Kinda new to all of this..

Inactive_User · 13 August 2012 19:22

Hello,

Firstly - I guess a bit of back ground. This is all quite new to me so excuse me as I blunder my way through…

For a few years now I’ve had as my boss put it “weird stuff” happening… Where normal people get coughs and colds I got numb, tingling fingers, loss of vision, extreme stiffness in my neck and a feeling of weariness that doesn’t go away and makes doing more than one task at a time exhausting, untill about a month ago no-one had connected any of these together - they were my weird collections of things and that was that.

It was the blindness that triggered the trip to the eye causalty and a lot of scratched heads because there was nothing wrong with the eye - I just couldn’t see anything… so one little MRI scan later a trip to see a neurologist who tells me my white blood cells are behaving badly… Nown I have nother MRI scan tomorrow… and a follow up later - no more eye doctors just neuro people for me…

When I first spoke to the neurologist I thought it was for the eye thing and then he started to ask if anything else weird (as I called it) was wrong… he couldn’t get to my gp notes (wrong area as I went a bit further away for the eye thing than normnal)- but he was saying we were going to be okay and become good friends… I’m not good with doctors and although this was nice I’m not sure whether the longer term friendship idea appeals to me.

So now I’m asking myself what naughty white cells mean and a friend pointed me here… I’m not even sure I’m in the right place - but reading other bits and bobs around the site it all seems familiar somehow.

I’m not very good at looking after myself. I have a husband who is at risk of Huntingtons disease (a degenerative brain condition that is passed on in families by way of a nice gene) and my life seems to revolve around his symptom spotting and looking after his mother (who is disabled) and his father who is now in the later stages of Huntingtons and lives in a home… I guess I have been so focussed on them and being there for them that I kinda forgot me. And now I am still finding it hard to think about me. I was hoping that the people whom I had given support to would support me - but driving me when I was half blind was a “chore” and my hospital appointments are too far away and husband is working too hard to help with the household stuff…

I guess I feel very alone and frightened and I don’t know what is going on - only that I don’t like it much…

Inactive_User · 13 August 2012 20:01

Hi littleme

It is a confusing time with all these symptoms and noone telling you what they are thinking isnt it.

MS has many weird symptoms, but thats not to say you do have it. There are probably a million other things that it could all add up to, and there are some really great and knowledgeable people on this site who can probs tell u what they are. I do know that you are scared and confused, and I feel for you.

I understand about being a carer and not being cared for though as I seem to have spent my life supporting people too, and when my eyesight went (April this year) I felt a bit upset with some of those people who seemed to then view me as an inconvenience… maybe its because I no longer could support them? Seems like I have seen for definite who my real friends are!

Anyway, I wish you all the best

Paula xx

Inactive_User · 13 August 2012 20:20

Hi Littleme and welcome to the forum

Gosh you have had a lot on your plate haven’t you! Time to stop ignoring your health and putting everyone first.

The symptoms you briefly describe could be a sign of MS or could be something else. There are many things that can mimic MS; vitamin deficiencies, iron problems, auto-immune diseases just to name a few. The main thing is you’re being see by the right person - a neurologist. I’m not sure quiet what he means by naughty white blood cells - I mean you can’t see white blood cells on an MRI as far as I know. But he’s obviously thought of soemthing which is why he’s planning on repeating the MRI and following up.

In the meantime I know it’s hard but try not to read too much - even if you have MS all of what you read isn’t true and having MS certainly doesn’t have to be the end of the world, many people live on to have very fulfilled lives will minimal problems. Lastly try not to stress about what if - it won’t help you and sometimes stress can make neuro symptoms worse. Try and focus on each day and keep a concise record of symptoms that you have in case you need to refer to them at a later date.

Whether its MS you end up having or not you’ll find an understanding bunch of people here who will support you and be there. Its difficult for other people to understand neuro symptoms particularly as a lot things that are wrong can’t always be seen. I’m not diagnosed yet and this forum has been wonderful whether its been to have a moan when I get down, to speak to other people in a similar situation to know I’m not going mad with the strange things that are happening or knowledge on what to expect and various tests.

I hope you get the support you need here and please know you’re not alone. Good luck with the next MRI.

Reemz

X

Inactive_User · 14 August 2012 09:55

Hello, and welcome to the site

I’ve never heard of a neuro mentioning white blood cells to a patient with suspected MS, but neuros can be less than brilliant at communicating with patients so maybe he thought he was being reassuring or something(?!). White blood cells are related to MS in that it is the T and B white blood cells in immune system that go wonky in MS, but that doesn’t mean that it is definitely MS that your neuro was rather obliquely referring to - the immune system is involved in all sorts. However, given your vision, I think it’s probably a fair assumption that the neuro has MS at or near the top of his list of possible causes.

