@ruggermad

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ruggermad

Anxiety and paranoia..........

Hi everyone, just posting here to see if anybody can help give me any tips or experiences on trying to deal with anxiety which I believe has been brought on by my situation of being in limbo. I unfortunately do not have a definitive MS diagnosis yet (if ever I do get one) and the two neuros who I have seen this year have both said that although MS does look 99% likely, it is in their words "mild and not very active". This means that I do not qualify for DMDs, which I probably wouldn't take at this stage anyway and I feel like I am being left alone untill I have another episode. My neuro has told me that unless I have another "disabling attack" I will remain with the current diagnosis. I have bad days, where I get blurred vision and other numbness over parts of my body and pretty bad brain fog, but its not what I would call disabling and therefore do not report it. I have in the past, but have always been told to just to go and see my GP about it. I know that I should take the "mild diagnosis" as good news, but I do feel as though this last 13 months has been a complete nightmare for me. I have had to tell the DVLA, my employer and other close friends about my "possible" condition and deep down inside I feel very vulnerable in and around other people. I have, become very paranoid and am constantly thinking that people are talking about me or always looking at me. I feel as people are laughing at me. I have come to the point that I struggle to go out nowadays as I fear people stareing at me. I keep feeling as though I must look differently nowadays and something about me must have changed, as i never used to get these looks untill recently. It is driving my wife nuts and is making her very upset as my actions have started to become very strange. I have been looking at old photos of myself and comparing them to ones now, just to see if I can pinpoint the reason why I think people are stareing. My family tell me I look no different to how I used to look and that whenever they have been out with me, they have never noticed anybody stareing. All of this has also led to me suffering from insomnia and I am currently taking sleeping tablets to try to help me get to sleep at night. I don't think that I have slept for more that 4 hours in about two months now. My mind won't switch off and I keep trying to think of solutions for this problem. I have been off wrok now for two weeks and my employer is starting to get fed up with me. As I am not definate MS yet, I don't think I have the disabilltiy law protection which other diagnosed MSers get and this worries me. By the way, up untill now, I have never, ever suffered form any mentally realted illness or lack of sleep whatsoever. I have always been a really strong person who normally shrugs off negative comments and I have never became a hermit in my own home afraid to go out. This whole episode came on gradually over the last couple of months and I am hopeing that it will do one soon. I will be thankful of any advice or to hear any experiences from others if they have suffered a simillar thing. Thank you

Stumbler

@Stumbler

First things first, have a read through this website:- http://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms . A further episode, which could confirm the diagnosis, does NOT have to be disabling. It is just the presence of new symptoms. Second, see your Doctor again and explain honestly what's been going on in your life, the paranoia and lack of sleep. It sounds like there may be a need for some anti-depressant type help. No, I'm not suggesting that you start a life of pill-popping. You might just need a bit of help at this point in time. As for the paranoia, MS can be referred to as the invisible condition. There can be no outwardly visible signs! Now, MS isn't something that the general public know much about, so they may be wondering why you mention suspected MS and you're not in a wheelchair! Well, MS doesn't mean a wheelchair! Now, having brought to your attention what is and isn't a relapse, I would recommend that you start keeping a diary of symptoms that may, or may not, be associated with your suspected MS. This would give your Neuro a bit of a clinical history to help his diagnostic process. Limboland is never a good place, as you never know where you may be going. But, you do need the support of the medical professionals, who may be a bit reticent in helping, due to other considerations, e.g. budgets. All you can do is keep asking the questions to try and obtain a diagnosis. For this, you need to be assertive, but always remain polite. I'll assume that you've had an MRI scan of your brain, and possibly your spine. Any other tests?

ruggermad

@ruggermad

Hi Stumbler Thanks for the reply. I've kept a symptom list and produced it to the neuro, he dismissed most of the list stating that the issues I recorded over 6 months were mainly sensory and not enough to warrant classing as a relapse. As for the anti depressants, I would rather not have to take them if i'm honest. I hope that some of the paranoia that I have is down to lack of sleep and will pass in time, once my sleeping returns to normal. I have recently had a lumbar puncture which showed O bands, MRI with lesions on brain and spine, I am at the moment waiting for the results of recent electrical nerve tests and also waiting for an MRI scan with contrast to come through the door. Hopefully, I might get some answers soon. I'm just hopeing that I can keep hold of my job and get over this.

