Just a general limboland story really

New diagnosis and before diagnosis
1

Ok, so I have one week and a day till I see the neuro again and (hopefully) get to know exactly what is wrong with me, and in the meantime I have been getting steadily worse over the past few months :frowning:

It all started with Optic Neuritis in the right eye, followed by the left eye, followed by jerking right arm, tremors in right arm, numbness of right side of face, constant twitches all over - neck, abdomen, both legs, both arms, pins and needles in right side, blah blah blah.

I have been off work now since February - before the symptoms started I was caring for my brother in law who was terminally ill (he died beginning of April). I am pretty sure that my job has been given to someone else now (work as a personal assistant to an author) as boss cant be waiting around for me to get better, and needs someone daily.

The situation with me today is that I live on Tramadol painkillers, Carbamazapine, propranalol and amiltriptylene. My right foot now turns outwards and so walking is tough unless I am holding onto someone or using a stick (indoors only as I am not comfortable using a stick outside). I have fallen so many times over the past few months that I am permanently covered in bruises; I also walk into doors and walls. I have the most horrible internal tremor when I do even the smallest of things (like wash up), the fatigue means I am in bed by 10 and wake up at gone 10, and sleep in the afternoon for a couple of hours. My hands hurt… like really hurt alot most of the time and I get shooting pains from my elbows to my fingers, and from my knees to my feet. My right foot (the dodgy one) seems to either drag along or lift up too high when I am walking. The twitches/jerks are still constant and I feel so embarrassed not to be able to even sign my name on a prescription because of them. I cant speak eloquently any more as by the time I have got mid way through a sentence, I have forgotten what I was saying. I constantly forget the words for general everyday items, and often end up saying the wrong word such as ‘put the milk back in the tv’. I have had MRIs of spine and brain, VEP, and oh so many blood tests! And I see my GP every other week so my life is a constant round of hospital and doctors.

So to summarise, I am a total wreck most of the time :frowning:

But on the plus side, my left eyesight is back to normal, and my right eyesight is good enough for me to drive again (after 4 months of not driving). And I have found out who my true friends are. People I have been friends with for over 30 years do not contact me, and yet people I havent known for too long have been great.

I am scared of seeing the neuro next week, and yet I am looking forward to it. I have nightmares at least once a week that she tells me I have syphilis/AIDS/terminal cancer/Parkinsons/Motor Neurone etc. and yet I NEED to know why my body is acting this way.

My fiance is unbelieveably amazing. He is supportive, kind, understanding and thoughtful, but we dont live together though I see him Friday to Sunday each week. My children (adults) are good, but they still dont realise everything that is going on. I have 4 children 28, 26, 21 and 17, and my 21 yr old son tells me I need to prepare myself for an MS diagnosis, and that he feels I am not prepared at all even though the GP and neuro have told me they think I have MS. But I dont want to worry my kids and tell them everything; particularly my 17 yr daughter as it is just not fair to ‘burden’ her.

Sorry for the long story; this has taken me ages as I constantly type the wrong word and my hands hurt so much!

I just need to get things off my chest I think and this is the only ‘safe’ place to do that without worrying anyone any more than they are already.

Paula xx

2

Oh to top it all off, my Dad is in hospital with pneumonia and my poor Mum is run ragged caring for him with no help from me for the past 6 months!

3

Massive hugs Paula. And neuros don’t see why we are in such a rush for a diagnosis? They may know a lot but they don’t understand anything :frowning: I am absolutely sure that getting on the right meds will make the world of difference. I know we’ve talked about this before, but what I mean most about the word “right” is “right for you.” Please make sure that you don’t leave that office next week without getting help for your symptoms - your current meds are simply not working :frowning: Please also start using a stick outside. It will be very much safer and will help others to be considerate (which will also make your life easier). I hope your dad is soon on the mend. Do not feel guilty about not being able to help your mum - I’m sure if the situation was reversed you wouldn’t mind at all so don’t be harder on yourself than you would be on others. Loads of good luck that you finally get an answer (and meds that help) next week! Karen x

4

Hiya Paula

Yes here is the perfect place to get it all out. Seeing things in black and white is probably the first time you have ‘voiced’ the reality of where you are with life at the moment.

I would agree with Karen that you definately need the right meds and dose, and a referral to physio who will be able to help you with mobilising more safely.Living in pain always drags you down.

On the hand front mine are so stiff it really hampers doing everyday tasks, and as a gardener proves fatal to anything delicate as they tend to get squashed or neglected as my hands tire so easily.

OT spoke to a neuro rehab nurse who said gloves that people wear for oedema seem to work but she doesnt know why…they are brill. Not stylish at all,they look like things the queen wears so obviously are not worn out but they make a huge difference,once used to them.

Only problem is they arent fingerless but Ot are going to order some. May be something to consider as they really help me.

I hope your dad is on the mend soon.

Pip

5

Thank you both. Think sometimes I need a little sympathy maybe… does anyone else understand that?

Karen, I finally have the GP appointment tomorrow so will be speaking to her about meds as well as neuro next week.

I know sometimes I really do need to use a stick outside, and I really dont know what is stopping me either to be honest, not like I am excessively vain or anything. I will try Karen.

Pip. You are so right about putting it all down in black and white makes it all seem alot more real. I will be asking for a physio referral tomo at GPs and next week at neuros, so hopefully that will done as soon as possible as walking just a few steps hurts my legs. Also, I was attempting to do a little bit in the garden today and failed miserably, so I think you are amazing to carry on with that. I will be asking to see an OT as well - didnt even think of that to be honest! So thank you for that Pip.

