Limbo..unclarity..worry

New diagnosis and before diagnosis
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Hi

maybe more of a rant and unload as i feel i have no one to really talk to or those i can talk to wont understand and react badly but i am one worried individual (41 yr old male)

it all start mid april with tinling in my right lower leg and then a bit on my right elbow and side of face. went to GP who picked on my blood pressure…the tingling would then mostly be on the right lower leg and happen pretty much daily , 10-20 times but only for 2-3 seconds generally when i had started walking after sitting. Ended up in A&E as my right leg seemed a bit swollen, neuro tests ok, bloods ok (not sure what they tested) and then a test and scan for DVT as i had taken a long haul flight just before but that was all clear. Potential issue with varicose veins so was referred to vascular surgeon who recommended treatment on my varicoise veins.

After another epiosode of feeling a bit unwell (no blurred vision or balance issues) ended up in A&E again who recommended a scan, unfortunately it was midnight and they could not do it then. another referral (private luckily as meant my GP could wash his hands). by now was mid may and had the tingling episodes (2-3 secs 10-15 times a day though think my record was 50-60 times) for every day maybe bar about a week. normal neuro examine but recommeded a MRI to check, it came back with 6 areas of “inflammation”. no comment or diagnosis made and then recommended a follow up in 6 months. Surely if there was any reasonable risk he would have said something ? I know MS is hard to diagnose but a professional has a duty of care to notify patients of risk, after all it is not as if I am not worried anyway.

Anyway tingling subsided a bit over june and first have of july to maybe 2 days in 3. then had my variocose veins operation in mid july and co-incidentally tingling stopped until it kind of returned 2 days ago but in a very muted form, almost a ltiny little pulse type feeling which unless you are very conscious you would miss. other symtoms i have had a tightness/pain near my right eye, sometimes my right arm feels heavy but there is no physical weakness and often my right shoulder seems a bit stiff but only notice it when i get undressed, a couple of occassions of pins and needles in fingers (both hands at different times) and probably the worse is ringling in the ears since 20 June which i really only mainly notice in a very quiet environment.

Of course have been to the GP who say nothing. All this worrying caused issues at home to extent my wife came with me to the GP and as they did not mention MS then she thinks they do not think I am at risk and I am been a worry guts. I was told I need to sort my anxiety out and was placed on meds for that and have been referred for cognitive behaviour therapy for anxiety to do with illness. I am having to keep stum at home as when i do have an outburst about my symptoms my wife says both the neuro consultant and GP did not mention MS and they would not be doing their job if they should have mentioned if somethign was at risk even if not definite. I have maybe not helped myself my doing a lot of internet surfing but this forum seems very sensible and real

I am perplexed with how i have been treated by the professionals surely they would have said something if they thought i was at risk but with the backside covering behaviour we tend to see in many areas of society now think the silent treatment might be there way of sitting on the fence. I just want to know if I am at some level of risk based on what they have seen afterall you go to these people for expertise but to be honest i came out feeling relieved nothing serious had been diagnosed but on reflection worried by the non commital nature.

any advice or guidance greatly appreciated. i am trying to get on with things and not worry and am going to have it out with my GP re “surely I would have been told if there was anything more than a remote risk of anything serious”.

Chris

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Hi Chris, I understand how you’re feeling but I think your neuro would need to have the results of more tests, over a longer period, to be able to give you a clear dx. If your first symptoms started in April, now is probably too soon for him to be positve about what the problem is, so at the moment you may be asking the impossible question.

Talk with your neuro about your worries & keep a diary of any new symptoms for future reference, record it with your GP too. Try to keep away from self dx, it’ll only cause you more anxiety.

Good luck

Rosina

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thanks Rosina - all good advice.

I am the worse at self diagnosis just worried as the symptoms seem to be piling up - a small dull type ache at times near jaw, upper teeth, itching sensations and some stifness in lower legs (knee downward) when i wake up, take a few steps, a few minutes and feel fine, clicks at times in my right knee, right ankle, some pain in my right shin, little red dots on my right knee .

