Introduction

[Elliebean]

Hi everyone, I'm new here and thought I'd better introduce myself

 

I am 36 yo, with a beautiful 10 yo son with complex special needs.

 

My own health history is a bit complicated. I hate listing my symptoms because I'm a very positive person that just lives each day as it comes and I don't like thinking about some of the things that have happened with my health, or the fact that no one can agree what's causing it! I have a feeling I'm not going to come out of this post sounding very positive, though. And I apologise if it gets a bit long.

 

I have another appointment with the neurologist on Monday which is what has bought this all up again, and know I have to pick back through my history which I hate. This time, I lost the ability to walk in a straight line and the GPs neuro exam showed another deteriation especially with my muscle strength on the right.

 

Firstly, I have not been dx'd with MS at the moment, but have had problems for up to 8 years. My GP is convinced it's MS, and I've seen a neuro and had an MRI 2 years ago that was clear. He offered a lumber puncture and I refused at the time and I was "mothballed"

I have also had repeated investigations for a condition called Lupus which have also all been inconclusive, and to be honest I am fed up with the blood tests and scans and everything else that never seems to show anything.

 

One thing is clear is I have had spells of recurring neurological symptoms, and neuro exams are showing increasing loss of muscle strength, tremor, some reduced reflexes and areas of numbness. I get vertigo occasionally, frequent dizziness, tingling and numbness especially in my feet, electric shock and prickling sensations, heaviness in my limbs, fatigue, brain fog, sensation of falling backwards which has lasted for several months at a time and I just adjust to in the end, falling sideways, especially to the right, and one spell of misted vision and bruising-type pain in my right eye. Once I lost the use of my right leg completely for a short spell and was investigated for stroke, but that was negative as well. The symptoms also come in waves - the last time I had any significanet neuro problems was about 18 months ago. I'll get a couple of acute dramatic bits, and then they'll be a longer spell of a couple of months where it all settles down again, then I'm OK for a while.

 

The underlying health conditions I do have are severe Endometriosis which causes a lot of chronic pain and could alone explain the fatigue and brain fog, and Fibromyalgia that can also cause fatigue, brain fog and some neuro symptoms. If I do have Lupus, which is also notoriously hard to test for though usually shows certain anitibodies eventually, it means my immune system is attacking my nervous system just in a different way. The symptoms can be very similar to MS.

 

I'm sorry this has come out more like a rant - I'm just really dreading this appointment on Monday. But I just feel like I'm dragging my right leg around at the moment, and it's quite scary having symptoms like that and not knowing why is the perfect smiley for how my body feels right now!

 

I really don't like thinking about how it's already affected my life, I just adjust and get on with things which I feel is the best thing whatever is causing it. The weakness in my right arm never went after the last last bad spell and it definately limits what I can do a bit.

 

I don't know whether I'm in denial, and whether I should fight harder for a firm dx as it's just getting worse. I guess I'm just looking for somewhere to find support and maybe some answers - I know from experience that the best support always comes from people who know what you're going through, rather than professionals. And the idea of MS does scare me and I've always avoided reading up about it, which is daft really. I'm usually good at tackling things head on.

 

Anyway, I'll stop there before I bore you all to tears! I look forward to reading more of the site and maybe facing a few fears as I carry on yet again with the next round of tests and scans

 

Thanks for listening xxx

[toby]

Hi Elliebean,

Welcome to the forum

 

wow you are in a bit of middle ground at this time, waiting for a dx can be so tricky "for gods sake just tell me i have something" you want to scream at them sometimes.

 

we are here for this exact thing....Ranting,

its good to talk

 

toby x

[Hezza]

Hi Elliebean,

to the forum. Your post didn't come across as negative or as a rant - just a clear and concise summary of the symptoms and problems which you've faced for many years.

 

You have a great attitude to whatever "it" is that you are facing - taking it a day at a time is enough for anyone and you have your little boy to look after too.

 

I'm sensing that now you are in the place where you need a name for whatever "it" is - for me knowing what I'm living with and having a label to tell others makes it easier. When you see the Neuro on Monday share this with him - be prepared though he may order more tests, including that dreaded Lumbar Puncture.

