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Bob

Help needed please

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Bob

Hi

Last year I had no health problems. This year they have mounted up. I now know that all of them can be symptoms of MS and have an MRI arranged for the end of December. The trouble is that all the symptoms, such as multiple loud tinnitus noises, have left me dranied and no longer able to cope with the prospect of having MS. The health problems also contributed to my wife leaving me and to losing touch with a lot of friends and relationships with family members becoming strained. If I do have MS then I think it is a fast progressing kind, based on how many episodes of worsening symptoms Ive had in the last year. Ive always been a postive person but now I dont feel I have any hope left. I dont sleep and that is all I want to do. I would appreciate any kind of guidance. Thanks alot.

Bob

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Nick

Hi Bob,

Really sorry to hear of all your problems. Family members don't always understand these things and it can be very hard to make sense for yourself as to what is happening.

MS is very badly understood generally and simply having a diagnosis tells you very little about any 'progression' I understand that as yet you have no diagnosis but whatever the outcome you will always be welcome here. Some of us have a lot of experience of having to deal with the stress side of things (MS and stress don't make good partners)

Perhaps getting rid of that stress should be the first priority. This might at the moment seem an impossible task but sometimes simple things can help. Exercise is one possible option. Joining a local group and engaging in a suitable class may be very helpful. The trouble is your battery is empty and you feel that you can no longer keep up with all the pressures. In MS you get to learn the hard way that your energy levels have to be used wisely as the 'battery' is always only at a low level. Huge amounts of power are consumed by the brain worrying about a million things. That is a total waste. Building up from 'running on empty' takes time but it is often surprising when you change routine and allow the body to recover a bit, just how much new energy you can build up.

 

Hope that helps a bit

 

Nick

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Just another Warrior...........

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Bob

Hi Bob,

Really sorry to hear of all your problems. Family members don't always understand these things and it can be very hard to make sense for yourself as to what is happening.

MS is very badly understood generally and simply having a diagnosis tells you very little about any 'progression' I understand that as yet you have no diagnosis but whatever the outcome you will always be welcome here. Some of us have a lot of experience of having to deal with the stress side of things (MS and stress don't make good partners)

Perhaps getting rid of that stress should be the first priority. This might at the moment seem an impossible task but sometimes simple things can help. Exercise is one possible option. Joining a local group and engaging in a suitable class may be very helpful. The trouble is your battery is empty and you feel that you can no longer keep up with all the pressures. In MS you get to learn the hard way that your energy levels have to be used wisely as the 'battery' is always only at a low level. Huge amounts of power are consumed by the brain worrying about a million things. That is a total waste. Building up from 'running on empty' takes time but it is often surprising when you change routine and allow the body to recover a bit, just how much new energy you can build up.

 

Hope that helps a bit

 

Nick

Thanks Nick for your kind words and good advice. Hope you are doing OK.

Kind regards

Bob

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Skippysprite

Hi Bob

 

Welcome to the forum, I suppose you could say the club that no one would choose to join, but we are where we are.

 

I am sorry to hear things are difficult at this time for you, have a word with your GP as there is medication for symptoms that they can prescribe with or without a diagnosis.

 

Hang in there, it may not be ms, as there are lots of easily fixable problems that mimic ms, seeing a neurologist and having tests will help discover what the problem is, and hopefully fix it. Even if it turns out to be ms, it is not the end of the world, you can still have a very worthwhile life.

 

I know it's easier said than done, but try not to stress, as this can make symptoms worse, take one day at a time, and be kind to yourself.

 

Wishing you all the best for 2017.

 

Pam X

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Live for today.......never have regrets

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Bob

Hi Bob

 

Welcome to the forum, I suppose you could say the club that no one would choose to join, but we are where we are.

 

I am sorry to hear things are difficult at this time for you, have a word with your GP as there is medication for symptoms that they can prescribe with or without a diagnosis.

 

Hang in there, it may not be ms, as there are lots of easily fixable problems that mimic ms, seeing a neurologist and having tests will help discover what the problem is, and hopefully fix it. Even if it turns out to be ms, it is not the end of the world, you can still have a very worthwhile life.

 

I know it's easier said than done, but try not to stress, as this can make symptoms worse, take one day at a time, and be kind to yourself.

 

Wishing you all the best for 2017.

