue Syndrome after three months. I haven’t been able to work since this time - was an ICU nurse.

Two further GPs later by the December I had diagnoses of Hashimoto’s autoimmune hypothyroidism and extremely low ferritin, folate and Vitamin D. These issues have all responded well to medication and on a just-in-case basis I also started HRT at this point (am now 45).

I still couldn’t reach anywhere near my ‘normal’ level of cognitive ability or physical stamina - frequently having to go to bed at 9pm, sleeping as if I was unconscious, waking at 11am feeling extremely unwell and then sleeping again for 3hrs in the afternoon. I had a three-month period of awful urinary urgency and nocturia with no infection, accompanied by frequent choking on food and drink, biting the inside of my cheek on the right side, feeling burning ‘lines’ around my ribs, feeling my right leg was heavy and stiff at the hip when walking, fleeting incidents of vertigo including falling over several times in the street and at home, frequently misjudging where I was ‘in space’ meaning I was walking into doorways rather than through them, walking into tables rather than past them. I also developed a feeling of cold wetness at the right lower leg which was really disconcerting.

I feared I might be developing dementia and was disappointed to get a patronising head tilt and a prescription for antidepressants from the GP.

December 2017 saw the start of three months of new apparently CNS symptoms - every time I lay down on my left side I would experience what I know to be multifocal seizures. I’d sense it was about to happen, the right side of my face snarled like Elvis (only a lot less attractively) and I’d feel a surge of ‘power’ down my spine causing my right arm and then right leg to jerk up. I also began to experience salvos of repetitive twitching in various arm and leg muscles, trigeminal neuralgia in the right side of my face, loss of taste and bilateral tinnitus. FINALLY my GP accepted my concerns about ‘something neurological’ and referred me to Neurology.

I had an appointment in May (normal reflexes, Neurologist not concerned but said let’s do an MRI head just in case). Had the MRI in July without contrast, and received a letter a fortnight later explaining that to his surprise the MRI show “many areas of significant abnormality”. He went on to say that it is unclear whether these lesions are due to autoimmune inflammation or vascular cause so he is booking a lumbar puncture appointment for me.

I’m surprised to feeling such a mixed bag of emotions… I’ve been saying for over two years now that I don’t believe the CFS diagnosis is correct because just doesn’t take into account a number (most?!) of my symptoms. I have really felt that my GP has had tunnel vision and I do feel let down. However I also know full well that MS and other conditions that have neurological symptoms can be tricky to pin down and it doesn’t seem uncommon for a diagnosis to take a while. I do worry that I’ve experienced several significant episodes or relapses (if indeed it is MS) and have been left with the tinnitus, trigeminal neuralgia and frequently twitching in hands and feet.

Thank you to anyone who’s taken the time to read all this, I really appreciate it.

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Hi Harebell,

If it is a Lumber Punch your worried about; don’t. The actual procedure is not painful; in fact, the only thing you feel is a scratch when the anesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.

It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 liters of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.

These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.

If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a nights sleep; this is rare.

I have feelings of luv towards anyone who is an ICU Nurse. I better explain myself; last Christmas I actually died twice, and the ICU at my local resuscitated me, and here I am 8 months later feeling Fan-Dabby-Dozzy… It was nothing to do with MS; I got gangrene on a sore.

Back to you; I can’t see how this will help much; perhaps taxis to and from work to cut down on tiredness; you could contact Access to Work Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK lots of help available.

This next doc. Will explain the diagnostic procedure mult-sclerosis.org

Good luck

George

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Hello Harebell

George is right about the advice for lumbar puncture. Not everyone gets the dreadful headache, even without taking the coke/laying down advice, and a few get it anyway. But it’s a good plan to follow.

My word, but you’ve had a horrible few years. And in many ways, being a nurse might even make it trickier, because you understand, and use, medical terminology, your GP could have been a bit less sympathetic than s/he should be. But then, many people without a medical background suffer the same kind of treatment.

At least now you have actually not only seen a neurologist and had an MRI, but have been seen to have real neurological reasons for your symptoms.

I know, no one wants a diagnosis of MS, or indeed any other neurological disorder, but to have a potential end to the feeling that you have been incorrectly labelled and your symptoms misunderstood must be welcome at least.

I hope that the LP goes well for you, and that you get a diagnosis soon.

Feel free to come back here if you have questions, fear, worries, that we might be able to help with.

Sue

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My LP was a lot less painful than the majority of fillings and very quick.

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Hi George

Thanks for your support and very helpful information too; I feel better able to prepare myself and the 10th September doesn’t feel quite so terrifying.

I am sorry to read you were so seriously ill and needed a little stay in the ‘ICU Hotel’. It is the hardest thing for a person to get through and I hope it’s a comfort to know that us ICU nurses often think of our past patients and wonder how they’re getting on ‘back in the wild’.

thanks again,

Emma

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Thanks very much Sue, I’m appreciative of your kindness.

best wishes,

Emma

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Thanks Mstake that’s really good to hear. I am a bit of a coward I must admit!

best wishes,

Emma

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I just wanted to let you know my lumbar puncture on Monday was a total walk in the park!!

After all my worrying there was just a little sting on the skin as the local anaesthetic was first introduced and an easy pass into the right place with no incident. No nerve prangs, all done and dusted really quickly.

I took the full-fat coke and lie down tips and 48hrs on I have had absolutely no headache at all. Minor lower backache yesterday which resolved with paracetamol and has gone today.

Thank you for your support and advice, it helped enormously

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Hi Harebell Im new on here and your post is the 1st that i have read. I had my Lumber puncture only two weeks ago, and was petrified as when i told people that i had to go in they all said “OMG”, so was surprised that i even turned up as a bit of a coward when it comes to pain lol. Honestly Harebell i had nothing to worry about, the young doctor and nurse were fantastic. They explained everything that they where going to do, and again at each stage, which was great but you still worry. The most i felt was the scatch of the small needle and a slight burning sensation as the aesthetic was being delivered. I had told both the doctor and nurse that i was worried about the procedure, and the nurse spoke to me all the way through. I did suffer from the headache the next two days, but that was all. I got my results yesterday… MS positive from the Lumber puncture. People asked me how i felt about the result, and this may sound very unusual for most people, but i was actually relieved to the fact that after two years of being told it was this or that they had actually diagnosed it. Yes not curable, but managable with meds. I truly hope this of some help to you and good luck for the future. David

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Hi David

Thanks for your message and sorry to read you’ve just been diagnosed…I relate so much to you saying you’re relieved at finally getting an explanation for what you’ve lived with over the past couple of years though. My docs are expecting the LP to give a positive confirmation based on what they can see on the MRI and I do feel accepting of it. An unexpected turn in the road. My kindest regards to you,

Emma

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I’d reiterate that too. I was very worried about my LP. Went in at 1pm on Wednesday and was out by 2.30. The Dr and nurses were lovely and the actual procedure was only about 15 mins. I felt some pressure but not pain. I had back ache yesterday and a small headache today so I’m just resting but it really was OK. Now we wait for results…I’m actually hoping it is positive now so I can get on and have some treatment if I qualify. My message is, please try not to worry too much about LP. It’s actually OK.

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