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Lumbar puncture results clear

Hi, I am not yet diagnosed I have had 2 MRIs first one showed multiple lesions juxta cortical and right frontal and the second 5 months later was unchanged. Symptoms ongoing and new symptoms appeared. I had a lumbar puncture and called my Gp for results. The receptionist told me my results are all clear. I asked if she was authorised to tell me my LP results and she said “yes they are all clear. Would you like a follow up with a doctor?” I am so frustrated right now as I sit and type the right side if my face and head are tingling. My right hand and fingers pins and needles. I have many symptoms one of the worst being fatigue. But I have been in limbo for nearly 12 months and I still have no answers. I don’t think I can bear this much longer. Is it normal for Gp clerical staff to give you LP results over the phone? Has anyone else experience this?

Thanks

elle

Hello Elle

What seems abnormal to me is that you’re getting results of an LP from your G.P. Have you not seen a neurologist?

Generally, people see their G.P. with initial symptoms and are referred to a neurologist. The neurologist then takes a history and does a physical examination. The neurologist then refers you for MRI and other tests (including LP). The results of everything are then considered by the neurologist who then reports back to you what s/he thinks at a follow up appointment.

Sometimes a G.P. will do an initial examination and refer you for an MRI simultaneously with referring you to a neurologist. This then has the benefit of cutting out a bit of delay (although sometimes the neurologist will then have to re-refer you for MRI as the G.P. may not have requested a contrast scan or any of the spine which could be needed).

So in your position, you should arrange to see the G.P. and ask for a referral to a neurologist.

Best of luck.

Sue

Hi Sue

thanks for your reply. I am sorry I should have explained further, yes I am under the care of neurologist he sent me for both MRIs and LP. I have only been seen by a neuro twice and both different doctors. My LP was done 2 weeks ago and I contacted my GP to see if results from this had come back yet. I don’t yet have another apt with my neuro.

The receptionist told me results for LP came back and they were clear. Is this including the blood work or just the csf? My neurological exam showed some abnormalities heightened reflexes and my right hand has a very slight tremor and muscle spasms also. I am just confused I didn’t think they would be able to give that info out over phone if not medically qualified but I guess they can if it comes back clear? Does this mean I do not have ms is it ruled out? I just want answers as to what is going on with my body. Thank you Sue for your advice.

Elle

Hello again Elle

I’m as baffled as you as to why a doctor’s receptionist would give out information they didn’t understand.

A clear LP result usually would mean no Oligoclonal bands in the CSF or the blood. A positive would be O bands in the CSF, but not in the blood.

But as to how that affects the diagnostic process, apparently 80 to 95% of people with MS have O bands in their CSF. But that implies that up to 20% of people with MS do not have O bands. So strictly speaking, MS isn’t ruled out.

So really it’s all about what the neurologist thinks. Maybe chase up an appointment with the neurologists secretary?

Sue

Sue, you have been very helpful thank you for this explanation. I did wonder that too and I asked her “are you able to give me my LP results over the phone if they’ve come back?” And she said yes they’ve come back all clear. Do you want me to give you a follow up appointment with the doctor ?”.

I will contact the neuro Secretary on Monday. But it has got me a little anxious. My MRI said “multiple bilateral deep white matter lesions , subcortical and some in a left pericallosal distribution White matter lesions suspicious for demyelination” my second one with contrast came back unchanged this was 5 months later. Then the neuro said he would send me for an LP. I know this process takes a long time and I’ve heard so many people say limbo land is the worst and it is. But it is really helpful having a place where people can give you very helpful advice and support.

Thank you you so much I am so grateful for your support.

Elle

Hi Elle you sound the same as me word for word my lp was clear my I also have the lesions and my bloods are clear of any other autoimmune atm I believe some people can be negative s and still have one.

My mum had ms so I’m quite familiar with it. I get a lot of muscle twitches and limb jolting.

You know your own body best and if something is up keep pushing with the doctors

i would bypass the gp as they are not qualified to help and stick with your neurologist and if your not happy with your answer see another for a second opinion.

What other symptoms do you have

jade x

Hi jade thanks for your response.

I have since received my letter from neuro and my LP was normal which is unusual for ms He said and he will see me in June again.

I have many symptoms like most people but main ones I have is fatigue, stiffness and pain when I walk esp in hip and lower back. Spasms and I also have continued generalised muscle twitches and jerks of limbs and hands and digits. I have a slight tremor in my right hand and I also have noticed my grip is weaker in this hand I drop things frequently. I have pins and needles in my fingers and toes mainly the right side and I have facial tingling and have had trigeminal neuralgia once. I also have burning sensation in my lower Limbs amongst other sensations. I get stuck on words in middle of a sentence and forget what I was about to say frequently. I also have brain fog and balance issues and bladder hesitation at times. Oh the list is endless.

I am incredibly frustrated as are many people. I am trying to continue with raising a family, work and life! But currently I don’t have much quality of life. I was prescribed gabapentin for nerve pain and it has helped a little but I still find I’m struggling. My work have been so good but as that’s approaching a year now I can’t expect them to be so flexible and they also need answers. I have been crying lots mainly due to frustration and pain! My first mri came back with lesions but my LP is normal. I just feel lost.

Elle

Hi Elle I too have had lesions in my MRI I don’t know about my blood tests or lumber puncture as I haven’t seen the neurologist since September or October, I got the letter in November explaining that I have one demyelinating disease like patches in my head I haven’t had a full back and head scan, I think I was ment to have it in March it’s too late now. I have double vision (glasses corrected it) and many more but a few that are embarrassing. (not that I can say here TMI) I have had a lot of ill health for the last couple of years and I don’t know if the symptoms were the same, or different, good luck Kay

Your situation sounds much like mine. First MRI showed lesions, second 7 months later showed no change. I went to my Neuro appointment with a very detailed list of symptoms and dates, including horrible fatigue. My lumbar puncture is in the 9th April. A little nervous but it has been cancelled twice so I’m keen to get it over with now. Good luck at the Neuro. Limbo sucks.

It’s incredibly frustrating. I feel like I am going crazy. I’m sitting here right now and I have pins and needles in my big toe, spasm in hand and cold tingling down my back. Is it normal for an LP to be clear when there’s lesions identified. ? My neuro says different he says it unusual for it to be clear in ms. I guess I have to sit tight and wait until I speak to him in June. I hope you get on ok with your LP the procedure itself I found not too bad. And I was ok afterwards just a little bit of lower back pain but I have that anyway! Take care and thanks for your reply.

Elle

Hi kay thanks for your reply. It is so complex. The symptoms are awful but I think the uncertainty is worse. I hope you get answers soon too. Take care.

elle

I had no problem with the lp they were very good, drank a lot of cola full strength 3 litres a day for 2 days, it was a wonder that I didn’t rattle, I don’t drink tea and very little coffee.

What sucks is the time you have to wait between appointments, I got my second appointment with the neurologist in December but it was for April. My lp was in January, the doctor said that the MRI, the second one was coming in March, err I think it’s to late now, it’s to near the neurologist appointment to have it done now.

It’s not nice to have these symptoms every day you feel rubbish but you still have to go to work and look after the house shopping it doesn’t get done by itself.

It’s a real downer but I hope things go well for you, it’s a shame that you have to wait until June for your appointment can’t you phone the neurologist secretary up and be put on a cancellation waiting list. You might be lucky.

Kay