 

Pam X

Thanks Pam

Hope u are doing OK. I use to be positive but seem to have lost everything now. And am feeling incredibly sorry for myself and self-focussed. One thing that I might be able to do to salvage soemthing is finish my phd after a gap to come to terms with what is going on. But Ive started to think now that my cognitive skills will no longer be up to it. Is it posible to do a phd with MS or do I just need to forget about that dream? My brain really does not seem to work well atm but I know that could be extreme stress and depression. Thanks again Pam. tc

Bob

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Nick

Bob,

It is perfectly possible to do a phd with MS. The thing is that right now you are clearly super stressed. Conditions like MS mean that you have to ration yourself, putting a limit on all things that use energy, this includes both physical and mental. This is not to say that you can't do stuff. It simply implies that you have to work out your 'new limits' and stay within those boundaries. These boundaries change, so that sometimes you can do more, at other times less. Pretty tricky all this and the first priority is that stress. Give yourself some room and don't think too far ahead, concentrate on the stress first. Pam's spot on with her post.

 

Nick

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Just another Warrior...........

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Skippysprite

Hi Bob

 

I don't think there would be any problem with picking up and carrying on with your PhD. The best thing I would advise you to do, is listen to your body, and if it's telling you to rest, that is what you must do, no point in battling on, you cannot win.

 

Take one day at a time, as energy levels vary, what can appear to be a good morning, does not necessarily mean it will be a good afternoon, and vice versa, and if you can, kick stress out the window.

 

Wishing you well in persevering with your project.

 

Pam x

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Live for today.......never have regrets

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Bob

Hi Bob

 

I don't think there would be any problem with picking up and carrying on with your PhD. The best thing I would advise you to do, is listen to your body, and if it's telling you to rest, that is what you must do, no point in battling on, you cannot win.

 

Take one day at a time, as energy levels vary, what can appear to be a good morning, does not necessarily mean it will be a good afternoon, and vice versa, and if you can, kick stress out the window.

 

Wishing you well in persevering with your project.

 

Pam x

 

Thanks Pam. And apologies for the short reply. Im kind of in a dark place waiting to hear from dctor about MRI and sensing that it will be bad news.

Bobx

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Sleepy
Scully

Hello Bob,

 

Sorry to be late to the party as it were.

 

Having multiple symptoms, and then the waiting for a diagnosis can be stressful...the stress makes everything worse....the worsening symptoms make the stress worse....and round and round we go..

 

Yes, it can take a long time to get diagnosed, for me it was almost a whole year till that diagnosis came along, even following a positive MRI.....what I'm trying to say, is that almost all or us here have been through this dreadful period or watching and waiting, and worrying.

 

Even if this is MS, thousands of people lead perfectly normal lives with this uninvited ' guest', we learn to live with it, and basically, we just get on with life, despite, or maybe because of, the condition.

 

If this isn't it's likely to be fixed......in the wise words of Mark Twain..." I have spent most of my life worrying about things that never happened "

 

Stick with us here Bob, and we will do our very best to try and help, support and get you through...whatever this is.

 

Scully


Edited by Scully
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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Bob

Hello Bob,

 

Sorry to be late to the party as it were.

 

Having multiple symptoms, and then the waiting for a diagnosis can be stressful...the stress makes everything worse....the worsening symptoms make the stress worse....and round and round we go..

 

Yes, it can take a long time to get diagnosed, for me it was almost a whole year till that diagnosis came along, even following a positive MRI.....what I'm trying to say, is that almost all or us here have been through this dreadful period or watching and waiting, and worrying.

 

Even if this is MS, thousands of people lead perfectly normal lives with this uninvited ' guest', we learn to live with it, and basically, we just get on with life, despite, or maybe because of, the condition.

 

If this isn't it's likely to be fixed......in the wise words of Mark Twain..." I have spent most of my life worrying about things that never happened "

 

Stick with us here Bob, and we will do our very best to try and help, support and get you through...whatever this is.

 

Scully

 

Thanks scully.

Im going to get the results today. Im pretty terrified tbh. I find it hard to see any future atm. My head is just too damned noisy. I have at least 8 different noises which are too loud to mask. Ive also been such a pain in the alst six months that I think I have kind of alienated the family on who I would depend on for help if it is MS. I always loved life and had big plans and great hopes for the future. Now I just want it all to end. I would never have believed that I could feel that. I feel compltely broken.

