feeling devastated

New diagnosis and before diagnosis
1

Hi all

This will be brief as Im kind of lost for words atm.

I had the results of an MRI yesterday and have been told that there are multiple lesions consistent with demylination. Im assuming that this means probable MS? It would explain all the crazy symptoms which have developed over the last 12 months, including 8 tinnitus noises which are too loud to mask, hearing loss, eyesight problems etc etc.

I know this might sound self-pitying but I feel completely broken. I was happily married last year, finishing off my phd, seeing friends on a Friday night, and in pretty much perfect health. Now Im divorced, have had to give up on the phd, have lost my job and my home, and am staying with relatives in wales, who understandably have got sick of me going on about how i ill I feel. I think I have developed severe depression and suicidal ideation. Basically, I cant stand the constant noises, flashing lights, pains etc. And I can see no way back to a normal life. I am also consumed with guilt about maybe having caused the MS through my own stupidity.

I don’t really know what to do now. I loved peace and now I have noises blasting in my head, I loved to think and argue but now I think my cognitive skills are rapidly declining. Its like the essense of me is draining away. I use to hav a good sense of humour, and be pretty compassionate. Now I just think of me and would not recognise a joke if it smacked me in the mouth.

I guess Im looking to find out if I can get through this and if so how. I always use to be positive about life but now I just want this to end. I know that is the wrong attitude but I cant seem to get past it.

Thanks for any help that you can give and thanks for the forum,

Kind regards

Robert

2

Hi Robert

I understand fully your feelings as I have received similar news a week before Christmas. News like this is such a sudden shock and takes time to assimilate. You clearly have had a very difficult time lately. What follow up have you been given, what support do you have at home? I have found people on this forum to be very helpful and understanding, able to give good advice and support and a good starting point.

3

Hi KT

Thanks for your reply and good suggestions. Im sorry to hear that you have been through the mill as well and hope u are doing as well possible in the circs. I think the follow up is a spinal MRI and maybe a lumber puncture. Ive got some support but things are very strained atm and my friends are in London. Im trying to stay positive but the symptoms ar getting worse so quickly that it is kind of frightening. I had wanted to try and finish the phd but I just dont know if its possible now. It would be so much work down the drain.

Have you been to any MS support groups and if so did you find it useful? I hope u are getting support from your family and friends. Please feel free to PM any time. To me it seems to be helping to be in touch with ppl in a similar boat, albeit a boat that none of us would have chosen to be in.

Best wishes

Bob

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Spare yourself the labour of trying to think your way through this. The time for that will come, but this probably isn’t it. From my own experience, I think getting through the period after dx is simply a matter of battening down the emotional hatches and weathering the storm as best you can.

If you can, do sow the seed in the back of you mind that things will look less black and that you and your life will reassert themselves (all true). Never mind how absurd that sounds - just tuck the thought away somewhere. For now, just hang on in there - this is tough stuff and there is no easy way except to give it time.

Alison

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5

hi bob

tinnitus can have a really bad effect on people’s ability to cope.

have you seen a specialist about it?

your low mood needs to be dealt with asap.

there is no shame in taking an anti depressant.

my gp prescribed citalopram as i was going through diagnosis.

do tell your gp what you have told us.

once you have come to terms with your diagnosis, you will be able to start putting your life back together.

maybe you can even resume your phd.

carole x

6

Hi, something you said, that no-one else has picked on , really needs to be sorted in an effort to, hopefully, help you feel a bit better.

It’s the idea that you may have caused yourself to get MS!! Now lad, there is no way you can have done that!

MS happens when your body goes against itself. It isn’t caused by smoking, drinking, eating a poor diet, nor flying to the moon! I’m not meaning to sound flippant, but I just want you to know that your body, like all of us here, has gone haywire!

A lot of bad things have happened, which would be enough by themselves, to knock the strongest of us for six!

You need to tackle each thing by itself, as it’s all so overwhelming. At the mo, maybe your health and diagnosis when it comes, should take priority. You probably won’t have the strength to do anything else.