Possible mitigating reasons for some of these things are I have been on citalaporam which i know can cause itching and at least had a bad right sinus when i had my MRI done, did also have some dental work done on the right side a few months ago and I was told my varicose vein op could cause some thightness across the shin area. I am just worried there are so many things that it seems like too many coincidences for it not to be something. I am making a record and see my GP in the next week

Chris

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An update from me…

Tingling has mildly returned to right lower leg/foot, more like a buzzing. not constant just occasional for a second or so then goes. My right leg below my knee does not feel right, really notice when i get out of bed or am not wearing trousers. Sometimes feels like an elastic band is round my upper shin.

new symptoms are:

  1. a rumbling stomach, did have some diaorrea but that has gone away

  2. Itching at times and some very subtle but dull achey pain not very strong around eyes, nose, cheeks and upper jaw, again very fleeting. Worried this is a prelude to a TN as I did have tingling/burning on my rihgt temple with my first real attack back in April.

  3. The itching and stomach symptoms by GP blamed on Citalaporam (I am on 40 MG dosage increased from 20mg in late August) which I am testing her theory by taking my self off the medication. Now for a week, noticed a small improvement more around itching not the stomach yet.

  4. Needing to urinate during the night, sometimes this might be to do with drinking more water in the evening (or alcohol) even though i go before bed not that I get to sleep with my tinnitus. seem to exist well on 4-5 hours sleep so at least the fatigue thing is not with me.

All this adds up to there must be something wrong or I am on a train to getting something wrong. If it is not MS what could all this be ?

On top of this all my family are telling me if they were worried after the 1st scan they would have said something so no one is even in the remote frame of mind of potentially expecting bad news after the next time. Just because I am not having severe symptoms no one really takes me seriously I am just a hypercondriact. Given my MRI was not “normal” felt the Neuro should have been more upfront. Sure I read somewhere with an abnormal MRI the risk of developing MS is quite high. Not sure if I have grounds for come back on him not that anything could be done. It has certainly wrecked my home life just hope I am wrong come the second scan in 6-8 weeks time. One thing is for sure I will get either a) signed off b) diagnosed with MS or something else c) get a clear prognosis, it is not MS yet but it could be so we need to monitor you. Unlike last time when we walked out being told it is all unexplained nothing I can say…

Sorry for the winge just need to let off steam and sure get some good insights from those far more informed than I am.

Chris

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Hi Chris,

Well, having studied law - including medical law - for quite some time, I don’t think it is part of the duty of care that a consultant has to inform you of everything that might OR might not happen. He might be of the view that to mention MS when it may yet turn out to be a one-off that never turns into MS would, itself, cause needless worry. And, as you say there would not be anything that could be done without a confirmed diagnosis anyway, so no, you would not have any redress for not being told about something that may never happen, and would not affect the treatment you receive NOW.

However, what seems to be lacking here (on both sides!) is communication. He may not be aware that MS has even crossed your mind as a possibility, so be reluctant to raise it, in case of causing false alarm in a patient who has never thought of it. He might think it best to keep quiet, unless or until he’s in a position to confirm it.

Now normally, I would not advocate a patient asking point blank: “Could this be MS?”, as, if they are not yet in a position where any abnormality has been found, they are more likely to earn themselves a label of: “hypochondria”. However, when you have already been identified as having six areas of brain inflammation, that changes things considerably, and it is not unreasonable to ask what the implications are, and mention that you have heard this is associated with increased risk of MS - ask honestly what the stats are.

I have heard various figures bandied about, but I don’t think my memory is reliable enough to quote them here. Also, statistics are just that: they still can’t tell you what will happen to you personally. Even if there is a high conversion rate to MS, it wouldn’t mean it will necessarily happen to you, so you’d still be left with: “It happens if it happens”.