I know we all like to have a good old moan sometimes, but thank you both - it is so uplifting to know that people are here to listen to me. I am feeling quite p*ssed off with it all just now.

The worse thing is that when I phoned my Mum to tell her I wasnt feeling good today and so wouldnt be going to the hospital this afternoon, my Mum straight away said ‘well please just look after you, Dad wouldnt want you going there not feeling well as he would feel really bad about that’. Makes me feel guilty for not being well enough to go! I know how silly it is, but I am the one who takes them shopping, library etc etc., my Mum can drive but I dont like her to as she is the worst driver ever!

Anyway, hopefully havent turned this into yet another essay… thank you xxxx

6

Whoops… it is another essay :frowning: xx

7

Now you are on a roll its an ideal time to get everything off your chest and they are not essays its how you feel and the need to be properly understood.

Our invisible symptoms are the worst and try as they might families and friends do not understand the consequences of them on our everyday living.

Parents will always put their childs wellbeing before their own…however old you are…so no need to feel guilty at all.

I have a 17yr old daughter and while we never talk about my ms,I generally think the idea of not wanting to burden them ends up causing more stress for them as they see changes in us,but dont know where it will all end.

In my case she probably dreads the future as my mom had ms and was in a very bad state for years. Do you ever ask yours what they think or know about your condition and if they have any worries?

I kind of think that is a good thing to do…I just havent done it myself.

Pip

8

Hi again Pip.

I agree with you about the invisible signs, for me its the pain, the internal tremor, the fatigue and the constant twitches (not quite so invisible I know!). I find it hard to tell people about how I really feel anyway. and if anyone asks me I usually say ‘Im fine’. So I am my own worse enemy really.

I plan to sit down with all my 4 kids next week and explain to them everything the neuro has says - be it MS or something else. I will ask them what they think and if they have any worries, and will include my 17yr old too. She has always been the baby of the family and I still do find it difficult to accept that she is nearly an adult! For me she has stuck at about age 8! Poor girl :smiley:

My fiance and I plan to go away on Thursday (I also have opthalmology next week) for a few days so we can spend some time together to either celebrate or commiserate so I am looking forward to that.

Pxx

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Hi again Pip.

I agree with you about the invisible signs, for me its the pain, the internal tremor, the fatigue and the constant twitches (not quite so invisible I know!). I find it hard to tell people about how I really feel anyway. and if anyone asks me I usually say ‘Im fine’. So I am my own worse enemy really.

I plan to sit down with all my 4 kids next week and explain to them everything the neuro has says - be it MS or something else. I will ask them what they think and if they have any worries, and will include my 17yr old too. She has always been the baby of the family and I still do find it difficult to accept that she is nearly an adult! For me she has stuck at about age 8! Poor girl :smiley:

My fiance and I plan to go away on Thursday (I also have opthalmology next week) for a few days so we can spend some time together to either celebrate or commiserate so I am looking forward to that.

Pxx

10

You are another day closer to your neuro appt,and your break so hang in there.

I’m glad you plan to talk to the kids I think thats a really good thing…wish I could.

Have you thought of downloading/ordering the ms essentials info so that they have information to read in their own time as it might be a bit of an overload when you tell them. I say that because I got the memory and thinking one to try and explain my brain farts to my lot as they get more and more annoyed with me.

Hope today is a gud un

Pip

11

Hi Pip

One week to go and the nerves are kicking in a little now.

My kids have all read everything on the internet there is about MS so they are well informed. My 21 year old son is even running a half marathon for MS at the end of September (I think). Luckily my kids can finish my sentences so they kind of get it when I dont remember anything and forget what I am saying.

Having spent the whole of yesterday at home, I am going to pick my daughter up from school at 1, and we are going food shopping, then visiting my Dad in hospital. I WILL be up for it even if it means I am knackered tomorrow. Tomorrow I have my GP appointment and I will be discussing pain meds amongst other things, so hopefully I will be pain free very soon :smiley:

Thanks Pip xxxx

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((((((massive massive massive hugs)))))))

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Hi Paula

Firstly let me sasy I hope your dads on the mend.

It really sounds like you need some hellp and answers, but doctors don’t see our struggles with everyday life. I really hope you get the help you need from them.

Massive hugs, not long now. Let us know how you get on.

Reemz

X

14

Hi Paula, Dont worry about writing essays, its good to unload. I know exactly where your coming from, one part of you is terrified you have MS, Cancer, some other degenerative neuro disorder etc etc but the other side is so tired of feeling so bad and have your body falling apart around you that any diagnosis whatever it is would be a relief. Hope your GP is more sympathetic than mine and can at least sort your pain out, good luck Dave

15

Thanks Jules and Reemz

I have managed the food shopping with my daughter and I will be visiting my Dad very soon. He is a little better so thank you all for asking xxx

16

Thank you Dave

I am scared but also will be relieved too I suppose.

My GP is amazing, so I am lucky I know. The first GP I saw with all this actually made the neuro referral asking the neuro to look at me because I was showing “symptoms of tremor” - this came on the day I walked into the surgery with my right arm jerking uncontrollably and I was finding it really hard to keep it at my side!! Changed my GP though and this one is amazing… I tend to go in there though and cry (and I am not an emotional person)! She is kind and supportive which is all I want. I am hoping I get some different pain meds tomo as the Tramadol is just not working any more and I could take them like sweets now with no affect.

I would advise anyone to see a different GP in their practice as there are some great ones out there!

I hope you are feeling well today Dave

Paulaxx