Hi - I'm confused!

[Evs]

Hello All,

 

I've been reading the posts here for the last week and decided that I'm in the right place for friendly advice. My history is quite long and not very clear.

 

It started with a long bout (6 months total blindness) of ON in my left eye 20 years ago. I was sent for MRI which was inconclusive. My neuro did the full checks and noted upward plantar reflexes and a recent history of numbness/tingling. He mentioned a LP but said that as I was otherwise healthy, to go away and forget about it, but go back if I had any more symptoms (though I didn't know what other symptoms).

 

A few years later I had more episodes of numbness and tingling and the odd bout of colour loss, which I ignored ostrich-like. I carried on like this until I broke my ankle in 2010 and that's when things really started going wrong. My ankle healed, but I was left with awful pain which wouldn't go away. I was on the waiting list for orthopaedics when I spoke to a diabetic friend who had neuropathic pain. It sounded exactly what I had so I asked to see a neuro instead.

 

Neuro saw me, examined and noted my history and sent me for MRI. Results came back and instead of MS, NMO has been queried. I was tested for the antibody which came back negative, so MS was settled on again - until I was referred to another neuro who was more into inflammatory disease.

 

He sent me for VEPs and another MRI. VEP shows scarring and MRI shows lesions on my spinal cord and brain but not textbook MS. So now NMO is being queried again. Blood was taken last week to test me for another antibody so I have a 4-6 week wait for the result.

 

In the meantime, I've been offered a LP.

 

Now, call me a total coward, but I really don't want to go for one. I'm just recovering from what I assume was a relapse. My left leg has been so weak that I've been unable to lift it up enough to get my leg in my jeans. It started getting weak last November and the pain clinic physio sent me back to the neuro as she felt it was MS related and couldn't do anything more for me. It was at it's worst about three weeks ago, when I was also suffering with the heat we were having. I've never had any problems with heat - I've always ground to a halt with the cold. My GP used to say I had a faulty thermostat! Now, though, the second I get warm, I'm exhausted. I feel a lot better now it's cooled down and my leg is sort of better (I can lift it now, but it still doesn't "do what I'm telling it" so to speak).

 

I've also had bladder problems since early teens and odd episodes of "sunburnt" feelings, numbness and tingling.

 

Has anyone here had a diagnosis without LP (did I mention I really, REALLY don't want one?! I also have fibromyalgia and I just don't want any more pain). And does anyone know anything about NMO? Is it a form of MS?

 

Sorry for the long post - I hope it doesn't put anyone off replying.

 

Many thanks,

 

Evs

[Mal]

Hi Evs and welcome to the forum

 

i have MS and fibro as well so i know how pain can be magnified

 

as far as i know NMO and MS are diagnosed using the same procedures and are often confused ,

but the treatments are different

​but the symptoms you describe are pretty much similar to to what I've had and have

 

as for the LP , I was diagnosed without having one , i was DX by my MRI alone .

I've heard of plenty people who have MS that have had a negative LP

 

Best wishes

Mal x

[Scully]

Hello Evs,

 

Welcome to the MS UK forums and boards. Glad you decided to join us. It's been a very confusing time for you for sure.

 

Yes, NMO and MS are very similar, both effect the body in very similar ways. I guess this is confused further, as each patient, whether it's MS or NMO displays symptoms differently.

 

NMO is very rare, so I guess it makes it even harder to diagnose

 

Apparently, according to the NHS website anyway. Both NMO and MS will show lesions in the brain and spinal cord, but that the actual lesions are different. Not quite sure what that means, but there are differences.

 

The LP can tell the neurology team all sorts of stuff. It's not just a case of finding the characteristic 'O' bands consistent ( or not ) with MS, they search and find all sorts of proteins as well.

 

Personally, I've had two LP's, due to changing neurologists, each wanting their own set of tests done. I didn't have any problems with either of them. The procedure sounds horrendous and terrifying I know....but like most things...the hype is worse. It's your choice of course.

 

The conditions do look very similar. Although I gather the treatment regime is not the same, which I suppose why it's important for the neuro's to be able to separate one from the other!

 

In the meantime, settle down and stay with us. We are a friendly bunch and will be happy to help and support in any way we can

 

Scully

X

[Nick]

Hi Evs,

 

It's a scary thing to think about having to do the LP. My own experience is not dis-similar to yourself in that I had the same problem with O.N. with no firm diagnosis. The problem of obtaining a better diagnosis is not uncommon with neurological conditions and the importance of doing the LP in helping with that is clear. I found the actual procedure of the LP was OK and much better than I had feared. It is a difficult decision but one you should think about. The forum here is pretty quite at the moment but there are lots of folks here who will give you some really good advice.