Thanks again for your kind words.

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Nick

Bob,

 

Your description of how you are feeling right now is something a lot of us have faced. What is needed right now is extra support in understanding all that is happening, this can possibly come, in part, from this forum. Family members are often not the best at understanding things, and when you, yourself can't comprehend, just makes things more difficult. Please let us all know how you get on today and don't hesitate to ask questions. I'm very sure that you will get some good replies.

 

Nick

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Just another Warrior...........

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Procrastinating
Stumbler

Hi Bob,

 

Life is unpredictable for everyone. This fact is now being brought into focus for you. You just need to re-establish your sense of perspective so that you can re-establish your life's objectives and then see how these can best be achieved.

 

Life is full of curve-balls and you'll soon work out how you're going to play it. Just be patient with yourself.

 

:moonieman:

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John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Sleepy
Scully

Hello Bob,

 

Did you get you ur MRI results as planned?

 

We are here to help you. Whatever the outcome may be

 

Scully

 

 

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Bob

Hi Bob

 

I don't think there would be any problem with picking up and carrying on with your PhD. The best thing I would advise you to do, is listen to your body, and if it's telling you to rest, that is what you must do, no point in battling on, you cannot win.

 

Take one day at a time, as energy levels vary, what can appear to be a good morning, does not necessarily mean it will be a good afternoon, and vice versa, and if you can, kick stress out the window.

 

Wishing you well in persevering with your project.

 

Pam x

Hope you doing ok this morning Pam.

Thnaks again for your comments. Sounds like good advice. Though the problem atm I think is more motivation than physical energy. Im not sure which is which tbh and how to separate MS from say depression. The most intrusive things are the severe tinnitus and visual disturbances. Its like trying to write with someone playing instruments loudly but very badly next to you and they wont stop for a second and two sets of words on the screen when there should only be one. And part of me thinks "what is the p[oint of a phd or anytjhing come to that if my mind is going to make it impossible to do future research or teaching". But I guess that is the depression talking! At least I guess being a doctor might make medical dcotors pay more attention when I suggest this or that. So far, Ive kind of felt like they thought I was a bit of a hypochondriach, that is until the mRI results came back and they could see the impressive collection of lesions all over the place.

Sporry, didnt mean to rant and vent so much. But it has kind of helped.

Anyhow, thanks Pam. Take care and best wishes

Rupert (chose robert for anonymity, but deosnt seem to matter now!)

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Bob

Hi Bob,

 

Life is unpredictable for everyone. This fact is now being brought into focus for you. You just need to re-establish your sense of perspective so that you can re-establish your life's objectives and then see how these can best be achieved.

 

Life is full of curve-balls and you'll soon work out how you're going to play it. Just be patient with yourself.

 

:moonieman:

Thanks Stumbler. Hope you doing ok. Makes a lot of sense what you say. Though the last 12 months has felt more like life dropping a meteriorite on my head tahn pitching me a curve ball. Atm I dont feel like I have any fight left. But maybe that will change. idk. I still want to do stuff with my life. But I guess my plans for sporting glory might have to be abandoned! Maybe I can do the phd, though it will at bst scrape through (if I can get the external examiners to give some weight to the circumstances). Anyways, thanks again mate. tc. rupert

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Bob

Hello Bob,

 

Did you get you ur MRI results as planned?

 

We are here to help you. Whatever the outcome may be

 

Scully

Hi Scully

Thanks. I did get the results and they werent very good news. I'll post the details later. But Kind of dont want to write things down atm.

Thanks again. tc. Rupert

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Nick

Hang on in there Bob, lots of help here when you are ready. By the way even if it has nothing to do with MS this is still a great site for you.

 

Best from

 

Nick

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Just another Warrior...........

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Jennaxoxox

I know exactly how you feel. I was perfectly healthy in may, in november I was diagnosed with ms. I feel completely lost and basically have eaten the face off of everyone and am speaking to no one except my partner and a couple of friends. Whilst my family know about my condition I think they are struggling to wrap their heads round it all. I shouldn't lose my temper so frequently but right now I just can't help it. The uncertainty of this condition is just relentless. I can offer no words of wisdom I have none! But I know exactly where you are and came here to try and get myself out of this horrible place I have put myself in.

