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newly diagnosed I think..??

Hi

I have had 2 episodes of optic neuritis in the last 6 years and have just experienced my first episode of tingling in my legs, arms and face. The tingling has been happening on and off now since January. I freaked out a bit when it first happened, especially when it affected my face, but I’ve got more used to it now and it is more of a nuisance than anything. It was the doctor at the eye clinic I went to when I had my second bout of optic neuritis who suggested it might be MS, he referred me to a Neurologist who arranged CT, MRI scans and also an evoked potentials test - all of which showed evidence of changes. On my third visit to the Neurologist, he said it was likely that I had benign MS as my symptoms were mild and infrequent. I am currently awaiting another MRI scan to see if there have been any further changes. I declined the offer of steriods, feeling that I would like to manage without drugs if at all possible. The Neurologist basically said to ‘forget about it and just get on with your life’. Whilst I am sure he meant well, I have been left feeling abandoned. There was no offer of further information or support, I was not advised if I should declare it to insurance, dvla, work etc. I am not even sure if it has been definitely confirmed in my notes at my GP surgery. I am about to start a new job and will be travelling quite a lot, I am reluctant to tell my new employer as I am a contractor, not staff and therefore in a very precarious position financially. Basically if I don’t work, I don’t get paid. The strain of keeping this information to myself is proving difficult and I am worried it will affect my ability to do my new job - the emotional stress rather than any effect of MS. Can anyone offer any advise please? Sorry for the length of the post.

Hi,

Sorry to hear that you have been left in this situation. Visit your gp to find out if they have recieved a letter from your neuro. Or you could ring your neuro’s sec’ and ask if they have a definate dx for you. If they have can you please have it in writing. Have you been offered an MS Nurse? There is a MS helpline which you can ring and they inform you of many things and also send you brochures which explain the ins and outs of MS.

I’m sure there will be others on here who will also help you out with more information.

Janet

x

Morning Eastengirl!

I agree with Janet - first things first - pin things down a bit more before you think about DVLA/insurance/telling your boss etc etc! x

As for your job - take things one day at a time - don’t try and predict what the future holds - if you are capable now then go for it! Recently I had no choice but to let an opportunity go because I know I’m in no fit sate at the moment to do it justice.

I’m also always on temporary contracts in work - but I’ve been there 7 years now so legally they have to treat me like any other permanent member of staff so I’m being paid whilts on sick leave.

I can understand how you feel abandoned - it seems like it as the docs see you for your 10 or 20 minute slot and that’s it for them until the next time! I would think they are jus waitig on the next MRI before confirmong anythng x

In the meantime chase things up and get that support you need by following Janet’s advice x and of course the excellent advice and support you get from others on here xxxxxxxjenxxx

I would def book an appt with your gp but a few weeks after your neuro appt as they can be a long time typing up and forwarding to the gp.

Tell the gp you were told by the neuro to discuss your results with them,especially in terms of effects on your everyday living.

Unless your symptoms currently effect your work I wouldnt say anything.If it does clearly state on your notes that it is ms then you will have to tell dvla/insurance.Other than probably going to a three year licence it will not affect your ability to drive for work and they cant increase your insurance premiums.

Best of luck

Pip

Thank you so much for your supportive messages Janet, Jen & Pip; it is a relief to know that there are other people in a similar situation and have ‘been there, done that’. I called the Neuro’s secretary who said it is a 7 week wait for referral back for MRI scan so I have a few more weeks to wait yet. I might try and see my GP in the meantime to clarify things a bit further. No I have not been assigned an MS nurse, I think the neuro didn’t feel my situation warranted it. I will just have to see how it goes. Thanks again for your support. Will post again when I have more news.

I’m sad to see that things haven’t changed much!

I was told by my neuro in 1995 to go away and live a healthy life. I didn’t see another neuro for 10 years until a new GP urged me to have anther go.

Although it was pretty useless as advice I more or less did it (live a healthy life) for a decade or more. My dx was very wooly and I waited in vain for someone to tell me it had all been a mistake.

I guess even the neuros don’t have a crystal ball and can’t tell what will happen if you don’t fall neatly into the RandR camp. My advice is to do as the others have suggested, find out what the consultant has written to the GP but don’t expect much from your GP most of then know next to nothing. Then make your plan to wring as much life out of life as you can.