I do not think six lesions is “nothing” (that’s how I started too, and at least one spine lesion - I did go on to be diagnosed). But only time will tell whether it is just a freak episode that is never repeated.

To be honest, I can’t remember exactly when, on my own route to diagnosis, the actual words were first mentioned. I think I realised quite early on what I was being investigated for, as a quick Google of my consultant’s name revealed he was an MS specialist, so I didn’t think I’d have ended up with him unless it was looking more than possible.

I got a “probable” diagnosis (which is a formal category of diagnosis in its own right) at about the stage you are now. BUT I think that was heavily influenced by the fact I could narrate quite a long history of previous episodes - classic relapse and remission. I think, if I’d had only a relatively short history of symptoms - just the one clear episode - he’d have been more cautious about even a “probable” diagnosis, as there would have been a possibility it would remain a one-off.

My self-reported previous relapses could not be counted towards a confirmed diagnosis, as they had not been clinically verified by anyone - let alone a neurologist - as I had not bothered going to the doctor. So I still had to wait for further evidence (a six-month follow-up scan). But my consultant certainly believed my reports of previous episodes, and that influenced how likely he thought it was to happen again. Obviously, if a patient can identify it’s happened a few times already, the chances of it being a one-off are slim, even if there’s no proof of what they’re saying. Most patients don’t lie, although they might be mistaken, which is why it can’t be used as proof for diagnosis.

So I was in the strange position of everyone accepting I’d had multiple episodes, but the official position still being that I’d had only one - because it was the only one that had been independently verified.

Your relationship with your consultant is - or should be - a two-way thing. If you have questions or concerns that remain unaddressed - perhaps because he thinks you wouldn’t want to know “worst case” - don’t be afraid to ask.

Tina

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Thanks Tina -all very sensible words.

I can see why nothing might have been said so do not necessarily feel their is a legal crusade here more one of openness and if there is something wrong with me, working with someone I trust. I guess I was maybe too pleased that nothing adverse was being told directly to more directly ask what potential implications could be at that stage. I trusted him to say a potential prognosis with 6 areas of inflammation even with a caveat it could be nothing. Maybe my expectations were too high and I expect some proactivity not reactivity, do not tell me I have hit a wall when it is obvious that has happened.

I am finding my GP just to be a listening post and no more than that. Given the follow scan should be done within 2 months I do not see the point of following up now there is little to be gained. I am going to be worried anyway unless clinically he tells me the last scan was really not a concern which I find hard to believe as why would.

To me one of the worse side impacts of all this was my wife thinks as nothing was said, no further tests ordered that there is really not going to be an issue. This of course excludes the fact that some “symptoms” have come and others have reduced/not re-occured since the first scan. She is of the view is they would tell you if there was something potentially wrong or a risk of it being something potentially serious in the future. This has caused me a lot of personal issues as I look like the hypercondriact to her as nobody medical has said anything to have her believe otherwise. Other members of my family think the same as everyones experience of medical matters is if there is potentially an issue they will gets things done rather than the sit and wait process I know I have spent too much time on Google but do realise that averages are a misleading this with such a complex condition. It potentially all seems a bit dramatic and will be highly devastating to those close to me if we go from a casual nothing specific to consultation to 6 months later with a more serious diagnosis or prognosis.

Also no other conditions have really even been tested for or discussed. I saw that over 100 things can potentially mimic MS type symptoms so I do maintain some hope this might all be not an issue just with time and symptoms my hope seems to be waning week to week :frowning:

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Hi again Chris,

Well, you bring up another important reason he may not have mentioned MS.

Once you have confirmed patches of brain inflammation, it does narrow it down a bit from the 100-odd things that can cause similar symptoms, but perhaps, for whatever reason, the type of inflammation he saw did not look like MS? As a lay person, I’m quite hazy on the exact differences (left to my own devices, I couldn’t even find my own lesions on MRI, after I’d already been shown where they were!), but to an expert, MS lesions have a characteristic look, in terms of both shape, and where in the brain they occur.