 

Now for me managing my MS is about living with it not fighting it. I try to live day to day with whatever it throws at me but it is not an angry fight. Some days are harder than others but, once you get used to it, MS is not the end of the world and sometimes brings good things too...I always try to find these good things though sometimes they're well hidden

 

Good luck with the Neuro, let us know how you get on

[skyblue7]

Hi Elliebean & welcome from us, tis my wife that has ppms, but wont go near a computer. Please can I suggest that you print off what you have written above & give it to the neuro tomorrow, ask him to read & push for a dx. This is what we did, after 2 years of being fobbed off & it worked. Very best of luck from Janet & Roger

[Michelle]

Hi Elliebean,

 

I was diagnosed with MS 3years ago, only to have that diagnosis revoked about a year ago. During that time I was told that I was borderline Lupus. Subsequent bloods showed no signs of Lupus.Phew! However, one of my g.p's thinks that my brain lesions are from an attack of SLE and I should have a brain biopsy,another thinks it's down to MS My neuro is keeping an open mind - knowing full well that his diagnosis of MS should never have been revoked. To be honest when it comes to getting a name for what ails you,it's hit and miss, and can depend on what neuro or hospital you attend. Plus most neuro's are very strict when it comes to the criteria for MS - meaning you have to fit their bill.

In practice this is all very well; although most of us here know that MS is a very individual disease.

 

Whatever the outcome of Monday's appointment please know that you are most welcome to hang out with us.

 

Regards

 

Michelle

[Kazzy]

Hi Elliebean

 

I am also a newie here and waiting for a dx. If you need advice and support you have come to the right place. Good luck with your appointment.

 

Kazzy

[Shazzy]

Hi there, I'm glad you posted the message, it allows me to understand other people's symptoms as well as my own. I too have never been dx. First I was told I had Menieres disease and then MAV (migraine aggrivated vertigo) because of the symptoms, but I'm not convinced either and I am getting more and more other complex symptoms. Good luck with you appt, it's awful not knowing isn't it? It makes you feel so alone.

 

Keep going, never give up.

 

Shazzy x

[Shirl]

Hello Elliebean and a warm to the forum. We are a mixed bunch - some with MS, some waiting to know, some who care for a person with MS and some who are interested for other reasons. What we all have in common is a willingness to share our highs, lows and in-betweens.

 

I think you fit into the category we've created called Limboland (link to search results on this site). I was in Limboland for over 11 years and in a poor state of health for a lot longer than that. It's a very long story (much of it recorded elsewhere on this site) but I eventually moved town 2 years ago and the change in Neurologist was like a whirlwind in my life. He believed me and set about fathoming my past medical history, contacting two hospitals for results of tests and letters etc. And he discovered the truth, that I'd been DXd in 1996, with a recorded suspicion on my notes 10 years before that. The lack of definitive results gave the previous Neuro the right to not only refuse me a DX but to treat me with disdain. It was my GP who kept me sane (and my family, of course).

 

I've previously written:

You will get there - this Neuro is not playing games. You also know, deep down, that even if he cannot commit to MS, it does not mean that is not what is wrong with you. Limboland is Hell - we know that. I still say it is a much under-researched state of being - maybe we should start a campaign.

What does this story mean to you?

Well, you've written:

I don't know whether I'm in denial, and whether I should fight harder for a firm dx as it's just getting worse.

and my advice is this:

• do not give up
  
• settle in your own mind what you believe
  
• speak openly to the Neuro about what you are experiencing and how it affects your life
  
• comply with as many of the Neuro's requests as you can but explain anything that worries you like you've done with LP
  
• take along a second pair of ears so that you don't have to remember everything the Neuro says yourself
  
• tell the Neuro that MS scares you but not knowing is far worse than that - you would face up to it if only you knew
  

I hope this will help a little bit. I have a passionate interest in those that linger in Limboland for years. It appals me that neurology is an area of medicine that 'gets away' with this and yet, having something like MS going on in your body can never be ignored. We all know what it's like, Elliebean, so please take heart and keep in touch. You may not have MS but, from what you've said, something is neurologically amiss and you deserve the Truth.

[Akorah]

welcome elliebean well what can i say.. not much really i think everyones already covered most of it. Hope u find this forum helpful as i did. BTW i am 37 and also have a 10 year old child but mines a daughter! Good luck tomorrow hope all goes ok !!!

[Silv]

Hi

I am a bit fearful that I might annoy some people by mentioning this, but I am grateful to the person who made me aware of the best thing, that's come out of my diagnosis. When I was really down and fearing the end of it all I stumbled across somebody's question, which was: What exactly is LDN? I had no idea then (not yet three months ago), but have read so much now, am on it and am sure, that many others would do themselves a favour if they tried it, too. Give yourself a chance and read about it. If nothing else, it's so interesting and brings so much hope. Just google LDN.

Silv

[Elliebean]

Thank you everyone for your welcome and replies

 

I've had a good look round the site today and read up on a few things. I feel a bit better about the appointment tomorrow now.

 

The LP is going to be a real sticking point if that comes up again - I had meningitis when I was 3 yo, and although I don't consciously remember it, I know I was given one with no aneasthetic and it took my mother and 7 nurses to pin me down. I had recurring nightmares through my childhood related to it, and a phobia of anyone even touching my back into adulthood, though I'm OK about it now. I always said I'd never be able to do it again unless my life depended on it! If it is suggested, I'll have to explain that it will take sedation at least for it to happen and they have to be really sure it's needed.