I have done lots of exciting things since 1995 and I have told or withheld the MS issue as I saw fit. I did tell my employer but I had a lot of time off initially and it was impossible not to.

Jane

I’d think very carefully if you are thinking of managing your condition without drugs full stop on point of principle. For example, page 7 of this week’s New Scientist reports a study on Interferon Beta cocluded 19 years ago that has subsequently shown a 46 % reduction in mortality over those that took a placebo. Aso the opinion that your MS is likely to be benign is really only something that can be known retrospectively.

Update March 2013

Hello again everyone, when I logged on here this morning I was shocked to find I hadn’t been on here for nearly a year… don’t know where that time went…!

Since last posting I’ve had a few more symptoms, been back to the Neuro who has now said ‘on the balance of probability, it is likely to be relapsing-remitting MS’; but he couldn’t say for definite unless I had a lumber puncture and even then he couldn’t promise a definitive answer - they just don’t like to commit themselves with a definite dx do they??? Also said to just go away and get on with life, get in touch with GP for a referral back to Neuro ‘if things get any worse’.

Can I ask if anyone is being treated for depression either because of their MS or as a co-existing illness? I referred myself to a private counsellor back in July last year because I just wasn’t coping well with anything and have been seeing her on and off ever since; in last couple of months plucked up courage to go and see GP who put me on anti-depressants which I persevered with for 6 weeks but then had to come off them as they were making me feel so ill. I also had some unexplained symptoms which I put down to side-effects of the AD’s; but since discontinuing the tablets; these symptoms have continued, my GP sent me for more tests and said she didn’t want to try any other AD’s until I’d been back to see her about test results. Consequently, feelling very alone, scared and unable to cope.

Really sorry for length of post and whinge, just feeling at end of tether.

Hi eastendgirl Yes, I was diagnosed with “significant anxiety” and “acute depression” shortly after being told I had MS. I was told that there are two approaches to the pathway of depression and anxiety alongside the diagnosis of MS. Firstly that it results from the very fact of diagnosing and coming to terms with such a condition and secondly that it is an organic part of the disease and can be dependant on the areas of demyelination. Either way, a course of counselling seems to have helped me alongside a mild dose of amytriptyline. Whilst I wouldn’t say all is back to life “pre MS”, my mind is definitely healing and I have more positive days, than negative. Xx

Hi Eastend Girl

What an awful experience this has been for you. I’m currently in limbo with probable ms and the stress got to me. I do suffer with depression and take meds to control it. At first I found that I was too embarrassed to let anyone know but I have definitely found it beneficial. Not everyone does, but I do think you should get some kind of help, either meds or counselling. You do appear to have a busy life and you could do without the stress.

It is your decision but even if it just helped to ensure you slept well it would be a benefit. I would speak to the GP who can assess your needs. Please just don’t hide your feelings out of pride.

I hope this is what you were asking, and good luck.

Min xx

Can I ask why you don’t have an LP? Although it shouldn’t be necessary - a repeat MRI showing new lesions and your history should be enough unless alternative causes of your symptoms haven’t been ruled out? Is your neuro an MS specialist? As Catherine already said, depression can be a direct result of MS (ie damage to the parts of the brain involved in mood regulation) or it can be a consequence of dealing with MS (diagnosis, uncertainty, symptoms). It could be that a different type of ad would suit you better so, if your GP and counsellor think you would benefit from one, it might be worth trying again. Karen x

I have been suffering with anxiety and depression for the last three years. It has been really hard for me and have been on anti depressants since 2010. During these 3years I didn’t know what was triggering it at all. The periods of dizziness were starting to control my life and couldn’t see an end of the tunnel. Then my vision became a problem resulting in the last 18months of having various tests on my eyes to be advised they were really healthy. I had been referred to a neurologist by my ent consultant and from the MRI scans which I have had various plus an MRS scan and lp had MS confirmed as the diagnosis about 10 days ago. In some ways the diagnosis has helped with the depression as I now know all the symptoms are down to one condition. I am now feeling very scared about the future and how I am going to get my life back on track. I have appointment at beginning of April with a MS nurse I hope this will help with me going back to work as I don’t know how else to deal with things.

