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Hello waves,

I am unsure if I have an official diagnosis of MS at the moment or not. I guess I’m kind of in a limbo state. So I thought I’d check out the forum and see what sort of support is around. I’ll share my story and a bit about myself and life at the moment (apologises if this is long).

I’m 26, female. On October 29th 2018 I woke up with weird vision in one eye, it felt weird to see like zigzags in my peripheral vision and I had, had an headache the previous day. As migraines are a part of my family, I went to the doctors who said it was a migraine, take pain killers and sleep it off, I’ll be better the next day. That didn’t happen, for the next 2 and half weeks I saw 7 different doctors and an optician whilst my vision deteriorated. I was also placed on a cancellation list for an MRI scan to rule out anything “sinister” as one doctor told me. I failed the field vision test and was considered “blind” in that eye. I was placed on migraine medication, told it was an Optical migraine and just left alone.

After 3 weeks (19/11/18), I was feeling even more down than usual. I had, had my MRI by then but no results, and no improvement at all in vision. I saw another doctor who was disgusted by how long I had been left, she thought it was some inflammation causing my vision and got me an emergency appointment to see the Ophamologist (however it’s spelt, I’ll just say eye doctor) the same day. Even though every test was coming back normal, I finally felt okay that someone acknowledged that someone had confirmed my eye was not working by doing a simple light swinging test. The doctor mentioned it looked like Atypical Optic Neuritis but he didn’t want me to have any steroids, and that basically there was nothing I could do but he wanted me to have some blood tests to confirm this (I have no idea what these tests were for) and would refer me to Neurology as a precaution. Told me to follow up with them in 2-3 weeks. Oh and they still didn’t have my MRI results.

10/12/18 Although there was only a slight improvement, I was still not able to see properly and on my return to the eye doctor, I saw a different doctor who sat me down and asked me if I had seen a neurologist (which I had an appointment for on 17/12/18), so I told her no. Out of nowhere she went: “Well it looks like you have Multiple Sclerosis.”
I sat there in a complete and utter state of shock, no one had mention this to me at any stage and she had dropped it on me. She then read my MRI report stating various lesions, of varying sizes throughout my brain mainly on the right side which the neurologist report suggest was demyelination. She then looked at my face and said “You look worried, what’s the problem?” I had to then explain that i had only been told of the Optic Neuritis and nothing more. To which her reply was “It’s nothing to worry about, MS happens all the time.” Then she sent me on my way in a stunned mess.

Shock was an understatement. I was devastated and confused and angry, in all honesty I still am. On top of this I had my family wanting answers, where had MS come from? what exactly was it? how do they make it better etc? and having to come to terms with it myself and that on top really just shook me up. By the time I saw the neurologist I had already prepared myself for the outcome.

On 17/12/18 my neurologist sat me down and asked me my history. I have depression (have had for nearly 2 years now), I had a condition called Vestibular Neuritis which knocked me off my feet a few years ago (he believes was my first tell), he tested my reflexes, checked my balance etc and he looked at my MRI results (my brain looked like a christmas tree), he asked if I was a smoker (I’m not) and my age, he stated that it was not normal to have these lesions at my age. He then asked if I had heard of MS, so I told him about the doctor above. He was stunned. But he told me that it was probable MS, and that he wanted me to have a Lumbar Puncture and some blood tests (to rule out other diseases he said), he told me to contact the DVLA with this diagnosis and that to use this date as my date of diagnosis. That he would get me in touch with MS nurses and after the LP would start me on medication. So I’m unsure if I’m officially diagnosed or not. But my consultant has been a trained doctor for 18 years, a consultant for 8 years and specialises in MS, so I assume he is pretty certain.

I had my LP 9/1/19, it was better than I had expected, but I did not get the headache, only backache which lasted a few days. The doctor who preformed the procedure told me to contact my consultant for my results in a couple of weeks as they should all be back. I have another appointment to see my consultant on 29/3/19.

I have rang my consultants secretary who said that the results I require won’t be back for 4 weeks and then she is on annual leave, so I have to contact her on 11/02/19. But in all honestly I’m unsure what I’m really do about the results, or what anything means. I don’t know when or how I’ll be medicated, if it will be my consultant in March or the MS nurses if I ever meet them and honestly I have no idea what I am doing.

