I've posted on here about my ridiculous history with doctors and testing.
I have been having years of symptoms- vertigo, balance, vision issues, weakness, cognitive etc. But been repeatedly told it was 'all in my head' etc. I'd also been evaluated by Audiology for the vertigo/ balance issues and was referred to neurology back in 2015- but that went literally nowhere. The neurologist didn't even ask me anything about it!
Short story- in December 2018 I had an LP that came back positive for (multiple) Oligoclonal bands. I had the LP because I was having abnormal movements- they were testing me for things like encephalitis.
But I wasn't told about the positive test until September 2019 (so NINE months later) and that was only because I asked about it. But I was told that the test was invalid because no blood samples were available for testing in comparison.
When I looked up what O-bands were I was really excited, and felt that this could explain the years of symptoms I'd been having, that were dismissed by doctors.
But it turns out that the O-band test was done by mistake! But a good mistake!
I put in several complaints asking if my symptoms could be related to the O-bands, I was repeatedly told that the O-band test was not important. That whole process really destroyed my mental health and caused me so much stress.
I even submitted a report from my optician- she'd been concerned that something neurological was going on and had prescribed me prisms because my eyes are no aligned.
So after the last complaint I received a letter saying that my symptom history and test results had been passed onto 2 neurologists who specialise in neuro-inflammation and they've recommended I get a 2nd LP and with the paired blood samples. FINALLY!
I'm still angry because I was made to feel I was paranoid and crazy, that I was being a hypochondriac. It honestly made me feel suicidal at times.
And they finally say that I should have the blood sample tested, but no apology for how long it took for them to admit that.
I had the letter 4 month ago about having the second LP, and I had no idea when things would be getting back to normal in the local hospital.
So I had a phone call from the hospital yesterday to book my LP in for next Tuesday. The nurse who booked me in was confused about why I was having another one, she booked me in last time.
I'm so relieved because I had no idea when I'd be getting it.
It's a bit frustrating that I have to go though another painful LP, despite having positive O-bands, just to compare the blood. But I'm hoping it will move me towards a diagnosis.
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stripybutterfly
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I had 2 LPs done. My wonderful neurologist moved away and the new one wanted another LP🤦♀️. Crazy. Guess what?? The second one said I had MS too. Good luck on Tuesday!
I wish you luck stripybutterfly !! I hope it will bring you closer to a dx also! Have they done an MRI yet? BTW, your as crazy as the rest of us!☺️🤣🤗💕🦈
Good luck next week. Sorry you had to go through all this so someone would listen to you. I'm not sure why they want a 2nd LP, which I don't think will be much different than the first one. I hope you will finally get the answers you need so you can move forward with an answer. Keep us updated when you can.
Even though my spinal fluid tested positive the first time- there wasn't a blood sample to test in parallel. Either the doctor doing the test didn't take one at the time or it 'didn't arrive' in the lab. And blood cannot be tested in parallel if it's been more than 2 weeks since the LP.
If you have O-bands in your spinal fluid but the blood is clear, it usually means MS. But if you have O-bands in your blood as well as the spinal fluid it can mean other diseases.
So this time, they'r making sure that a blood sample is taken for comparison agains the spinal fluid.
It's frustrating because I wish they could rely on the positive CSF test, but they have to do it properly and test the blood at the same time to confirm a diagnosis.
The first O-band test was technically done by mistake- I had the initial LP to test for things like encephalitis, because I'd developed these weird movements and other neurological symptoms.
So this second time, it's being requested because neurologists who specialise in neuro-inflammation (they both specialise in MS) think it's worth repeating the LP because they think it's relevant to my long symptom history. Encephalitis was ruled out, but it could be that I have MS and that's causing the symptoms.
I just sure hope you get some definite results. I had LP with no results. Also the tech was awesome. No pain and very considerate of me the whole time. Dr. had to come in and help find safe place to do LP. My lower back is fused and I have very aggressive Osteoarthritis in my spine and major joints. I know they numbed the injection site with "Lidocaine" injections around the LP site.
I hope you find out what is worng soon. I know it can be so exhausting going through all those tests with no results. My daughter is going through the same thing. They haven't been able to to tell exactly what is going on with her.
I had the LP today and it was fine. They spent ages finding the right place to put in the needle .
Last time the doctor didn't do that and kept jabbing the needle into the bone, which was excruciating! I was so scared of having the LP today because the last one was so painful.
But I barely felt it- and the doctor even said that I was the best patient he'd ever had! I think I was expecting the LP to be like last time, so I was just like 'that was it?'!
Anyways, so the doctor apologised for what happened with the last LP- which was so validating. I had the last LP back in December 2018, and I've been fighting since then, put in numerous complaints, to find out what's going on. I was made to feel I was crazy and told that no mistake had been made.
He explained that blood wasn't taken at the same time, and apologised that this mistake meant that I needed another LP! And reassured me that they would make sure that blood was taken and tested.
So it was an emotional day. I'm lying on the sofa now relaxing. The anaesthetic is starting to wear off now.
Thank you for the well wishes. It helps to have a place to discuss this!
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Update with no diagnosis 
DO I HAVE MS
Anxiety, stress,frustration 
Testing for MS and MRI differences
Finally have a diagnosis! 
