Test results- please help

[stripybutterfly]

I had lumbar puncture and MRI before Christmas- I got the results today. (I'm in the UK-so it was done on the NHS)

The LP results are incomplete, because the bloods to test in comparison have got lost or didn't arrive in time to test in parallel.

But I do have Oligoclonal bands in my CSF.

It says-

'Multiple Oligoclonal bands in CSF. Unable to confirm local synthesis. No paired serum sample to test in parallel.'

Also the MRI showed 'T2 hyper intensity within the white matter which are non-specific.'

I am sick to my stomach that they lost the blood! Now the LP results are useless.

I still don't have a diagnosis!

[Kenu]

So do you have to start all over again? Ken 🐾🐾

[greaterexp]

Given the MRI results along with the CSF test results, I would wonder if the blood test results are truly necessary. You might ask the neurologist about this.

[stripybutterfly in reply to greaterexp]

I dunno what to do. I just can't believe I had to wait 9 months to be told that the LP result is basically 'void'.

He didn't seem to know much about it.

He said that because my blood protein levels are normal- and they are usually very high if you have MS. But all the reading I've done, say that blood protein and glucose levels are normal in MS. And it's the 0-bands that are important.m

On this site it says-

Glucose, protein, lactate

Typically normal in MS

If protein >100 mg/dL, seek other diagnosis

arupconsult.com/content/mul...

[greaterexp in reply to stripybutterfly]

Is it possible to get another opinion?

[bxrmom in reply to stripybutterfly]

I'm sorry they didn't tell you sooner. Is there a way you can get a second opinion as greaterexp asked? Not sure who dropped the ball on this but someone did

Jessie

[Peruzzot in reply to stripybutterfly]

As others have already suggested see if you can get another opinion. Try to get a doctor who specializes in MS. It makes a huge difference. The first neurologist i had specialize in head trauma not MS. I had to teach her about MS. My medical expertise consists of advanced first aid. But by the time I finally got to talk to her I had gotten really smart about MS. It was a nurse practitioner, with the US military system, who got me started with the MS journey. She jumped right at that with just the basic symptoms I had described to her. The full fledged doctors tried for nearly 5 years to prove her wrong and only managed to prove her right. I never got a chance to ask her why she immediately thought MS. She moved back stateside before I could ask her. I have no family history of MS and didn't know anyone at the time who had it.

[mm1527mm in reply to greaterexp]

I wondered the same when reading the post being that multiple bands were observed it may not be needed. Sorry to hear this happened to you. Lp are not easy. Hope they have enough from the results for you.

[stripybutterfly in reply to mm1527mm]

I'm really hoping that they can just go from my symptom history, the MRI and the positive O-bands and not have to do it again. Because the LP was excruciating!

It's very unlikely I have any of the other diseases that have O-bands such as Lupus (I've had negative tests for this), Lyme etc. I don't have the symptoms. MS is the one that fits.

[CalfeeChick CommunityAmbassador]

Be patient and do what you can with the NHS to try to get completely retested. MS, especially in beginning stages is very difficult to diagnose. In my first year, trying to get a through diagnosis, I had multiple MRI's, 35 vials of blood, visual testing, spinal tap,etc. If nothing else, try to get symptomatic medications to help with your symptoms.

[Fattius]

There are many copy cat diagnoses that mimic m.s. Many that share the same symptoms. So only advice I can offer is keep getting second opinions, 14 y.o. and 30 before I got diagnosis. Please don't stop because nobody's life is going to including ur problems. It's real and until they find whatever it is your just a number and bolstering there's in the bank is the only name in their game!!! Good Luck.

[Frances_B in reply to Fattius]

Fattius - if stuff is done under the NHS in the UK there isn't any bolstering of bank accounts like there is in the USA where you are. NHS is a proper free public health system - the problem is never-ending under funding from Govt and a bit of a postcode (zipcode to those in the USA) lottery like there is in Aus where I am. There are options to "go private", but NHS is free with one of the worst problems being extremely long waiting times for appointments and treatment - as stripybutterfly wrote above, she "just can't believe I had to wait 9 months to be told..."

[stripybutterfly in reply to Frances_B]

Even in the UK, people who've are suspected of having MS and have had tests such as MRIs or LPs- they are usually told within weeks. There are rules/ guidelines of when someone should be told.

And for example, if someone is suspected of having cancer, they have to be seen within a certain timeframe.

My 9 months, is not typical. It's very negligent! And also the fact I wasn't told that the test was incomplete!

[mrsmike9 in reply to stripybutterfly]

Oh, I would be livid! I'm so sorry...

[Peruzzot in reply to Frances_B]

It is not "free" health care. You get taxed heavily for that "free" health care. Italy, where my husband is from has a version of NHS as well. I was not at all impressed with the care or the hospitals. I spent time in 2 hospitals while I was there in Italy. If they had been here in the USA they would have been shut down for sanitary reasons alone. Doctors' bedside manners in Italy are non existent. From the sound of it the same is true under NHS as well. I much prefer the health care I get here in the USA. I can usually get an appointment within 2 weeks for anything that isn't an emergency. I also usually get answers to exams within at most 2 weeks not months later. Health care is expensive and everyone pays for it one way or another.

