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Bit overwhelmed - hospitals, test, procedures....the future

Hi everyone,

I’m in need a bit of support from people who can understand how I’m feeling. My neurologist has basically said he’s 99% confident I have MS and it’s a little overwhelming.

In May 2011 I had paralysis in my legs which ascended my body to my waist. At the time I didn’t receive awfully good treatment and did not have the tests I should have done while in hospital. I was diagnosed with a Guillain-Barre syndrome (demyelination of the peripheral nervous system) and I made a good recovery over a 6-8 month period. I was able to walk without a stick by October which was good going and given GBS doesn’t really relapse, I was given a clean bill of health. I then moved house mid June 2012 to a new area, and two days after the move I developed severe double vision. I went to Derby hospital and saw the ophthamlogist and was referred to a neurologist. Following the history taking, electromyography and a brain and spinal MRI, the neurologist has said he’s virtually positive it’s MS. He ordered a lumbar puncture which was somewhat delayed and I had it last Friday. Unfortunately it was not successful and I went back for an x-ray guided LP today.

My neurologist told me this last Monday that if I had not had two relapses in 13 months he wouldn’t have pursued the LP - he said it isn’t always helpful to be officially diagnosed for lots of reasons (mortgages/insurances/DVLA etc) and that if the relapses are few and far between he would diagnose when the time is right. As it stands I have had the LP as he wants to diagnose me so I can be put on beta interferons to reduce the relapses.

I have so many thoughts and questions going round in my head, from whether I am going to end up unable to speak or swallow, what drugs will I end up on and how will they affect my life, feelings of guilt towards my husband that I’m ill, right through to whether or not I should have children. I am 30, I’ve been married for 3 years and with my husband for 9 years and we were planning on starting a family this last year. I just feel everything is topsy turvey. I want to be strong for my family and myself and I’m determined to get myself as fit and healthy so I can handle relapses as best I can, but it’s all a bit overwhelming.

Has anyone experienced something similar? Also any insight on the beta interferons would be greatly appreciated :slight_smile:

Sorry for the long post and thanks for listening - even writing this was cathartic.

Stardust x

PS. It’s not all doom and gloom - tough times can bring out the best in people. My family and work have been fantastic and I’ve been enjoying walking my little puppy in the Peak District. Life can still be good.

It is a tough time, without a doubt, and I feel for you. That topsy turvey-ness is hard to deal with - so much in life feels as if it is shifting about, and it can be hard to find solid ground. Don’t worry about feeling overwhelmed - who wouldn’t be? I think the things you are going through now are just an inevitable part of the process of finding out what is the matter and starting to come to terms. There is no easy way of getting through this - it is just a matter of grinding through it, day by day. The good news is that this phase does not last - things DO get better, and that is the most important thing for you to remember and to hang on to. Life starts to take shape again, you get your bearings again, the fears for the future don’t dominate in the same way, the here-and-now starts to reassert itself (in a good way), it becomes easier to enjoy the good things wholeheartedly again, those blessed moments of happiness and ordinariness stop being so few and far between. Life goes on. It might look a bit different, and that takes some adjusting to, but a person can make a good life for herself with MS, and the people she loves can too. Just hang on in there.

Keeping well nourished and exercised is always good for morale, I agree. And the DMDs are powerful allies - their proven results are good, and it is always nice to feel you are taking the fight to MS, rather that passively waiting to see what it will do.

Good luck with it all.

Alison

x

I think your last sentence sums up everything for me: Life can still be good.

It really can you know.

It does take a while before someone who’s just diagnosed can realise the truth of that though. Alison has described it perfectly: “Life starts to take shape again, you get your bearings again, the fears for the future don’t dominate in the same way, the here-and-now starts to reassert itself (in a good way), it becomes easier to enjoy the good things wholeheartedly again, those blessed moments of happiness and ordinariness stop being so few and far between. Life goes on. It might look a bit different, and that takes some adjusting to, but a person can make a good life for herself with MS, and the people she loves can too. Just hang on in there.”

As far as your specific concerns go:

Having MS does not preclude having a family. A lot of women find that their MS goes into remission while they are pregnant. Unfortunately their risk of relapse is higher than normal during the first three months after having the baby, but it then goes back to normal again. MSers are slightly more likely to have to have some sort of intervention like forceps during delivery, but the babies are perfectly normal and recovery from labour is good. The only consideration you would need to make is timing because you should not be on beta-interferon or any other DMD (disease modifying drug) during pregnancy (although evidence suggests that it might be OK, they like to be cautious). As far as bringing kids up as a parent with MS, yes, it can be difficult at times, but kids are incredibly resilient and adaptable so most MSers manage to do a good job regardless of their MS.

The best place to get info on DMDs is the msdecisions website. In summary, DMDs reduce the number of relapses people have, reduce the severity of any that still happen, delay the onset of disability, may slow progression and even increase life expectancy. Which one to choose is a personal thing: balancing side effects versus features of each DMD. There really is no “right” choice - just go with your gut feel! If you want more info or personal experience then you can always post on here - there’s always someone to help.

Couple of bits of “housekeeping”: you need to tell the DVLA about your diagnosis and you should check through any policies you have that might have a critical health clause (MS is a payable condition), e.g. your mortgage.

Karen x

It always leaves you not needing to say anything after a response from Karen,but a hello and a welcome from me aswell.

Have to say the photo of your pup is well cute,and a reason to go out walking is always good for you.

Take care and today will be a good day

Pip

Thanks so much to you Alison, Karen and Pip. Hearing from you has really helped me and I feel like I’ve got some support and friends in the making. I’m sorry it’s taken a while to respond - I haven’t been feeling too great following the lumbar puncture the other day. Staying flat is definitely helping and although the headache isn’t crippling, it’s not too much fun :slight_smile:

You give good advice about what i’m going through. It feels all consuming initially doesn’t it. I’m looking forward to getting the official diagnosis, sorting my meds and then being able to get on with life. I want to learn about MS, understand what the drugs are and what my choices are, and the website you told me about is very good. There is an awful lot to take in at the moment so I have deided to park it until I’m through with the side effects of the LP.

I’m more positive today - the sun is shining and at least there is the Olympics to watch on TV while this headache has set in :slight_smile: Pip, my pup is a star. Barney is very funny and great to have around - although I haven’t heard him in a while which means he might be digging. Little monkey!

This forum is fantastic - I know I’m not on my own with this…

Stardust x

Your positive approach will stand you in good stead.

You may find you suddenly find some things difficult,but if you are up beat and work out new ways of doing things,it certainly keeps you on your toes,and means you never get bored and stuck in a rut.

Rizzo pointed me in the msdecisions site and I really went through it,concentrating on my choice becoming a way of life and which side effects I really didnt want.

Never knowing when my eyes would play up removed ones you had to mix out of the equation,and with family living all over the place I had to think of general travelling about not just proper holidays.

You have plenty of time to choose and I am sure you will develop a gut reaction to what is right for you.

Hope you and Barney have a good day

Pip