So many of us have all felt that stomach twisting horror, when our lives are turned upside down and inside out by a serious health problem.

You sound a very sensible, educated man, with a good head for logic and reasoning. I say this because of the way you write about how you feel you are probably depressed.

Please see your GP and explain everything to him or her, the way you have to us.

I’m hoping you can work your way through this quagmire…But it will take time.

I’ve had a similar condition to PPMS for nigh on 20 years.

But there still is a worthwhile life to be lived. Honestly!

Love pollsx

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Quite right, Poll and well said. Getting MS is sheer bald-headed bad luck, that’s all. No sin of omission of commission on the part of the lucky host is involved!

A

x

8

Hi Alison

Hope u are doing ok. Thanks for your kind and helpful words and apologies for this brief reply. I will post a proper reply and say hello again soon. Im just not feeling 100% atm and cant really think what to say to ppl. In the past, the problem was that I could not stop talking or writing!

Anyways, thanks again and tc.

Rupert (not sure why I used Bob).

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9

Hi Alison

Thanks for your kind words and good advice. I hope things are OK with u. I will try and write a proper response and say a proper hello later. Im a little bit in shock atm and cant think what to say to ppl, apart from pouring out a river of self-pity! Anyways, take care and thanks again.

Rupert

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10

Hi Carole

Thanks for your reply and I hope u are doing OK. I just realised that I replied twice to Alison and havent replied to you! Maybe the dreaded brain fog giving me an early drenching! My brain feels like it has a mind of its own atm, if that makes sense. I will probably find that I have replied to you as well. If so, apologies. I’ll try and write a proper response later on.

Take care carole and thanks.

Rupert

11

Hi polls

Ive read and enjoyed a few of your posts in the last few days and can see how much help u have provided to forum members, including now me of course. So, thanks.

I think I caused my MS because of vitamin D deficiency. I stayed in an awlful lot to avoid getting more tinnitus, as I live in an RAF training zone in west wales and the jets fly low over the house. Worst spot in the UK if you have tinnitus. Anyways, in trying to avoid being bitten on the arse by more tinnitus, Ive allowed a bloody great grissly to sneak up and grab me by the neck. That’s how it seems. Also I changed my diet at the time and inadvertently removed vitamin D from it. And so I pretty much had zero vitamin D for months.

I know there is an association between vit D and MS and know that I could have contributed to my MS. Just like I contributed to the tinnitus. I think I might be having a nervous break down atm, as almost literally all I can think about is how I destroyed my life. And I keep going back in time in my mind and imagine myself having sat outside in the sun and then it clicks in that I didnt do this and I kind of suffer the whole thing again. And round and round. The GP has not been much help, but prescribed some valium, which I know is not a long term solution. I didnt use to have mental health problems and was never depressed in my life but now I could win international most depressed person competitions.

Ive been told that I can submit my work to date for the phd and they might be able to judge me on that (taking account of the MS etc). But my brain is so screwed atm (maybe depression is part of this) that I cant even work out where I have put the work I have done so far. I found one article I had published in a law journal a few months back. But I couldnt really understand it when I read it. Not being able to understand your own article seemed a bit scarry. The brain scan seemed to suggest lesions in areas which i think have to do with higher functions, though I wasnt paying much attention at the time. Part of me worries that its no longer me here typing.

Sorry Im whittering. thanks again Pol and I hope you are doing ok.

Bst wishes

Rupert

12

There does seem to be an association of some sort between MS and low Vit D, but I do not think that the relationship is well-understood or that is is believed to be simple.

Where you spent your childhood and how much UV exposure you got then does seem to have a stronger association with how susceptible you are to developing MS than does UV exposure in adulthood. As I understand it, if you spent your childhood in cloudy Northern Ireland or Scotland and then moved to sunny climes as young adult, your risk of getting MS would remain as depressingly high as if you had just stayed on in Belfast or Aberdeen.