I also have received a letter from my consultant with my blood results, and stating my Vitamin D level is insufficient and that i need to start taking 4000IU Vitamin D tablets daily. I obviously don’t know what the blood results mean either but my eye is vastly better however slightly colour blind in that eye, and it is no longer as strong as my other eye. It also gets worse when my body temperature increases. I’ve also felt incredibly tired since being “ill”, returning back to work has drained me incredibly. I’ve had numbness and pins and needles, I sometimes get twitches/spams and if I get really tired I start to get tremors which i have noticed more since returning to work.

I have no idea how i currently feel, I have no idea how to be, and honestly I’m scared about the future, but also I just want to know already, to start a medication, and feel normal again.

So this is me, and I just wanted to say hi.

Hi Diggo,

Sounds Australian but you can’t be by the way you write the date.

Anyway; yes it is very difficult to get your head around a diagnosis. I remember it took me about 8 years after my diagnosis in 1973 to come to some kind of understanding; realisation; acceptance.

Fight it I thought, but MS always wins. Today there quite a few DMDs that could help and I am surprised that second Neurologist didn’t put you on one.

He might be thinking you have something called APS, see http://aps-support.org.uk/

Basically, it is a disease that mimics MS symptoms but has these constant bad headaches.

Do you drive; if so the only legality is you must tell the DVLA? Don’t worry they will not stop you driving; not a legal requirement but obvious really advise your insurance. It is just they can wriggle out of a claim saying you did not advise them.

Also if you have a mortgage, do you have ‘critical illness’ cover; if so claim?

As far as work is concerned contact Get support in work if you have a disability or health condition (Access to Work) - GOV.UK lots of help available.

Good luck

George

Hello Diggo

I am so sorry you’ve had the most awful 3 months. I can hardly believe the incompetence and stupidity of the ophthalmologist who told you it was MS. The only doctor allowed to diagnose MS is a neurologist. Which is why the neuro you saw a week later told you to use the 17th December as your date of diagnosis.

And it does seem that you have been diagnosed, even before the LP results are in, a neurologist can diagnose you based on your history, physical examination and MRI. The LP might put a tin hat on it, but to be honest, even if the LP is negative (for Oligoclonal bands, which is what they are looking for in spinal fluid), you would still have MS. Only about 80 to 95% of people with MS have O bands in their CSF. So it’s not a requirement for diagnosis.

People with MS are regularly told to take a supplement of vitamin D. And if yours is low, then it’s even more important. It’s just that it’s useful to have your blood tested after you’ve been on the high dose for a while (and 4000iu is quite high, though common for MSers - it’s what I take).

In terms of treatment, you’ll likely be asked to consider which out of a short list of a few disease modifying drugs (DMDs) you’d prefer to take. A DMD is a drug designed to reduce the number and severity of relapses. The different drugs vary as to how they’re taken, their average relapse reduction rate and their side effect potential. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid It does help to have an idea of what might be on offer in advance. Certainly it’s a good idea to take a DMD, it’s a kind of insurance policy for the future. None of the drugs are infallible, but it should help.

An MS nurse, once you see yours, will be an excellent source of help, advice and support (I’ve just seen mine this morning). As you get to know your nurse, and s/he gets to know you, you’ll find (hopefully) that they are your first port of call for information and advice. Meanwhile, we (ie the members of the forum) are always here to offer whatever help and support we can. Someone is bound to have experienced whatever happens to you and will try to share that experience with you.

One thing I would share with you immediately is that an MS relapse (which is, I imagine your recent bout of optic neuritis to have been) can take months to remit. You expect once you hear the words multiple sclerosis, that what happens to you will be permanent. Then you find out more and expect that the symptoms will ‘remit’, ie get better. You imagine that ‘remission’ might take weeks. In fact a relapse might have full or partial remission in a matter of weeks, but remission can continue for months it could be six months before you find your eyes feel or see like they did before. Just don’t expect that if you’ve not had full remission in the first few weeks that what you’re left with is permanent. It might not be.