Thank you all for your replies. I managed to get an emergency appointment with my GP today and she has prescribed a different type of anti-depressant. She hasn’t had the report back from my last Neuro appt yet but as far as he is concerned, the symptoms are not severe enough to warrant any sort of treatment. I think he is taking a wait-and-see approach.

I think at the moment I can cope with the physical symptoms I am having, it is the psychological ones that are more of a problem as regardless of the cause, they are ruining my life. As I work full time and am only wage-earner I can’t afford to take sick leave (I am a contractor and don’t get paid if I don’t work); so I really need to take back control of my life, which is feeling pretty out of control at the moment.

Rizzo - I have been offered an LP but am too much of a coward to have it done…!

Am also under a lot of stress from husband who basically can’t cope with me not being able to cope and thinks if he buries his head in the sand it will all go away…

Thank you all for taking the trouble to post back to me.

Sue x

Been over 2 years since I last posted on here, just having my 3rd bout of visual disturbance symptoms and have been referred for another MRI with a view to going back to see Neurologist again depending on the MRI results.

Still working full time and also now caring for 2 people in 2 different houses. I can’t afford to be off sick as am the main wage earner and am contracting, so no work, no pay.

Have been taking anti-depressants and anxiety medications for last 4 months, this latest problem with my vision is the last straw… My stress load is at the max and I’m not coping too well.

Sorry for the whinge… just needed to offload.

That is so tough for you - I am sorry. It is a bad feeling when the burden of many responsibilities are weighing heavily and it is hard to see a way through. Just take it one step at a time. Sometimes there isn’t much point in looking too far ahead - the only thing for it is to just deal with the next thing.

Having said all that, you aren’t going to be much use to the people who depend on you if you become overwhelmed and unable to function. If you feel that you are in danger of that, I think you need to admit that to your stakeholders and ask for their help. In my experience, it is always - always - better for a person to admit defeat and send up distress flares good and early. Even if they feel that they are letting people down. Even if (particularly if!) admitting defeat feels like a humiliating personal failure. Crumbling into an out-of-the-blue (to everyone but you) nervous collapse and leaving everyone in the lurch without warning is likely to be the worst outcome for everyone and - for you - the one hardest to deal with and recover from.

Good luck with it all.

Alison

Am beginning to wonder if seemingly unrelated symptoms could in fact be caused by or linked to MS… Long before I started experiencing visual problems, severe depression & anxiety took hold, I’ve been off and on antidepressants for about 4 years now and am also taking beta blockers. Also wondering if being under extreme stress could exacerbate the vision problems… again, I never linked this to the possibility of MS before, likewise balance problems, which I always put down to ‘being clumsy’…

I wish there was a definitive way to diagnose whether the random things I’ve been experiencing is MS or not…rather than simply ruling everything else out…

I wish I hadn’t had those two letters ‘MS’ put into my head, I wish I didn’t know… but now I know that it’s a possibility, it’s not something I can ignore and pretend isn’t happening. So I want to find out for sure, one way or the other… Is having a lumbar puncture the only certain way to get a diagnosis as I’ve been told even that isn’t foolproof…?

I think it’s the snails pace speed of everything and the constant uncertainty which is the worst thing.

Am doing my bit to try and manage the symptoms I’m aware of and get help when and where it’s available (which is few and far between) but it feels as though the medical professionals are dragging their feet - though reading through other posts here, that seems to be the norm.

I think I’ve reached the point where I don’t really care if the diagnosis is MS or not, but it would be good to know so that I can put plans in place…

18 months on and I still have double-vision problems, am using a temporary prism to correct the double vision otherwise I would not be able to drive or get around at all. I cancelled my last 2 Neuro appointments, thinking that there was nothing he could do anyway and I’d just have to live with the various symptoms; however they have been persistent and sent me another appointment which I am now thinking I should probably keep.

I need to know if the seemingly unrelated symptoms are related or anything to do with MS (still unconfirmed as definite). The vision problems are really getting me down and I also now have overwhelming fatigue which I don’t believe is ‘normal’… I am still working full time although lately I am struggling with that and also still between 2 houses as carer. I have reached a point where I can’t cope with feeling like this anymore so am going to admit defeat and keep the next Neuro appointment in the hope that he can either rule in or rule out these symptoms as being MS related or not.