Newly diagnosed - I think.....................

New diagnosis and before diagnosis
1

Hello everyone,

I’m 25 years old and have just been diagnosed with relapsing remitting MS. I have just qualified as a registered nurse and started a new job in January, but after only 2 weeks I was put on sick leave because of my symptoms, and continue to be on sick leave. My main symptom at the moment is my awful balance and vision problems, eg: double vision and nystagmus. They showed me my scans which show a lesion right by the balance centre of the brain, which I’m told is why I have such poor balance.

I haven’t worked or driven since the beginning of February. I am trying to get my head around all of this, I feel like everything is falling apart, I have just worked so hard for three years, and it feels like my nurse training has all been for nothing. My main question, if anyone can help is how do they 100% confirm diagnosis of MS? My consultant was absolutely useless, I don’t feel supported, I just feel like they have jumped to MS and then let me go on my merry way without support. The consultant said she was ‘as sure as she could be’ about my diagnosis, given my symptoms and my MRI scan and they refused any other tests to see if it was something else. I just feel frustrated that they aren’t exhausting the other possibilities, it seems to me they have just gone straight to MS and thats that. I appreciate that she is a consultant, but my consultation with her, I felt was very unprofessional and that she couldn’t be bothered. I asked about steroids to help with my problems at the moment, but she refused, unless I get to the point where I can’t walk. I am worried, not only for my job, but I am due to get married in a month abroad, everything is booked and paid for, and I am worried that I will end up not being well enough to go :frowning:

Any help or advice greatly appreciated, I do apologise if this just seems like a big whinge.

Kind regards,

Sally

2

Hi Sally, firstly i feel for you, having trained as a nurse myself i know how hard it is…so sorry that you have this DX but if i was you id push for a second opinion is this consultant your seeing a neuro if not insist you see one…i hope your wedding is a good one for you and that you really have a great day…and Sally never apologise in here we are all here to listern and offer help if we can …one big family …the guys in here are great. Best of luck…love Mac xxx

3

Hi Sally

Sorry to hear you are having a tough time.I understand some of what you are going through, I fell ill just as I had been promoted and moved to a new town, just started dating someone for 1 month. Its a very hard knock to the system.But hang in there, cos we are here to help. I am sure, before you know it, you will be back to work and flying off to your beautiful wedding.

I am not diagnosed ms, but have most of the symptoms. However, I thought that they only gave a complete MS diagnosis after you have had several separate attacks of lesions. it usually starts with a "possible"ms ,until further diagnosis which takes a long time.

You have every right to see someone else. You don’t have to put up with vague sloppy treatment from anyone, let alone professionals. Don’t forget you can go higher, if you want some questions answered. I did, and I managed to find someone who had the time for me, instead of feeling rushed through diagnosis. I wrote a letter of complaint, made a phonecall and had a private meeting, and they put me at ease and sorted out the mess and confusion I was in very quickly. I would stress the point that you have a wedding on the horizon, and I’m sure they willl be sympathetic and help you as best they can straight away.

on another note - steroids - i don’t think they are keen to dish out this medication, as it has a big impact on the body. Its usualy used if nothing else works. I was on steroids throughout my childhood, and try to avoid it as much aspoßible. Mind you they should be prescribing something for your symptoms. I’m on gabapentin for my nystagmus.

Being a trained nurse I wondered if their was someone in your department who can help and advise you. I would have thought you are in best place for contacts, supportandadvice. Also once you are well enough your department should be doing everything they can to help you get back to work. Eg part time, desk work,what ever you can, to ease you back in .

Lastly, even if you do have MS, you will most likely be just going through a flare up. And might not get another one again for a long time. Lesions come and go, like bruises. Depending on the severity of your attack , you should regain most or even all of your sight and balance. Most MS patients lead a normal live, with the right medication and healthy diet .

Be strong sally and good luck pushing for better treatment.

Almond xxx

4

hi sally what a wee shame it soundslike you are having a hard time there is light at the end of thetunnell as the relapses happen and go again ad hopefully you will feel much better for your wedding if you phone the ms society they will give you a number for an ms nurse who lives near to you i hope things get better for you soon and take care xx

5

Thank you Mac, Almond and eveynoble.mum, your kind words really help and your advice is invaluable, much love to you all xx

6

Hi Sally, Oh what a terrible time you are having. I can totally understand your frustration. I was diagnosed 4 weeks ago, after 2 mri’s and still trying to get my head round it. I too am having diziness and vision problems in 1 eye. I see double and cannot tell depth, hence everything I do is taking twice as long. After a few weeks off sick I returned to work last week for my own sanity. I have started back on reduced hours to ease myself back in. Some days I feel better than others and I feel like screaming “I’m still me”, however as you will understand other days I just need an afternoon nap due to exhaustion. I am due to start copaxone injections next month for the ms, after a 3 day steroid drip for the sight, arrrghh. I have a toddler and am also living with diabeties, which I can cope with, but the ms just seems to hit when me, when least expecting it. Frustration is my new word, this week, but with the help and understanding of my husband, family and friends, I hope to be able to live with this. Never feel like a hinge, as it is all I have seem to have done, more so because of the vision. Lean on your family and never feel guilty.

7

Hi Sally,

Totally feeling your pain right now! I’m currently studying the access to higher education course and have a uni place to start in September for midwifery. However since December I have had double vision in my right eye, terrible headaches, extreme tiredness, surges of pins and needles over my head and face. At the end of january I finally went to the dr’s and was referred to opthamology and mri.

Yesterday I met with a neurologist and was told I have multiple lesions in my brain and due to a previous bout of loss of sensation in my lower limbs for a period of 6 weeks exactly a year previous to onset of current symptoms, he was pretty certain I have MS. From there on the appointment seem to speed up (well in my head anyway as just wanted to run!) I have a lumber puncture booked for a week monday, bloods were taken to rule out lupus and neuromyletis optica etc, I have 5 days of steroids and my details passed to a MS nurse. He went on to discuss drug therapy that I would recommended for…What?? I can’t beleive this is happening, I have been on a rollercoaster of emotions.

I really don’t know what to do, I have three little girls under 8yrs and my first thoughts are to let the degree go and enjoy my children whilst I can as I don’t know what the future holds. But then another voice butts in and says don’t be silly your only thirty you can do this! But when i look back on my attacks they were both stressful times in my life so then I think don’t rock the boat!! I haven’t spoken to the uni yet as waiting for results from LP to come back…It may even be that I can’t do midwifery now… I just don’t know