 

Nick

[Rama]

Hi Evs,

 

I know nothing about NMO, in fact I had to google it to find out what it was, so I can't offer any advice concerning that. I can try and alleviate some of your fears about the LP. I had one before being diagnosed. The procedure itself was no problem - the thought of it was much worse than the actual procedure. If you decide to go ahead with it I would advise that you rest after for at least 24 hours. Preferably lying down to avoid the headaches that can occur following the procedure.

 

I hope you get some answers soon.

 

Gill x

[Evs]

Thank you All so much for your quick (and friendly!) replies.

 

I will happily stick around and learn as much as I can - and try to offer support to others.

 

I've been lurking around quite a bit and am enjoying the company, so to speak

[Nindancer]

Hi & welcome

I was diagnosed without a LP and was so relieved,

I recently embarked on a trial and agreed to the 3, yes 3, LPs I'd have over the year. Needless to say, I only had one as things didn't go to plan but the LP was a piece of cake, especially compared with what came after - stemcell aspiration from my hip.

Seriously tho, it was nothing like I imagined and it was OK and I wouldn't be worried if I needed another I used to pass out when I had blood tests, honestly, I'm a wuss - you'll be fine Good luck

Sonia x

[Evs]

Thank you ND.

 

Oddly enough, it's not fear of the procedure, but being in a hospital. I'm absolutely terrified of being kept in for any reason. I've had a hard time with an abusive ex and suffered physical attacks that left me with PTSD. I can't stand being around other people these days

 

Looks like I have to have it, though. Sigh.

 

Thanks again for all the support.

[Nick]

When I had my LP it was an out patient appointment and the actual LP procedure only took about 15 Minutes. Afterwards you do then have to stay lying down for an hour or so taking lots of water before its OK to get up. So I reckon in total I was probably only in the hospital for a couple of hours. It is well worth it as it gives the specilist a much better chance of diagnosis.

[Scully]

Mine were both done as an outpatient too. Further, the LP is usually carried out in a side room or treatment room where there are no other people, bar the doctor who performed it, and then a nurse who popped in to check I was laying flat and that I was drinking plenty of water or cola, that seems to contain all the sugars and caffeine required to aid speedy recovery and avoid the possibility of a headache afterwards.

 

Unfortunately in your case, it looks like the only way to make a certain diagnosis eh?

 

Scully

 

[Evs]

Thanks again, Scully and Nick.

 

My sensible head says it'll be okay. My other head is screaming at me not to go!

 

I know I have to - it's just another of life's unpleasant bits and bobs, I suppose.

 

Can I just ask, though - Should I drink loads before I go? I'm assuming I can't just get up and go to the loo halfway through - my bladder is bound to be it's difficult self.

 

I've been px'd diazepam to go but GP says I shouldn't be downing on it, then jacking up on caffeine so I'm wondering if I should grow a pair and go sedation-free. Back to the bladder, instead of drinking, would anyone suggest Pro-Plus instead? Neuro suggested Pepsi Max but there's no sugar in that, is there?

 

Thanks again.

[Scully]

Hello!

 

I have bladder issues as well, it behaves badly, particularly if I'm stressed.

 

I drank a can of coke before hand. Not the diet stuff, just the full version with all the sugar and caffeine. I was also offered water.

Before the procedure, you are asked to 'go pee' they know you need to be comfortable.

 

The procedure itself doesn't take that long. Basically, you lay on your side and try to adopt the 'foetal position' or as near to it.

There is only a mild stinging sensation where they shove the local anaesthetic in, after that, it just feels like someone is pressing on your mid back with a finger is all.

 

The doctor chatters away to you about anything and everything...bit like going to the hairdressers .

Once they are done, you can lay on your back, rest, drink another can of coke or two. And then you can go home.

 

Ignore any horror stories you may have heard. It's rare. You will be fine.

 

If I'm totally honest here. I was probably a bit like you are now. I was petrified, dreading it, all doom and gloom etc.. The reality was much, much easier....I almost skipped out of there...all that dread, stress and worry...and it was a piece of cake....both times!

 

Personally, I wouldn't complicate stuff by taking drugs, as your GP says, it may well counteract the effect of the caffeine and sugar.

 

But I would advise that you clear your diary for the following day, the more you can rest afterwards, and keep drinking, the quicker you will recover. They only take a small amount of fluid, but we have to make it up quickly to avoid a nasty headache the following day.