 

Wishing you well! I hope you get to the bottom of your mystery illness :-)

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Bob

Hang on in there Bob, lots of help here when you are ready. By the way even if it has nothing to do with MS this is still a great site for you.

 

Best from

 

Nick

Hi again Nick

Thanks.And hope u ok. Im sort of slowly coming to terms with what has happened, interspersed with complete hopelessness. I even looked up volunteering for MS society, so I guess that must be a positive sign. I saw opthamologist today and feel a bit sad that Im getting to know so many of the departments in the hospital. Anyways, thanks for all your help. TC mate

Rupert

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Bob

I know exactly how you feel. I was perfectly healthy in may, in november I was diagnosed with ms. I feel completely lost and basically have eaten the face off of everyone and am speaking to no one except my partner and a couple of friends. Whilst my family know about my condition I think they are struggling to wrap their heads round it all. I shouldn't lose my temper so frequently but right now I just can't help it. The uncertainty of this condition is just relentless. I can offer no words of wisdom I have none! But I know exactly where you are and came here to try and get myself out of this horrible place I have put myself in.

 

Wishing you well! I hope you get to the bottom of your mystery illness :-)

 

Thanks a lot for your message. Im sorry to hear that you too have been through the wringer. Hope u are doing as well as poss in the circs atm. Really dont blame yourslf for getting mad at ppl. Its only natural I think. I feel angry at ppl and most of all jealous. And when they tell me they are feeling bad because of a cold, I want to bop them on the nose (soemthing I have never done and would never do!). And I agree its the uncertainty which is hard. Ive developed hearing and eye problems in pretty quick success and am just waiting for my next sense to be hit. Thereagain, maybe the worst of it is over for now at least. I just dont know. Anyways, I hope you get as much support as you need and start to feel a bit better. Please keep in tocuh and tc.

Rupert

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Jennaxoxox

I'm in a better place now I have been diagnosed with depression and am receiving treatment. Are you any further on with getting a diagnosis? I am now dealing with more delightful effects of ms. I now have tremors and my hands buckle under any form of pressure :-/ tying buttons or laces and even lifting the kettle causes me extreme discomfort. The tremors cause me to rock like one of those extremely mentally ill people from girl interrupted and my hands shake so bad I struggle to put toothpaste on a toothbrush :-/.

 

This is by far the worst thing I'm dealing with as people can see! :O even on days when it's not so bad as soon as someone looks at me for slightly longer than I would consider normal it gets goes hay wire! This condition is literally ruining my life!

 

I'm extremely vain and work really hard to not draw any sort of attention to myself and this condition is making people stare. Which is quite literally my worst nightmare. Don't get me wrong no one ever says or mentions when I spill or drop things. but I know they notice and people that don't know about my condition wonder what's wrong :-(

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Nindancer

Hi, I understand the shock with an MS diagnosis completely. Tho married, I've always been Miss Independence. I ran my own business in financial services and was a part-time fitness instructor - after that one random fall I somehow ended up with a likely PPMS diagnosis within 5 months due to visiting an Osteopath who suspected something was going on. It was a chain reaction for me and I actually had no idea what was happening, it happened like this: Osteo wrote to my GP -> GP referred to spinal unit, saw them and scratched my head over some of the weird questions they asked -> spinal unit sent me for full spine MRI -> chain broke down as the spinal unit went very vague onme but they referred back to my GP eventually -> surgery panicked me, firstly because they were so nice (they didn't have a letter yet but looked online and could access my MRI) I was promised a doctor would contact me and secondly because they referred to neurology! My husban banned me from talking to Dr Google :wave3:

I was referred on to an eye doctor about 6 months prior to diagnosis and had been a gastro patient or 2 years before that - I suppose it was a case of joining the dots but truly, I had no idea or suspicion before that diagnosis.

So, that was all happening about 4 years ago and I'm now retired at the grand old age of 46 - it even now sounds ridiculous when I say it but truly, my capabilities are unrecognisable (my profile picture was something I could dead-lift into). I now need crutches to walk badly and often wear an eye-patch as I have nystagmus in both eyes.

Go easy on yourself, if it's anything like what you suspect, you'll need time to fully recover, accept and maybe grieve a little

Sonia x

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