 

On the positve side I checked my neuro on a link from here and he is listed as a MS specialist - it's a different one to last time because my old one left so I've not seen him before.

 

Thanks again for the welcome, and I'll update after the appointment tomorrow xxx

[Hezza]

Good luck today. We'll be with you in spirit

[Michelle]

Yes! All the best.

 

Michelle

[Shirl]

Thinking about you in that appointment Elliebean - remember, conjuring up an image of the Neuro trying to walk a straight line while attired in his pants and vest is always a way to cope! Without telling him! And if his rubber hammer hurts your knees, ask if you can do it to him - with a little smile and laugh to go with it.

[Elliebean]

Well, that was a bit of a a waste of time. He was late to the clinic, and saw me for about 10 mins. He really rushed me through my history, said he didn't like to read other docs reports (more like didn't have time) and then didn't even do a full neuro exam.

 

He just asked me to walk to the door (literally 2 steps), looked in my eyes and checked my tracking, my reflexes just on my knee and ankles, and it took him 3 goes to even get a weak reaction on my right leg, and then stuck a needle along the bottom of my feet, again didn't even flinch on the right. And asked me to close my eyes and touch my nose, which I failed to do with one hand. Even the GP looked at more than that, more walking, more reflexes, more muscle strength tests etc

 

He then told me he saw no signs of any neuro disorder, no need to repeat the MRI and I'm probably just tired. Definately won't be seeing him again.

 

He did try a patronising comment that I "might be surprised to learn that people can have really very serious neuro episodes without doctors able to find any reason why"

 

I said I wasn't surpised at all, to which he spluttered "yes, well, it's not because we can't find the problem, it's because there often isn't any"

 

By this time I just felt like and couldn't wait to get out the door.

 

Complete waste of a 50 mile round trip.

 

I now understand the smiley

 

At least my old one was nice and did proper exams, and even went through my MRI and CT pics.

 

I'm not really sure where to go from here. I will probably wait and go back to my GP if I get another significant episode, and ask to see a different neuro. I don't have time to chase around after doctors when they don't bother to even read my records or do a proper exam - it's bad enough running around for tests I know will probably show nothing.

 

One thing that may get me back to the doc quicker is I can't move the right side of my face much at the moment (which mr neuro brushed off and didn't even check) - if that gets any worse vanity alone will do the trick!

 

Have to give it some thought. Thanks again for your support with this xxx

[Hezza]

Hi Elliebean,

So sorry you had such a rotten Neuro experience and glad to see that you clearly still have belief in yourself despite being treated in such a dismissive manner.

 

Don't feel you have to wait to talk to your GP about this - it would be perfectly reasonable to speak to him and ask for another referral.

 

Keep your chin up and keeping believing in yourself - the answers will come and while you wait we are here to support you

[Shirl]

Well done, Elliebean! You are the exemplar Limbolander. Faced with a stupid, lazy and patronising Neuro (do they clone them in med school?) you have taken the commendable attitude of 'seen him, done that, won't be repeating it'. You are so right and yet, many of us, myself included, do not stick up for ourselves so well. We labour under the (misguided) notion that 'they know best' and 'we must not rock the boat' - stiff upper lip and all that.

 

As Hezza says, you can see your GP NOW to report back and make your observations known. Then a referral to another Neuro can be instigated as your GP dearly supports you.

 

Meanwhile, if your own feelings start to wander along more negative lines, don't let them! Punch a few pillows and come back to read this post - you have acted with pride and dignity! for you!

[Shaz]

Hi Elliebean,

 

and sorry I am so late - wow - I am so proud of you - these arrogant lazy neuros need more than your bit of excellent sarcasm methinks!!

 

It's posts like yours that make me understand just how lucky I was with my own neuro appointments in the run up to my own diagnosis. I have one with a new neuro next month so hopefully he or she won't be anything like yours!

 

Shaz x

[MarkH147]

Hi Ellie,

 

Sorry that you have such a douchebag for a Neuro, I had a bad experience with LP when I had my initial episode in feb 08. Two students conducted it under supervision and managed to miss the spot 3 times before finally an anaesthetist took over and got the job done lol.

 

I hope you get things resolved

 

Nice to meet you

 

Mark x

[Gaynor]

Hi Elliebean,

 

I'm so late joining this thread, but wanted to say Hi and Welcome anyway.

 

You have been through so much, but keep the faith and don't doubt yourself in any way. I'd also say yes, go see another Neuro. I had to do the same and got a much better one second time round.

 

Gaynor