Maybe the inflammation you had doesn’t match this classic MS appearance, and that was why he was wary of mentioning it, because there are too many things that don’t fit? The only way of finding out would be to ask him.

GPs are really not qualified to talk about MS, so I guess yours is erring on the side of caution by remaining non-committal, although I appreciate that can be frustrating. We’ve had a few cases here of the opposite, where people came home believing they’d been diagnosed by a GP, when in fact, that is not possible (only a specialist neurologist can diagnose). So the GP had jumped the gun, and said something they’re not qualified to (they may even have been right, but it doesn’t alter that they should not be saying it - not without making clear theirs is not the last word, anyway).

The only thing I wonder is what has been said between the neurologist and the GP. I am lucky, in that I always get copies of anything my neuro writes to my GP. This should be standard practice now, although some rather “old school” consultants still don’t seem to do it.

So IF your neuro has written to your GP, going into more detail than he has done with you, you should be entitled to see that letter. Gone are the days when doctors could have a whole private correspondence about a patient, without him or her ever being expected to see it at all. So presumably your neuro has written something to your doctor about his findings, conclusions, suspicions, or whatever?

Having said that, mine can take about six weeks to get round to it, so I told my GP in person of my diagnosis, before she’d ever got the letter, and she was quite shocked. So your GP may know more than you do, but I wouldn’t guarantee it.

It must be very difficult with close family reasoning: “It must be nothing, or they would have said.” All you can do is explain that brain inflammation isn’t normal, at any age - you’re not “out of the woods” yet, but all you can do is wait and see. On the other hand, I appreciate you may not want to worry family, by correcting their impression that lack of diagnosis means: “All clear”.

Had exactly the same problem with a friend of mine, whose response to the six brain lesions was: “Oh, you mustn’t worry, I’m sure it’s nothing!”

Nothing? How the heck did I get six holes in my brain from: “nothing”? I am not sure to this day whether she genuinely thought brain lesions were nothing to worry about, or was trying to protect both me and herself from something she didn’t want to think about. Could there be an element of that with your wife? i.e. she knows, deep down, it’s not really “nothing”, but thinks she’s supporting you by staying upbeat?

Looking back (it’s over four years now), I think my friend was probably trying to support me in the only way she knew how: trying to play down my fears (and hers). Unfortunately, it did backfire badly, as I had the impression my worries were dismissed, so I know exactly where you’re coming from. I can only suggest your wife may be trying to lift your spirits, but it doesn’t mean she isn’t worried. Surely she knows you wouldn’t have to go back, or have further scans, if they were completely satisfied about everything? She must know they’re still concerned about something?

Tina

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Hello Tina

Again wise words - I understand enough that not all areas of inflammation either in location or form mean MS. From the letter to my GP which I did eventually see it called 1 as a concern area in terms of location. My GP did not offer any reason of the why and I did not ask. What I am learning and you are confirming to be is ask questions don not assume you will be told everything especially in an uncertain situation. I guess I trusted the experts to give me a clear warts and all version but I can be the one who can help to get clarification if I want it and to question and challenge in a constructive way.

It could well be many of the areas have been there for a while. I cannot really think of any major symptoms over the years where I think back and say umm…maybe this is where it all started. I did have shingles as a child and wonder if that might have left it’s mark in someway.