Stumbler

@Stumbler

I don't believe that you need to have a definite diagnosis to be protected by the Equality Act 2010. So, your employers shouldn't discriminate against you, especially not if you're still doing the job! But, that's the situation in the UK and I fear you may be further afield, like the other side of the world! You may want to consider enrolling into this group for some local knowledge, https://shift.ms/groups/australians-with-ms/ . With those tests, you seem to be ticking all of the boxes to have MS diagnosed. Whilst none of us wanted the diagnosis, it does give us a platform to move our lives forward from. It's a shame that there isn't a condition called "Singular Sclerosis" as this would avoid the need for a second episode. Just hang in there and be patient. And, look after your wife. You may be being investigated for possible MS, but your wife is feeling, and will feel, the pain too. Take care.

Rhymenocerous

@Rhymenocerous

Hi, To add to Stumbler's information, you can already be diagnosed with Clinically Isolated Syndrome, or CIS, which, for the sake of employment, can be considered a medical issue in its own right at the moment, in particular because you still suffer from symptoms associated with it. So you should be able to get a letter from your Neuro or GP to show your manager or HR. The fact you have oligochlonol banding and lesions on your MRI is pretty darn good evidence. If you have another scan separated in time by no more than 2 years and that shows the lesion in a different location, then that is definitely criteria for DMDs. Can I ask how many scans have you had? Also, to let you know that the symptom that enabled me to go to stronger drug was intense tingling climbing up my body From my feet to my chest over a few weeks. Finally, keep an 'eye' out for the l'hermittes symptom, as this is due to lesions in the neck and is a 'sensory' symptom that neuros know to be a relapse if it presents itself for the first time. It's a sharp electric shock type symptom when you bend your chin towards your chest - 'easy' one to tick, if you know what I mean ;) Best wishes, Mel

cameron

@cameron

I hesitate to say this but it sounds as though your neuro is one of the foot-draggers who does not believe wholeheartedly in early aggressive treatment. As I recall it, the 'disabling attack' phrase is straight from the NICE guidelines. If you read the Barts and London blog on this site, you'll see that their neuros' approach is very, very different. They condemn the NICE guidelines as being out of touch with what's happening on the ground with patients in their clinics. It IS important to get on treatment before too much damage sets in and there's clearly discretion practised by neuros in how they interpret symptoms. In addition to what @Stumbler says, I think you should acquaint yourself with the 'No Evidence of Disease Activity' (NEDA) philosophy as described on that blog. Also read up about the DMDs. Then you may have a clearer idea of whether you're being unnecessarily fobbed off - and if that's the case, you will need to get a second opinion. That would be where the support of your GP would be necessary. To illustrate the point: I have just been offered a second-line drug (I've been on Copaxone for 10 years) by my neuro, and as I understand it, the NICE guidelines are the same for transfer onto second-line from first as they are for starting DMDs. My only symptom has been sensory feelings in feet and hands, but because they were NEW - not serious, but not there before, he has offered me a stronger drug. He is very pro-active, he's an MS specialist and he conducts clinical research..... how good are your guys? Secondly, your anxiety/paranoia sounds to me entirely par for the course. Horrible and inevitable until such time as you are in receipt of the med support you need. My anti-depressant is my best friend and has got me (quote from GP) 'thinking the right way'. Don't feel guilty about this. You're not over-reacting. xx

ruggermad

@ruggermad

Hi Mel The l'hermittes sign was one of my first symptoms which I reported to the GP about 4 years ago. This was followed by various different episodes of numbness, etc over a period of about 4 years. It wasn't until I presented with stroke like symtpoms and my whole right arm went numb, when I was sent for an MRI. I have had a twitchy painful left eye which went on and became blurry about 6 months ago but this was dismissed as not being optic neuritis. I have only had the one MRI so far and that was 12 months ago, I am lookng to go private and have one done soon hopefully. Thanks

