Fed up

New diagnosis and before diagnosis
1

Hi,

I haven’t posted for a while, apart from replying to a few threads, but could really use some support at the moment.

I’m still waiting for a diagnosis, my GP tells me they are still going on the ‘working diagnosis of ms’ but because of this cyst on my brain, (the latest on this is ‘it appears benign’) its been a bit more complicated, and long winded, especialy as the specialist dealing with this particular aspect works in the next county, and communication between the various parties involved in my care is precarious to say the least. I get an occassional letter from my original neuro, two or three lines saying he’ll write to me again after such and such, which he does, saying the same! I haven’t seen him since December. I’m glad they’re being thorough/cautious, but I could do with some explanations/reasurance, anything!

Anyway, I’m feeling really crap at the moment. I seem to have had one thing after the other to deal with, I’m on my third dose of antibiotics for a uti that won’t shift, had repeated, agonising back/rib spasms, burning/cold/weak legs, virtigo, internal buzzin, face/jaw/gum pain, blurry, washed out vision, dreadfull fatigue, and my left hand keeps locking up. I’v lost my appetite - unheard of - and my throat keep twitching/clicking. I’ve got up opthalmolgy and VEP appointments coming up.

The problem is, I’m trying to deal with this so as to create as little impact on my nearest and dearest, my two teenage kids, my lovely hubbie, my elderly mum etc. Kids and mum don’t know what’s suspected, but they are becoming increasingly concerned and suspicious, and I’m feeling bad that I can’t do much for them as I’d like, as I used to do. I tell them its migraine, menopause, bad back etc, but hate lying, but really don’t want them to know much more. Mums not well, and needs support, and I feel I’m letting her down. My husband is wonderfull, but still not back to 100% after his heart attack last year, and I see him getting so tired working 12/13 hour days and can’t ‘share’ it all with him. He’s no idea just how bad I feel, or how frightened. We do talk, I just don’t tell him everything. I don’t want to cause him more stress. I’m no good at asking for help, and not a natural ‘sharer’.

I’m really struggling at the moment, and can feel depression creeping in. I don’t know how to cope, my GP is good, but is limited to what he can/will prescribe as ‘he still doesn’t know what he’s dealing with’. I can’t take ssri’s as had a severe reaction, and have develpoed a strange intolerance to opiate painkillers. I not keen on amytriptalene as it didn’t agree with me years ago, and at the moment, that’s all he can offer, apart from low dose co-codamol, and naproxen. I’m in pain, knackered, tearfull, and feeling truly sorry for myself.

Sorry for the moan, I’m not expecting solutions, just wanted to ofload somewhere.

2

Hi, i have been going through the "diagnosing " bit for the last year. i have had the MRI which shows the white plaques on my brain, i have also had the lumbar puncture which has proved negative, i now have to go to hospital for 3 days to have a steroid drip to see if i respond, the consultant said he is confused because i have no reflexes in my elbows, knees and ankles. My legs are so weak now they barely hold me up and my wife is now having to push me around in a wheelchair, i am struggling very badly with the stairs, thank god we have a downstairs loo. I am also diabetic and the two illnesses together are making me feel crap. My arms ache, i keep dropping things, my memory is terrible and when i need to pee i have to go straight away. I trip over my words, my face is constantly itchy and i wish someone would just say, you have this or that, here is what to expect and yes or no you will won’t get better…simples!!

3

What a difficult situation - no wonder you needed to offload somewhere.

Best wishes.

4

You’re not alone, I know that I and several others, feel exactly the same as you do.

I find this site very helpful even if I mostly just come on to read that I’m not going crazy, and other people are in the same position.

Big hugs and I hope you get some answers soon :slight_smile:

5

You’re not alone, I know that I and several others, feel exactly the same as you do.

I find this site very helpful even if I mostly just come on to read that I’m not going crazy, and other people are in the same position.