On the family side I think it is a mixture of my wife’s way of dealing with a threatening and life impacting situation but also a bit of lets call it medical ignorance (like I had but have began to question more with time) of if there is a risk of something surely we would be told. We know from our exchange of thoughts above that is not such a black and white scenario. I know she has also been told my someone that oh brain inflammation is not that abnormal which probably sounds like a bit of misinformation. My neuro did say that my scan would not be surprising if I was 60 (+20 years on me) and smoked (which I only did mildly for ~ 5 years in my 20s) whereas my wife’s interpretation was it was not like a scan of someone who is 60 year old smoker (i.e. that would be worse)…again subtle differences on hearing and communication. She interpretated the whole come back and have a scan as purely precautionary (which it might well be based on a more detailed understanding of the first scan which I do not have and did not ask!) and a tick in the box to cover the consultants backside. I went privately so there could even be a thing of let’s check this to be sure medically and i can make a bit more money while I am at it. I know the whole diagnosis decision though bound by clinical criteria maybe can be marginally influenced by not wanting to cause issues with statistics and healthcare funding given the general NHS budget challenges!

That said if it is her way of dealing with it I have to respect that. I know she wants this all to end and life to continue on a normal path. We have a 6 year old daughter so have to consider that, she has experienced too many mum and dad arguments as it is the last few months. Us having continual go in circle conversations on interpretation is fruitless. I did ponder going back to my consultant for clarity but with the rescan now relatively close there is no harm now to wait and I need to manage my mood and behaviour appropriately to consider others (and myself as worry will gain me nothing)!

Chris

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Chris, I would worry a bit about taking yourself off this medication without medical advice. It sounds from your posts that you are having a difficult time of it just now. It might not be the best moment to take yourself off a medication that ought to be helping to regulate your mood and deal with the troubling things that life is throwing at you.

Alison

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thanks for the advice Alison. I can definitely see where you are coming from.

You are right it is difficult at the moment for all the reasons I have mentioned but really symptoms and home life. On the plus side I am testing the theory of my GP she seemed confident those couple of symptoms (itching and stomach issues) were related to the meds. She did say to me what do I think it is. That is where to be honest i want some guidance from her not for me to telling her. I realise MS and it’s complexity is beyond many GPs knowledge or experience. I have obviously googled all this and put 2 and 2 to mean they could be MS symptoms but it seems that most things can maybe in some way be linked to MS so it is possible you get other symptoms from other things. My worry is it took c2 weeks after increasing the dose before they appeared and i want to see if they go away by taking away. I am worried about the itching as i read it could be a prelude to a TN. I did have burning pain once on my first attack 6 months ago and have a lot of crawling sensations near my eye brow/temple.

On the downside since coming off the meds (now 9 days) i at times feel a bit teary when i am on my own thinking about things. I will watch this as if this becomes tough or the symptoms do not go away then it is better to have something that is maybe aiding my coping. I see my GP again in 2 weeks

Chris

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One suggestion: I assume that your wife knows that you have taken yourself off citalopram? Ask her to look out for you running into trouble with low mood and feeling overwhelmed and unable to cope. We are not always the best at recognising these things ourselves (sad experience speaking here). If you’re running into trouble, bring forward that GP appt and tell the GP what’s been happening.

Alison

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Hi Chris,

Sorry to hear you are having a tough time, it’s no picnic hey? I’m pretty much in the same position. Tingling in different parts of my body, this happened over four years ago. I was told it was a trapped nerve, so thought no more about it and it went away on its own. This time last year it started again :frowning: my gp sent me off to a neurologist who said it’s probably nothing, left it up to me to decide if I wanted an mri and told me to get on with my life. I left it for two months and decided to go for the scan where they found areas of inflammation in my brain and spine :-(. I haven’t been diagnosed, the neurologist wants to see me in six months and work it out from there. It’s like dangling on a very fragile thread. My husband insists that I will be fine and I’ve nothing to worry about, though Doctor Google, darn him, tells a different story. It’s hard to keep going for everybody else and keep smiling and stay positive, I know that! I’ve come a long way this year and can finally feel my light bulb begin to flicker again. I’ve decided whatever to keep going and stay strong for my nine year old boy, he needs me! So what will be, will be. It’s hard though. Have rambled on, my first post too! Your post just struck a cord with me. Try and take each moment and day at a time, you’ll be great.

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