Rhymenocerous

@Rhymenocerous

Hi Ruggermad, so I say this hesitantly, not being a neuro an' all...but it seems that your neuros are adhering to the book without taking the whole story, and not realising or agreeing with recent research that is showing that even 'mild' (or so he calls it, I'm not convinced in the slightest) MS is well worth treating as soon as possible - I second Cameron's recommendation of the St Barts blog: http://multiple-sclerosis-research.blogspot.co.uk/2012/02/education-diagnosis-of-ms.html http://multiple-sclerosis-research.blogspot.co.uk/2013/09/is-earlier-diagnosis-important.html Note that diagnosis can be made on clinical grounds alone, and also that in some circumstances (not sure how rare) dissemination in space and time can be established by a single scan In order to diagnose MS, they do need to be sure it is not another disease that can show itself with similar symptoms - see http://multiple-sclerosis-research.blogspot.co.uk/2013/12/clinic-speak-are-you-sure-you-have-ms.html However, a few points: 1. they are 99% sure that it is MS - I would ask what is preventing them from making this diagnosis? Is there a symptom or test result that does not fit? - You now have an MRI and a OCB test, both of which will give the neuro an indication that it is or is not MS - these results have specific patterns indicative of MS. You also have a clinical finding of a numb right arm, and evidence of going to your GP for L'herimittes. 2. considering that you have told them of symptoms which began a whole 4 years ago, and during which your GP saw you, do they have a reason for not taking these episodes into account? - they are clinical observations that have been seen or at the very least recorded by a GP. Is it because they are worried about putting their neck on the line? 3. Was the numbness you experienced located in different parts of your body, and at a different time from your L'herimittes at any stage? If so, then this will be (as far as my understanding goes) attributed to lesions in different areas, separated by a period of time, which is a marker of at least 2 separate relapses, so ticks the clinical observation box. 4. Did you see any medical professionals in the past 4 years about the numbness? and did you see them at different times? 5. Who diagnosed your blurry eye as not optic neuritis? and why? - I assume there was no other explanation involved,so I would question how the person came to this conclusion - see http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/eyes-and-sight/optic-neuritis for diagnosis 6. It may well be that your neurologist wants to see your separate relapses on an MRI. I would strongly recommend in this case that you get him to do an MRI the next time you get numbness anywhere that had previously disappeared for say a month. If he is hesitant to do this, apart from questioning why, then if you are lucky enough to be able to, I would personally consider getting a private scan done through another private neuro....this is how I managed to get 2 MRIs showing separate relapses in such a short space of time. OR another neuro may not feel the need to have this info before diagnosis. 7. Bear in mind that the 2 test results you are waiting for - electrical nerve tests and also waiting for an MRI scan with contrast - would give your neuro the information he needs, so this may well be resolved for you at your next appointment to get your results, I shall cross my fingers and thumbs for you. It may well be that he is investigating all he can, by ordering all of these tests, but that he is not one of the more socially-adept neuros so is bad at / does not see the point of informing the patient at all stages. Hope that helps, Mel

cameron

@cameron

Another example of what I have described: when I went into hospital for tests *which led to diagnosis), I remember when the head honcho came to see me with his entourage. He told his registrars that my case illustrated the clinical difficulty of differentiating between a relapse which was continuing (although on the wane) and a fresh one which had started. But, as he told his team, he was going to consider my symptoms as a new relapse because that would entitle me to start DMDs. Why hasn't your neuro done the same?

Jonesbear

@Jonesbear

Hi @ ruggermad I've read your post and i can relate to a lot of what you've said,although I have been diagnosed with ms it took a change of Gp to actually be seen at a hospital and be given tests instead of being fobbed off with a trapped nerve in my spine and then in my neck when I told of numbness in my face and neck and mouth and eventually my left arm. I've had numerous blood tests because my Gp thought I might be anaemic with vitamin b12 deficiency but that test and all others came back normal including my vitamin d test. I was then sent for an electrical nerve ending test which I never actually got told the result of that,then I was sent for a MRI scan and told I had lesions on my brain and I was to go for a lumber puncture which confirmed I had ms, since then I've been back to see my neuro once he did refer me to a urologist for a bladder a bladder issue of which my appointment was cancelled by the hospital,I did ask my neuro other questions about symptoms but he just said that he was only there to diagnose me. I still haven't been contacted by a ms nurse or have been able to contact one myself so I can completely sympathise with you being in limboland because that's pretty much where I feel i am right now. I do suffer with some paranoia mainly when I'm talking and I can't get the words out that I want to say or I forget what I'm saying half way through a sentence,but my main issue is my lack of confidence especially at work I used to be bloody good at my job and I'm not bragging or being big headed but now I do struggle sometimes with my concentration,balance and when I read my tape measure I read a completely different size to what I'm looking at which I find very frustrating. When I read what other people have written to you about neuro's I can't help but wonder what my neuro is doing or what he isn't doing because in all honesty I can't even see the point of going to see him because he's been of no use to me whatsoever since my DX,so you are definitely not alone in limboland especially on here which is where I've found the most help especially when it comes to symptoms of which I've got an app on my phone that I use called symtrac which I find very useful. Sorry about the rant earlier the frustration builds up sometimes and I can't help but get it off my chest. Good luck in the future Jonesbear.

Stumbler

@Stumbler

@Jonesbear , you can use this website to find your local services:- http://www.mstrust.org.uk/information/services/ Look up your MS Nurse(s) and see if you can self-refer. :wink:

Jonesbear

@Jonesbear

Thanks @ stumbler. Again.