The good news is that, whatever this is, you’ve had it for several years and managed OK and there’s no reason for that to suddenly change just because you’re getting it investigated. So try not to scare yourself with thoughts of everything suddenly falling apart.

Try and be patient with your husband. He’s probably scared too and not wanting to face the possibility of you being ill. There may also be a bit of fear for himself in there too - if you’re ill, who’s going to look after him if he gets ill? It’s a complicated situation

So one day at a time. It will sort itself out eventually (hopefully soon).

Karen x

Inactive_User · 14 August 2012 10:20

Thanks Paula and Reemz for the lovely replies…

I’m feeling happier today, and you’re right I need to start looking after me a bit more. It always amazes me how writing stuff down can help to organise my thoughts and yesterday’s splurge has helped me to be more positive today.

i think the scan today is to see what is happening with the nerve bundles in my elbows. (These were inflammed a couple of years back, but have been playing up again recently.) The neuro was a little more specific then I put before - he started to explain that he thought the white blood cells were naughty because they were not recognisig my nerve cells as part of me and so were attacking them… and that the MRI might show us something else - he didn’t say what… And I’ve had so much blood taken from me to test for defieciencies in this, that and the other that I know have a favourite spot in the blood test place at the local hospital.

And Reemz - It is amazing how different people react. In fairness my true friends have shown themselves during the past few years, and are great - they’ve been there for me through the Huntingtons trials and tribulations and they have shouted at me to look after me and have been brilliant through the eye thing. I think its the closer people, like my husband, who are so focussed on the Huntingtons that a bit of blindness, numbness and tingling doesn’t register with them as being scary - maybe a tad annoying - but how could it be scary? Its certainly not as scary as Huntingtons and I should be grateful about that and just “get on with it” The thought that I might need help doesn’t register with them. I guess I will have to be a bit more assertive in the future.

At least dealing with the Huntingtons thing has taught me to be patient, not to read in to things too much and that doctors are not gods and what they say should be taken with a pinch of salt, and there is certainly no point panicking over things that can not be changed. It has also taught me to grab every oppotunity offered with out reached hands and to BE POSITIVE and see the funny side in things. So I’ll just remind myself of all that and apply it to this situation.

So another MRI tonight - I have picked out my favourite CD to take with me and I’ll trundle along and be okay. At least its a bit of time to myself without having to argue over the remote control.

Thank you all so much…

Inactive_User · 15 October 2012 14:52

Hello again,

Well, I have have seen the neurologiost again and was diagnosed with clinically isolated syndrome. I can’t say that the appointment was a great success.

Firstly - I was the 2nd to lst appointment for the day and he was an hour 1/2 behind. Meaning that he seemed to want to tell me the news and then get rid of me as quickly as possible.

The firstthing he asaid was “you know Becky” - could have been Becky - to be honest I have forgotten her name… “she’s your MS nurse…”… which was nice, as the last time I saw him he hadn’t mentioned MS and it was a close friend who pointed me inthis direction… so the first I knew about MS from the medical people was being told that Becky was mu MS nurse…

My blank face, and my husbands little intake of breath (husband was sure it wasn’t a nerve thing at all) made him do a bit of a double take… and when I said “No, so why do I now have a nurse” or words to that affect, he told me to take a seat and then went through the clinically isolated syndrome, and went through the results of the brain MRI from April, and how the eye thing was a one off and that we could all focus on the future…

MMmm… I again looked confused. I asked about the reasults of the spinal MRI and asked if we had come any further along the way into sorting out if my tingling fingers were related, or whether they truly were a result of over enthisiatic elbow leaning at work (as I hasd been told by a hand specialist in the past). he looked a bit flustered… I then asked if he had, had a chnace to look at the fax from my GP whom I had seen a few days before as Imy feet had gone numb and tingly… again - a kinda flustered look flickered past his face and a frantic flicking through of notes…

Now, because I had an eye problem I have had the ordacity to go to a hospital outside of my postcode catchment area (to a hospital very good with eyes), which means that simply typing in my name and pulling up my patient notes does not seem to be possible, instead there apears to be a wad of papers stuffed into a brown folder which gets more jumbled as time goes by…

So I am popped into a gown and my toes are wiggled up and down, my knees are prodded and elbows are wriggled about a bit. and then I am told that a lumber puncture would be good idea and he’ll see me in 6 weeks for that and the results will be available in 6 weeks after that… so just before Christmas… And that I’ll get a leaflet telling me about clinically isolated syndrome and with contact details for the nurse… and thats about it… I am hastily ushered out of the room…

I have to say I was probaly not assertive enough, but I wanted to keep husband calm and it all came about so quickly. The neurologist imparted most of the bits of information from the other side of a curtain as I hastily got in and out of gown…

So now the leaflet has arrived and I don’t know why I need a lumbar puncture when the leaflet seems to be saying the the MRI’s are more reliable. I also don’t know if it will just be used as a point in time reference - this i what it looks like now - and whether I’ll need another int he future…

I have phoned the nurse number, but no luck so far…

So - from experience in other areas, I kinda know its important to ask questions and even more important that those questions be the right ones, which will give useful answers… so if anyone can help with the phrasing of relevent questions to email to the nurse, or of anyone has any insight for me on this I would be grateful.