Big hugs and I hope you get some answers soon :slight_smile:

6

Hugs to you Honey, You are stuck between a rock and a hard place you poor love. It’s no wonder that your feeling down, and there is no shame in that. Limbo land is the most difficult thing to deal with, and perhaps talking to someone would help, maybe a councillor if you didn’t want to go down the anti depressant route. Talk to your gp about how your feeling. Is there a branch of the MSS near you, I found them helpful when I was going through diagnosis. Thinking of you, Chis

7

Sounds like you’re having a thoroughly miserable time

Can the GP not get the OK to let you try something like gabapentin or pregabalin and maybe something for those spasms (e.g. baclofen)? It’s all very well the neuros being thorough and therefore taking a long time to come up with answers, but they shouldn’t be leaving you without help for your symptoms surely???

One thing that I hope you will take some time to consider is letting your family in on the secret. It is almost impossible to cope with all this on your own, and I can’t imagine that the added burden of hiding things and keeping secrets is doing you any good whatsoever. The other side of this is that, as you say, they already know something’s wrong - telling them that you are being investigated for MS might actually be a relief for them because they might be imagining far worse! (At least with MS, you will be around for a very very long time!)

I really hope that things get better very soon.

Karen x

8

Ah Hunny, I know exectly how you feel. I’ve been feeling exectly the same for about two months. I just feel that I’m not coping and I 'm not. I try not to offload too much on my parents as they have their own health issues. My dad has emphysema and my mum has Atrial fibrillation. My dad is in hospital at the moment. I didn’t tell anyone for months. I have had a lot of other stuff to deal with and I feel like I’m coming away at the seams. I’ve been getting very angry with people and I think that this is the fear. I feel really embarassed after an outburst and I am so ashamed. One moment I am raging the next I am crying.

I have a therapist. It has really helped but i haven’t seen her much in the last month and I think it shows. Just having someone to talk too and having someone to offload to is really important. We do CBT, which is really benefitial, it helps you to step back and to rationalise your feelings. I think, that like you and probably most people in our position, we have a lot of fear. A fear of what is going to happen. A fear of the unknown. I would really suggest opening up to someone. It’s not feasible to cope with this all on your own. I’m sure your parents and friends would understand. Mine certainly did, even though I didn’t want to share it with them. They were very grateful that I did.

I wish you all the best and if I could, I would give you a very, very large hug. We all need them.

Take care,

Adrian x

9

Thank you all for your kind words and hugs.

I’ve been at the opthalmologists for the best part of three hours this morning, my right eye has improved, my left deteriorated, which is what I expected. I’ve lost a whole swathe of my peripheral vision in my left eye, and a fair bit of colour too.

I’ve done CBT before, found it very good actually, I’m just not sure at the moment how much help it would be, and wether I’ve got the energy quite frankly at the mo.

Karen, I will ask the GP for something for the nerve pain in particular, I must try to be more assertive! I do have diazepam which helps with the spasms a bit, when combined with the cocodamol, but the combination also knocks me out! Ok at night, but not much good during the day. My neurologist is a nice bloke too, but boy, is he evasive. Its not reassuring to be kept so much in the dark.

I’m really hoping I get some feedback from the VEP next week, and maybe then I’ll bite the bullet and talk to the kids and mum, I just feel I need something a bit concrete to justify myself, and indeed as much factual information to be able to explain and answer rationally. If I’m coping and in control, they will find it easier I think? I don’t know, maybe i’m a control freak/need to loosen up.

Anyway, thank you all for your kindness xxx

10

Hi Hunny You’ve had loads of great advice which I don’t think I can improve on, so I just wanted to lend you my support and say that I hope you see some light at the end of the tunnel and that you start to feel better soon. Please try to get one of the neuropathic painkillers that Karen mentioned. They will probably make no end of difference. Try to share with your family too - you will feel a massive relief. Thinking of you. Teresa xx

11

Just wanted to be another shoulder you can lean on.

Take care

Pip

12

Hi Hunny, Just wanted to check your ok? Bit worried coz I read a lot but answer few, and I know you don’t post lightly. Thinking of you, Chis

13

Hi Hunny,

You do sound down basically I go along with Karen, see your gp and ask for something stronger to help you through this. Have you got a close friend that you can talk to, I mean really talk to, it would help to be able to off load on a close friend who understands. Sending ((((HUGS))))

Janet

x

14

Thank you so much to everyone who’s responded. Special thanks to you Chis, you always do, and its greatly appreciated.