[Frances_B in reply to Peruzzot]

You are entirely correct - health care does get paid for one way or another - whether it is via a taxation system or private insurance. Apart for the postcode lottery element, at least with free public health care everyone gets treated and there isn't the discrimination that arises from being from part of a poor socio-economic stratum of society. Even if someone may currently be a "member" of a more privileged sector of society and have the a decent income that comes with that place, their situation can so easily change and put them in a totally different place. While I can't comment on standards of care in Italy I know for sure that the USA is one place which is not envied for its health care system/s and the private enterprise basis for so much of its healthcare system has the capacity to make it an extremely discriminatory system.

[stripybutterfly in reply to Frances_B]

I got an LP and MRI within a month of the doctors appointment when he suspected I have MS. Which is quick! Waiting times tend to be long if it's non-urgent.

The 9 month wait is negligence, and not typical at all. Like I said, most find out if they have MS or not within weeks.

Also, I do appreciate the NHS, because if you become disabled or are unable to work- you still get healthcare. Doesn't matter how rich or poor you are.

[Frances_B in reply to stripybutterfly]

So - if the length of your wait for answers was so much longer than the usual, what excuses were offered when you contacted the relevant people to find out why it was taking so long? (I'm assuming here that you did follow up on reasons for the delay when the time frame went so far outside the usual)

[sashaming1]

Do you have a Neurologist? He or she should be able to read the MRI and figure out what to do about the LP test.

[artmom]

Hi. So sorry you’re still in a state of not knowing stripybutterfly. I cannot believe the frustration of the situation. You must be furious. How are you feeling at the moment?

I’m in the UK and am trying to get a second opinion (- or rather a proper opinion rather than a somewhat negligent one first time round). There are currently no neurology appointments available in my area. None. It’s coming up to a year since I first started experiencing the more consistent symptoms I still am now. I’ve asked for an ent referral which I think you suggested stripybutterfly. Hopefully that will make some things clearer...if and when I get it. I do feel massively downhearted by all this but assume that were I actually desperately ill and in need the nhs would be there. Thank goodness for it, ultimately.

I’m unclear about the protein issue. What is that? Is there something to be told via blood tests?

[stripybutterfly in reply to artmom]

I'm feeling pretty traumatised by it all, to be honest. And very angry.

I spoke with an independent health advocate and she urged me to make a complaint, because this is so serious! She couldn't believe what had happened. And that they took 9 months to tell me.

The neurologist acted like it was no big deal and tried to downplay it. But the advocate said I should be entitled to another test and a full apology and explanation. And also recognition of the emotional trauma it's put me through.

There's also an added issue of- years ago I was diagnosed with FND/ conversion disorder, with ZERO testing. Which I believe was negligent in itself.

It's so upsetting that now a doctor finally took me seriously and ordered tests, and they get botched up. I felt like I was finally getting an answer, and I feel so let down.

If I do have MS and another neurologist clearly suspected I have- it would explain a LOT. I have I guess, pretty typical symptoms. Recurrent bouts of severe vertigo, dizziness, balance and proprioception issues (walking into doors and walls), memory and cognitive issues, weakness, muscle spasms, and I've had what I believe is the 'ms hug'- squeezing in my chest and abdomen. And I've also been having episodes of choeratic movements and seizures.

[artmom in reply to stripybutterfly]

Hi I wondered if you’d gotten any further with testing/diagnosis/answers/apologies? How are you doing?

[stripybutterfly in reply to artmom]

Wow, thanks for asking!

It's been a nightmare! Nobody has apologised yet or explained what happened to the blood. Also, they are downplaying the significance of these O-bands, IMO, to cover up their mistake, and also not telling me for so long.

I had to go through PALS, because I have such a long list of complaints. They said I should have been told back in January that the test was botched (that's when it first was put on the system), and been offered another test. She basically suggested that they were trying to cover it up.

And I want a second opinion/ further investigation.

Also the fact I've not been referred to anyone about these seizures- despite my neurologist knowing about them since last December. I spoke with a nurse who agreed that was way too long to not be referred to the Epilepsy clinic, and that if I have another seizure I should go to A&E.

So yeah, it's been really hard. PALS have been great though.

[artmom in reply to stripybutterfly]

It’s good that PALS has been supportive. But sounds like it’s pretty lacking apart from that. I have a second opinion coming up (more than a year after I first went to the gp, though that’s partly my fault being reluctant to go back and challenge) and I’m getting nervous about it. Apart from anything, I think it’s the same department which I didn’t realise - the gp offered a different hospital but it’s all the same trust and all within one big department. So I already feel biased in thinking I won’t be seen fairly! Which is obviously the fear anyway with the original dx.

This appointment has been maybe six months coming from my asking for it so if I were you I’d request more as soon as you feel up to it.

[artmom]

It is really the absolute worst luck combined with carelessness and negligence. I am not surprised at your anger. I’d be interested to hear more about the health advocate and how that’s working.

I have what appear to be very typical ms symptoms (despite the neuro saying they were not they appear to be very like what people here experience), but whenever I think that I realise fnd can encompass any neuro symptom imaginable. So how I do I know? I wish I could stop trying to work it out. But while I’m symptomatic, how can one just ignore? I’m as mindful as hell but they don’t just disappear unfortunately.