Forum

So scared

Hi everyone, I’ve just signed up. I’m looking for some hope some positive. My story started nearly 4 weeks ago. I didn’t feel “right”, I struggled with getting my words out and had some tingling in arms and legs and my left side of face shifted a bit, it was number in my cheek and my tongue wasn’t as able as normal. Just writing this I can feel my arms and chest sort of coursing with adrenaline, not sure. I’ve been reading your posts for a few weeks wondering whether to seek help from you. Anyway, an mri has shown 3 patches of inflammation. Lumbar puncture has come back normal but still waiting for bands. L.p. left me with a crippling headache which hasn’t helped recently but I feel so utterly scared. I have a Neuro appt next Fri, but not sure if we will find much more out. I’m 41, married with my 2 children. I have been so anxious often wondering about MND, and other terrible things. My life a month ago seemed so carefree, not a worry. Now I feel trapped and waiting for the worst. I’ve googled searching for hope but come across more doom ms wise. I’ve changed my diet this last week, cut out sugar, smoking, and find myself on a fish, veg and fruit diet. My husband has been great but im finding it hard to be positive, and im sorry if my moaning and groaning is insulting to ms sufferers who do deal with it and live their live. I’m scared of not being there for my children, a burden on my husband. I suppose I’m in the limboland of not knowing and by the sounds of it it’s not a quick diagnosis. I’ve googled what else it could be but everything else sounds awful, I was hoping it was just a big stress migraine, this year has been stressful. Well thank you for reading this I appreciate it x

Hello Gingerdog

Well, you are certainly not alone with your worry and fear. It’s not surprising you feel so scared, from being a normal healthy woman to feeling this frightened is enough to make anyone tremble in their boots.

Obviously, no one on here can tell you that it’s MS or not MS, or anything else. Of course, from your perspective (and from many peoples perspective), it’s better to be diagnosed with MS than MND. And best of all to be diagnosed with neither, maybe a vitamin deficiency or something easily correctable.

And I’m sure that you offend absolutely no one here by wishing that you have neither. And hopefully nothing serious.

What I do suggest is that you stop googling. Dr Google is not just a bad doctor, he’s actually bad for your health. It won’t make a scrap of difference to you if you’ve looked up the symptoms of scary diseases and will instead just frighten you even more.

At least you have an appointment next week so can address these fears to the neurologist. And you should do so. Tell him/her what you fear and see what they have to say. Hopefully your mind will be put at rest. And if not, then perhaps you will then be able to deal with it.

You’d be surprised what a human can deal with when they have to.

But meanwhile, we’ll hope with you that next Friday is going to be the end of your fears. And come back here for whatever support you need in the meantime, or after that appointment. We do understand that no one wants MS, so you won’t offend by saying that you don’t want it. Neither do I!

Sue

1 Like

What you have wrote sounds like me july 2015 exactly ! I am now 2.5 years down the line and apart from a few bits and bobs doing amazingly well, took a lot to get my head around things but now its not the first thought in a morning and the last before bed its sometimes days i dont think about it all, you will feel better i promise x

1 Like

Thank you to both, i appreciate you both taking the time. Hopefully friday will bring some positive news. Im pretty sure the stress and anxiety of this situation makes me overly sensitive to any physical symptoms i have. Thanks x

Dear Gingerdog, Of course i cannot say what might be causing your current symptoms however it sounds as though the services are discovering things quickly. This is positive. Sorry too, that you had a headache following your lumbar puncture…mine (laid out flat - horrendous) lasted about two weeks but is finally clearing now. This morning I stopped taking codine…bliss.

I can hear the fear in your post and I was similarly riddled with it. My GP told me that my MRI suggested MS back in June, but I am still awaiting full neurologist confirmation. When I was told this, I couldn’t stop crying and feared the very worst. Things are calmer now and I try not to google or read too much. I did however buy the book Overcoming MS by George Jenilik and although we cannot promote things here, it has given me some control, whilst I wait for results. I too gave changed my diet, try to exercise and am learning to meditate.

Most importantly though I found strength in my family knowing. We share our fears. Work have given me time off and six counselling sessions have been helpful. This forum is supportive and friends have been kindly. My cognitive stuff has shaken me but I have found that writing all things down, is truly helpful.

I have found the last few months particularly rocky but I try to find one thing to celebrate each day.