I can imagine that right now you are in shock at your diagnosis (and have been worried about whether it is or isn’t a diagnosis) and don’t know how to feel about that. Do allow yourself time to absorb it. I’m in no way going to suggest you should be positive, or ‘accepting’ what’s happened to change your life. Allow yourself time to feel sorry for yourself, and to be furious with the diagnosis. Tell just the most important people first rather than feeling the need to share the news with everyone. Gradually, you will find that this diagnosis does not define you, you remain the same person you were and have the same hopes, dreams and expectations you did before.

Best of luck.

Sue

Hi George,

Diggo is a childhood nickname given to me by my brother, it isn’t my real name.

Wow 8 years is quite some time, some people in my life can’t understand why I haven’t accepted it all yet when it’s only been just over a month. Also many don’t understand the frustration I feel too, and don’t get that when I snap it’s nothing personal I just am not processing it well.

I haven’t been on any DMDs, all my neurologist said was that he wanted to dot the Is and cross the T’s before he starts me on medication.

I doubt it is APS as I haven’t had bad headaches which always confused my doctors in the initial start when they said I had migraines. Plus all my blood work seems to be coming back fine (other than the vitamin D).

I do drive, I have informed the DVLA for that reason and I also contacted my insurance provider for that very reason, they are completely fine with it. Just waiting on the DVLAs investigation.

I do not have a mortgage, I live with my parents (which is kind of a blessing at this moment with this condition etc) and I have no life insurance etc so I can’t claim any of that.

Works actually not been too bad in helping me return to work, it’s a gradual process as I and them figure out what i can and can’t do. But I have no idea if I’d be able to maintain a full time job, I’ve only been doing 12-16 hours a week of 4 hour shifts and when I get home I’m flat out and so tired I can barely move and function.

Thank you for taking the time to reply :slight_smile:

Di

Hey Sue,

I think it was because she was reading the MRI report (obviously done by a neurologist) but I just felt she should not have told me the way she did, like it was nothing and especially as I had not once had MS mentioned to me throughout all of this. But yes it was quite a shock.

That makes sense, the neurologist basically said he wanted to do the LP to dot the I’s and cross the T’s, so I just assumed it was to check to make sure there was no other cause etc and to say he’s covered all the bases as it was. But all blood work has come back fine (i think apart from inflammation but considering I am still recovering from ON I don’t find that a surprise.)

It does say in the letter (the one telling me I need to take vitamin D) that he will retest my bloods when I see him again (which I assume is the appointment in March) and see it makes me definitely think the doctors diagnosed me as you say it’s high but common for MSers.

My neurologist said I would be taking a tablet, although no idea which. But I shall definitely be reading that, I’ve actually ordered a lot of information from MS trust for myself, my family and my work, so I will look into it. I have no problem in taking any medication if it helps in some way, I mean I’m still taking anti-depressants, so I’m not bothered about that.

I hope so. Honestly it will be nice to have people that understand, and to have some more support because at the moment I do feel quite all over the place.

Honestly, after losing my vision and having no improvement for months, I’m happy with the vision I have because I was a scared it would never come back! In the same vein as you said it might not be permanent, the eye doctor said there is a chance it could be permanent and may just always be weaker, and the colours may or may not improve. But so far it does not affect me very much only when I get really hot.

In all honesty I feel angry and upset with life. It’s no ones fault but I want to blame something, I just feel like I can never win in this life and some people around me don’t know how to react to that. I am in shock still, and I am tired 24/7, but I also have no motivation or will to keep trying and fighting. People keep telling me to be positive and things could be worse, but I am still trying to wrap my head around everything and that things may not be as they once were. I know nothings changed but it feels like I have. Also great advise but sadly most of the people in my life know. I told work due to my 11 week absence from there and the fact they have had to change and adapt to me, as I didn’t want my coworkers whispering and talking behind my back about why I was being treated differently I also made the decision to tell them. Sadly no one seems to know how to speak to me or even ask about the MS. So as you can see I’m very much all over the place. Emotional, tired, many things.

But thank you for taking the time to reply and be very supportive and informative.

Di