I also wanted to know if anyone else had, had similar experiences with being introduced to your MS nurse? As I think if my friend hadbn’t pointed me in this direction before the appointment I wouldn’t have known anything at all about MS and it would have been a nasty shock… As it was, husband was so freaked by it that he became mute for the the rest of the appointment.

Inactive_User · 15 October 2012 18:13

I think you’ve been very generous in saying that the appointment wasn’t a great success! Poor you to be left in such confusion

Sorry if I add to it with a few questions…

Do you actually know what the results of your MRIs were? (How many lesions and where?)

Is this neuro an MS specialist?

It sounds like you have had more than one distinct attack of symptoms - is that right?

CIS is a diagnosis that should be made if there has been one attack and there are lesions in only one area that is typical of MS.

If this neuro isn’t an MS specialist, then I think the simplest solution might be to request a second opinion from one. If he is, then you can either excuse this as a bad day and play ball or you could ask your GP to write a letter to him, summarising the events that are not on the hospital records (so everything is on one letter) and requesting clarification regarding where your diagnosis stands versus the McDonald criteria. Your GP might be reluctant to do this, so you can always do it yourself.

I recommend being nice (even if you have to grit your teeth!) so you don’t burn any bridges you might need later (reserve righteous anger for when you really need it), so say something like “I think perhaps that I didn’t explain myself very well, so I thought it would be helpful if I summarised…” and make sure and ask why you need the LP: exactly what will happen if it is negative / positive?

I hope your next appointment is infinitely better!

Karen x

Inactive_User · 16 October 2012 14:43

Hello again,

Thank you… I have to say there is a lot in your message I have yet to understand. Which shows that I need to ask more questions, but at least I have a starting spot.

I don’t want to burn any bridges, as no doubt I will then be passed back to my local health authority who have, in all my dealings with them in the past, been equally poor in less pleasant surroundings. A local doctor trying to diagnose my husband’s genetic disorder using Google was perhaps our lowest point from them… So I will persevere, at least for the moment, with what I have, which might be better than what I could get…

Do you actually know what the results of your MRIs were? (How many lesions and where?)

Erm… I don’t know about lesions – he said my nerve cells showed that it was definitely a clinically isolated syndrome because there were scars? Is this the same thing? And he only referred to the head MRI – not the spinal one.

Is this neuro an MS specialist?

I think so. I think he is much in demand in other places as he visits my “new” hospital just once a month.

It sounds like you have had more than one distinct attack of symptoms - is that right?

Possibly. Looking back now I would say “Yes”. The nerves in my elbows were definitely inflamed a couple of years back and the nerve messages were slower than they were meant to be. (I was zapped by an old man in a lab coat several times to confirm this). This was put down to leaning on my elbows too much at the time. And I went away and took the necessary steps – like ridding work chairs of arms and setting up my desk so my elbows were not on the table – however, the tingling, numbness thing still comes back sporadically.

The most recent feet thing felt like the hand thing, just in my feet. I’m not sure where these nerves start, or if it is possible to lean on them too much as well…

And I have also had countless blood tests and heart test things to try and work out why I get so tired. The best explanation on offer was that I might occasionally be low on salt. Not that my blood tests confirmed this – it was a hunch from one GP who thought I was an over reacting “silly thing”… however, this was the same GP who told me that supporting someone going through the Huntington testing process was probably far less stressful than having a row with your mum and I should “Man up and get on with it”… I have now moved to a different GP – he doesn’t shout at me when I have an ear infection and actually tries to help me, instead of telling me to come back in 6 weeks if I don’t feel any different…

I’m not fussed if the toes and fingers are my own bloomin’ fault for leaning on things too hard, or doing something stupid posture wise, I am just after clarification. My new GP said that I could consider surgery which moves my nerve bundles from my elbows to into the centre of my arm instead to help stop the tingling. Of course if it is MS related, the surgery would be pointless. (as far as I understand). I would just like to be able to trust that my hands will work from one day to the next.

Requesting clarification regarding where your diagnosis stands versus the McDonald criteria

I have no idea what this is – but I shall read more and find out.

Right, so I am now off to write a nice letter, explaining that I was a bit flustered and that maybe I had not be clear about the things that I said…

Thanks once again, and sorry for the essay… If you have read this all the way through you deserve some kind of endurance reward and maybe even a pin badge.

Inactive_User · 16 October 2012 14:43