Be kind to yourself. Warmest wishes Ali

Hi Gingerdog, I hope you are doing ok under the circumstances? I can totally relate to how you are feeling, I too have been told there are numerous patches of inflammation on my brain and spinal cord. My consultant says it looks as if it has been there for a long time but with changes. I saw a Neurologist 20 years ago and he said my symptoms were down to Neuritis (inflammation of the nerve endings). I have subsequently managed to get he letter he sent to my GP Practice at that time and it refers to demyelination and steroid treatment for any episodes. I have an appointment to see my Consultant on the 23rd January 2018 and am phoning regularly to try and get a cancellation as it is the not knowing that is causing me stress. The good thing is that you are being seen quickly and are taking pro-active steps to help yourself. You are obviously a strong cookie and just try and keep your chin up, I appreciate how difficult this is, I only stopped crying a couple of weeks ago. Take care and give your children and hubby loads of hugs, a hug never goes wrong in my opinion. Teenbo xxx

Hi, thanks for your posts, it’s always helpful to know we are not alone although i certainly feel alone. I too have found g jelinek, peoples stories seem more hopeful. I thought I was a strong cookie but feel like I’m drowning, the tears from utter despair to such anger. I suppose it’s natural to feel the worst, I’m sorry Teenbo that you have such a wait. Ours was 9 weeks but we managed to get a closer one. Maybe worth seeing your gp mentioning you’re struggling and see if they can bring it forward for you. Thank you sue1, I hope I do feel better in time, I hope we all do, I hope they find something to help us all. Wouldn’t that be the best Christmas present. I suppose I was always the one suggesting positivity to friends going through stuff, now I find myself wanting to admit defeat, without even struggling. I find myself scouring the supermarket and streets wondering who else is going through this uncertainty, not wanting to be the only one. Sorry for the negativity, Teenbo do you think you may have had this 20years? Thank you everyone, wishing you a peaceful evening xx

Hi Gingerdog,

I understand you feeling alone and its horrible but people will support you. My Mum said last night that it is so difficult to know the right things to say or do without seeming flippant or uncaring but remaining positive. I totally see her point! I know that I have told my husband and parents that under no circumstances do I want them discussing this with the wider family, not even my brother. We have told a few close friends that I do trust but I do know this is isolating me more but thats just the way I feel, at least until I have a definite diagnosis. Tears of despair, fear and anger are a definite, in fact I was at my GP (who I have to say is wonderful) last evening and was bubbling again. I feel as if I have to apologise but she was great and told me that if I didn’t feel this way she would be extremely concerned. It looks as if I have had this condition for 20 years and that the diagnosis at that time doesn’t even exist these days. What can I do!!! No point in looking back as I just want to know if it is indeed MS, do I carry on as I have the last 20 years and accept all the symptoms or do I go on medication to prevent further damage. I just want to continue to enjoy my life to the best of my ability and get on with it without this huge, horrible black cloud called “NOT KNOWING!!!”. I am phoning most days to see if I can get a cancellation but to no avail at the moment and it also appears that my consultant doesn’t have private clinics that I could attend and pay for…grrrr!

Keep your chin up Gingerdog, and please keep in touch. I have found the website a huge relief and any contact I have had with members has been lovely, informative and helpful.

Teenbo x

Hi everyone, we sound in a very similar boat Teenbo, I’m don’t really have much to say, nothing has changed, appt tomorrow which I hope will clarify stuff in a positive way. I went out yesterday doing an activity I love but haven’t done for the last month because I’ve been too negative and down. But I went and although I still have heavy clouds I enjoyed myself and began to see life can go on. Also ended up hearing from a friend who’s family member has had ms fur 20 years , diagnosed mid 40s. And still continues to live a full life, as much as see did before, nothing has been compromised. I suppose the aging process from which mo one is immune throws everything at us that ms does. But with aging we never expect it to happen to us. I feel the same Teenbo, wondering about medication, or will diet and a healthy lifestyle be better. Have you ever looked at gut health. Seems quite interesting to me at the mo. I only have my very close friends that know, I don’t want anyone else to know. But oddly find myself talking to strangers like the woman in the post office! I feel calmer today, although that could change. What questions would anyone ask at Neuro Appt? Thanks to you all x

Rather than the questions you ask, what’s probably more important is for you to be able to give the neurologist the information s/he needs to help guide them.

So in preparation for the appointment, it’s often helpful if you’ve written down all that’s happened to you, that you feel is connected. Write down rough dates and include such things as how long a symptom has lasted, whether it has completely recovered and / or anything that remains ‘odd’.

The neurologist will be looking for a complete picture of what’s been happening and so will ask questions related to what you have to tell him/her. They should also do a neurological physical exam (so wear shoes you can take off and put back on easily!)

It also helps if you have someone with you to help remember what is said. It’s not uncommon to come out of an appointment asking ‘what was said?’ And ‘what did s/he say happens next?’ It’s something to do with your worry leading up to the appointment and sometimes surprise at what is said.

Also, if the neurologist says anything you don’t understand, ask what they mean. They forget that you’re new to neurological problems and appointments. So ask when you don’t understand.

Good luck for tomorrow.