I had my dear friend up yesterday for a couple of hours after the hospital and let off a bit of steam, I guess I’m just struggling with the uncertainty of it all. I want to protect my familly, we’ve all had quite a bit to deal with over the past few years, and we could all do with a period of calm and normality, and I feel so damned guilty causing any of them them any worry at all. And I hate myself for not being able to fix it. I even feel guilty about not being able to walk my dog very much. I took him up the lane this morning, but I’ve ended up stinging nettled, as I’m veering off to the left so much I couldn’t keep out of the hedge! had to give up and come home.

Never mind, this too will pass. I will try and get an appointment with the doc. The sun’s shining, there’s a rare blue sky, maybe a sit in the garden for a bit, and try to forget all I could/should be doing!

15

Oh Hunny, I really do feel for you hun. I wish I could send you a big fluffy hug, but all I can do is add my support to that of everyone else who has posted.

I know that you have had a really tough time and are trying to be supportive to everyone else, but doing that is maybe coming at too high a price and the stress of it all is almost certainly making your symptoms worse.

On a practical level, it doesn’t seem right that you haven’t seen your neuro since last year. Even if there is no news, a face to face with him would give you a chance to voice your fears and maybe ask some questions. It’s all too easy for them to leave us in limbo and sometimes they need a prod. He may even be able to prescribe some meds for your symptoms. Please give his secretary a call and see if they can get you in and don’t be afraid to tell her just how badly this is affecting you.

Amitryptyline is a tricyclic antidepressant which can also be used for treatment of pain but it is not the only one of its type. I was prescribed Nortryptilene a few years ago and it was very effective for my anxiety. Some people can be more sensitive than others to certain meds so it may well be worth asking your GP to start you on one but at a low dose and see how it goes. If he can referr you for counselling too, then so much the better.

From what you’ve said, your family know that something’s going on. It may be that they’re more worried than you realise because you’re not saying anything about it (look how being in limbo affects us) but at some point you’re going to have to tell them something hun. And you really can’t do this alone. Whatever your dx turns out to be, the timings never going to be perfect and they may surprise you. I’m sure they’d rather know the truth than see you fall apart trying to hide it and if you do fall apart, you’re not going to be able to be supportive to anyone.

I’m sorry this has been such a long one and I hope I haven’t offended you in any way. You know you’re always welcome to get in touch. Be good to yourself!

Mags xx

16

Hi Mags

You haven’t offended me at all! I did ring the neuro’s sec a couple of weeks ago, and she asked me to bear with them a bit longer, so I’ll give it a week or two after the VEP next week then chase them up again.

Its my son’s and mum’s birthday’s next week, so nows not the time for revelations, but I know I’m delaying the inevitable, and will ahve to come clean at some point, just waiting on something concrete to bck it up with.

Been to the docs this morning, another variety of antibiotics, as to add insult to injury, not only has my uti not cleared up yet, I’ve also had a big psoriasis flare up on my hand, and my finger and thumb has become infected. Saw a different, new GP, and she’s said if I’m no better in a week she wants to admit me, so I won’t be rushing back to her! Hopefully the infection’s will clear up, and I’ll be able to get a grip.

Hope you’re doing OK, take care too xxxx

17

Offload all you need to :slight_smile: ((((big hugs))))

xx

18

Hi Hunny, you`re carrying one hell of a huge load on your shoulders.

When our kids are young, we scurry around doing everything a mum feels she should be doing. A mum isn`t supposed to be poorly, or complain, or nag or anything that disrupts the running of a busy household.

But you know what? Thats total horsepoo!!!! Once a mum realises that and starts to take better care of herself, getting kids and hubby to take a share of the chores, a mum might just be able to take a little me time` once in a while.

You`re still trying to juggle a thousand spinning plates…admirable, commendable, but not wise!

You are welcome to off load your worries here, but we can`t come round and do the washing up, the ironing, the shopping.

get someone told, eh? You know it makes sense.

luv Pollx.

sorry if I sound too bossy!

19

Oh blimey Hunny - what a difficult time you’re going through. I can’t add anything to what anyone else has said but big big hugs to you

Dx