Certainly many people with MS have low Vitamin D and are advised to supplement it as needed. But I am not at all sure that anyone knows for definite whether low Vitamin D has a direct role in causing MS, or whether (for instance) that is a red herring and, in fact, MS (or other things that tend towards susceptibility to MS) just happens to cause low Vit D!

One thing’s for sure: you haven’t given yourself MS by staying indoors to avoid aircraft noise.

Alison

13

Hi Rupert,

I was brought up in Cornwall until I left in my early twenties. Hours of sunlight, summer and winter, didn’t stop me from getting MS. Vit D isn’t as important as some think. Even month of birth, by which those born Dec - Apl are much more likely to develop MS isn’t foolproof, I was born in August.

John

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Hi Rupert again. I’ve had a bad day… Actually cried for the first time in ages! Having carer worries, but my daughter has visited today and came up with a helpful idea, so we’re trying it out.

But I’ve always got time to lend an ear where I can.

It cheers me when someone says my words have helped them. Makes me feel useful again!

Have you thought about trying a bit of CBT? Not done so myself, but read here about many who have and it’s helped.

Give the valium a chance and you never know, it might help.

Pollsx

15

Thanks polls. Sorry that you had a bad day. Hope the helpful idea works out.

Trouble is that valium can make tinnitus worse and mine is already louder as hell. But Im on waiting list for CBT. So that might come through in a few years time! Im pursuing the phd reasonable adjustment route, and so I guess Im not quite all out of hope yet.

Best wishes

Ruprt

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Thaks for your reply John. Hope u doing ok.

Best wishes
rupert

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Where there’s life there’s hope!

Pollsx

18

Hi Rupert

What I have learned about auto-immune disorders (and I by no means have any kind of a scientific mind), is that there are a pile of causes. A variety of circumstances need to be present in order for any given AI disease to present itself. These can include environment, genetics, gender, nutrition, amongst others. This can include things that people have mentioned such as vitamin D uptake at a young age, and also in vitro aspects. Then if you are the right age, with all the other factors present, then a given AI condition may present itself.

But, this argument alone is not the final answer either, since identical twins brought up both together and apart, might have a greater propensity to the same AI disorder, but it’s not 100% guaranteed that they’ll get it.

Shared genetics definitely plays a part, but it’s not the whole answer. Vitamin deficiency also is not the whole answer. Environment can also be implicated.

Gender can play a part, many more women than men get MS. The most common age to have a first appearance of MS is between 30 and 40.

So, if you were born and brought up in Scotland, and are female aged between 30 and 40 and have a parent or sibling with MS, then your chances of getting MS are higher than the average. But it doesn’t mean you will get it.

Personally, I come from a family which is plagued by auto-immune diseases. I am the only one with MS. But I am the only female of 4 siblings. My mother has psoriasis, and now psoriatic arthritis. One of her sisters also has psoriasis and I have an aunt and a cousin with thyroid disease. I got MS at the age of 30. I have also had thyroid disease (again strikes more females than males), one of my brothers has coeliac disease, another has ME and psoriasis. One brother thus far has no AI disease. But there was nothing I or my brothers or even my mother could have done to prevent our diseases (except not have children but at this point that would require a time machine!)

There is absolutely nothing an individual can blame themselves for when they get a diagnosis of MS or any other AI disease. It’s really not like lung cancer and cigarettes. And yet people still smoke.

Sue

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19

Hi Bob. Having supported my husband through very severe depression several years ago some of your brain fog and confusion may be due to the depression rather then the MS. I think you need to deal with the depression because while ever you have that you will never be able to deal positively with the MS. Depression will affect everything you do and destroy you far quicker and more then the MS ever will.

Hopefully people on this forum will give you the confidence and courage to fight through your feelings at the moment until you see things more positively.

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Thanks for your reply Sue. and apologies for brief reply to it. Am off to opthamology soon and feeling a bit down that Im getting to know so many departments in the hospital! Hope u doing OK. Take care

Rupert