Sue

Thanks Sue x

Good luck tomorrow Miss Gingerdog. Hope it’s a good appointment to ease your fears. Neil x

Gingerdog How did your appointment go? Thinking about you. Sue

Hi everyone, thank you for yoyr thoughts, it seems according to the neuro i didnt have to go through lumber to confirm that i do have ms. My mri states that on its own. We beieve my first episode was 8 years ago, and as far as i can see nothing else in that time, which he says is a positive. Ill have another mri in 5 months which will.hopefully see a reduction in inflammation. I recorded the conversation on my phone so there’s no altering things in my mind. After the very dark time of imagining the worst i felt relieved, maybe if i look after myself i can go many more years without anything happening… i am truly thankful it is nothing worse. This started with nit being abke to get my words out properly, which has returned to normal. Will my tingling and inconsisent facial sensations go in time? My family have been so supportive and i feel like its time to get on with my life now, but i suppose i do wake up and it hits you all over again. I wish i didnt but… its the best out of a nasty bunch. No one knows what they are walking round with. I think its hard telling close friends as they dont know anything about ms, as i didnt a while ago, but they think the worst. I hope im not being unrealistic. I think it was also made clear in appt, that what we had googled had firstly terrifyed us and that much of it was outdated and not necessarily relavant. I fo feel like a weight as been lifted , i never tbought would happen. Ive had this 8 years and never given it a thought, and i do hope now ive been labelled that i wont let it define me now. Xxxx

Hi

Your attitude to diagnosis is one that a lot of people do feel. Relief that they have an answer, and that it’s nothing worse.

Having said that, sometimes you’ll get a rebound emotional time. When you start to feel bloody angry about having the diagnosis.

I do hope you find that your past 8 years is a foretaste of your disease pattern. That way, you’ll not be plagued with disease activity.

Did the neurologist mention disease modifying drugs at all? Or is the feeling that you’ll wait for the next MRI and see what happens then?

And did you get the details of an MS nurse? You might find that it helps to see an MS nurse, just so you have an immediate contact if you have questions or any symptoms that you want to talk about. I’ve always found the MS nurses to be really useful. Often more so than neurologists. And certainly it’s easier to get hold of a nurse when you want someone just to talk things through.

Sue

Hi Sue, drugs were mentioned but he implied that its important to weigh up which is worse, what im treating or the side effects. I can feel the anger, i want my old life back. And i feel like im just meant to get on now, but i am still so scared. Its that feeling that it wasnt meant to happen to me. We are going to see what happens at the next mri. I feel like thats life now, in and out of hospitals. I think the relief is thats its not worse but a couple of days on and 8 just want to curl up and cry. I dont have an ms nurse, apparently there arent any in this area. I dont know what i could do about that. My husband works away in the week, hes been at home for the last 6 weeks but he has to get back to it tomorrow. Life continues but i feel pretty dead inside and dont want to be without the support he gives me. I asked the neuro if there is anything i can be doing to help myself, but didnt get anything. Diet supposedly has no proven evidence of helpfulness. But surely it must. I dont know how to process all this, i dont suppose anyone understsnds until they are here. Its like a bad dream where you cant find your way back…and by the sounds of it medication isnt of much help. I need to find some fight in me. Writing these posts is so emotional, facing what seems beyond my control. I could go on forever writing, downing in my self pity. Thank you for reading xx

Oh I know. It wasn’t meant to happen to me either. Definitely not what was supposed to happen in my life.

You’re perfectly at liberty to feel the bloody anger. Yes, there’s relief that the diagnosis part is over. But then you’re left with the ‘hmph, so this is life now, so what happens next?’ So you learn to live again in a different universe. With a different world view

And as for having a husband working away, that’s what I had for years. Obviously, you could do with having him at home but, you’ll manage without him. Basically, you’ll have no other option!

As for what happens next, in many ways I understand the view of the neurologist. The various side effects from the different DMDs can be crappy. So, some people do choose to live without them. But the way I see it is that DMDs are an insurance policy. Yes, they often have side effects, but better some side effects rather than MS relapses. And there are some which essentially have only mild side effects. (Eg Copaxone.)

I’ve had bad side effects from DMDs apart from Copaxone. So am a poster child (aka middle aged woman) for what the side effects can be like. But I’ve had terrible relapses that have left me with quite bad disability. I was fine for the first 10 years. Then gradually became more disabled. But had a real humdinger of a relapse 6 years ago and haven’t been able to walk since. So in my opinion, DMDs are sensible. You weigh up the cost (ie side effects) from the benefits (ie relapse reduction) and see what you can live with.

So when you go back in a few months time, you’ll perhaps have had some time to think over your options. And what different DMDs cost and what benefits they can bring.

I truly hope you’ll have a mild form of MS. And if you choose not to take a DMD that it’s the right decision for you (& for many people it is).

And don’t expect to reach a stage of ‘acceptance’ of the damned disease too quickly. I may get there one day, but so far I’m 21 years in and resent the hell out of it.

And feel very free to ask questions on here about the disease, the drugs, the symptoms, the fury you feel and anything else that you need an understanding view of.

Sue