 

So, the day after, go to bed, make sure you have loads of your favourite TV programmes or films to watch, put up a 'do not disturb' sign and give yourself the day off.

 

I will bet, that in a few weeks time, you'll be back, saying...."well, that wasn't half as bad as I thought'

 

Scully

 

 

[Nick]

Good advice from Scully,

 

The fear of going is much worse than the actual procedure. I certainly was not keen to go! BUT It really is straightforward if you just take the advice given. Be optimistic, ..............An Australian lady the other day remarked that the Brits think 'Optomisim' is an eye disease! It ain't so get some of the Positivity , it goes a long way!

 

Nick

[Evs]

Wow, Scully. Thanks so much for the step-by-step. You make it sound easy! Full-fat Coke, though (shudder). My poor teeth are feeling the ache already

 

Do you actually stay on the same bed or do they move you?

 

Thanks, Nick, as well. I'm normally a pretty positive person, but... hospitals...

[Scully]

Hello Evs,

 

On both occasions the procedure was performed in a side room and I wasn't moved at all, just left to lie down for an hour or so. I drove myself home after both times and then went to bed, slept, watched videos, slept on and off, I was fine.

 

Yes, I wouldn't touch the 'full fat' version of coke at any time, but consoled myself that they were a one off.

 

Are you booked in for your LP yet? Also console yourself that your team may well be able to give you a definitive diagnosis !

 

Scully

 

[Evs]

Hi Scully - once again, thank you.

 

23rd September. I'm on a countdown

 

Nice to know they don't move you (though with my luck, I will end up being moved). It will be nice to know what's going on after doing an ostrich all these years.

 

One more stupid question - I wore my own clothes for MRI, but am wondering if they give you a gown or do you just wear something comfortable? The (strange!) reason I ask is because I used to work in the X-Ray department of a hospital and was appalled when I started to find that gowns were just folded and re-used after every use and just sent to laundry once a day ! I may have added to the budget but they all went to laundry after a single use during my time there! I also went prepared a mammogram by wearing an oversized shirt (a good choice it seems as the mobile unit I went to didn't have many and they all looked used). It utterly freaks me out thinking of wearing a gown that may have been used several times before me and not washed.

 

Anxious and OCD - nothing like it

[Scully]

Hello Evs,

 

I don't recall wearing one of those flappy gowns on either occasion, each was done at different hospitals, but I guess each unit has its own protocol. It does seem odd that gowns are reused, not sure I'd be happy with that either!

 

The doctor needs access to you back, around the mid point. I can't quite remember but I think I was down to my undies, and just had a sheet over me. Nobody else came into the room during the procedures. After the doctor left, a nurse called in to check I was ok, then the doctor returned and said if I felt ok I could go. Don't think they were 100% happy that I was going to drive myself, but I had no choice, there was little they could do about it, and, I reasoned that I needed to get home before the local anaesthetic wore off! The site of the LP was a little sore for a day or two, but nothing to worry about at all.

 

Try not to worry and stress over it, easy to say I know, but as I said, the thought of any procedure is often worse than the procedure itself.

 

Scully

[Evs]

Thanks again, Scully.

 

Yep, next time you have the misfortune of being in a hospital changing room, check out the gowns. They were hanging up and far from fresh smelling when I went for MRI, too - and that was a large hospital. Glad I knew the drill and wore my own comfy stuff with no magnetic bits.

 

Ours were dumped on a chair in waiting room after use, then folded or hung on pegs in cubicles by cleaning staff. I used to take each gown after the patient and put them straight into a laundry bag. Urgh! While most patients are clean and probably don't have infectious skin diseases, there were quite a few that definitely needed a good bath. Oddly enough, more women than men.

 

I used to chaperone on ultrasounds, too. Had a few cases where sonographer had to request the patient return after sorting their personal hygeine (we'd do trans-vaginal scans that need a probe inserted - I vividly remember wanting to gag when the patient took her trousers down. I don't think she'd bathed for a good while ).

 

Having said that, when I've gone for a scan, I've made sure to check that the probe is wiped down before being covered - a lot of times, the condom would be whipped off and probe stuck back in holster. In theory, it should be clean, but I was told that they should always be wiped. Some sonographers do, some don't.

 

We also had to be fumigated a few times after I complained about flea bites. I'm allergic, and unfortunately, our area and the corridor that formed the waiting area was carpeted. Nice idea, not very practical.

 

Just some of the reasons I hate hospitals