Not yet diagnosed BUT....

New diagnosis and before diagnosis
1

OK so roughly 10 years ago, when I was about 34 years old, I suddenly developed diplopia (double vision) whilst driving to work. I instantly make an appointment to see my Opticians who referred me to my GP who then referred me to Ophthalmology who confirmed my diplopia status and prismed me up. This bout lasted 6/7 months but it did clear up. MS Testing was advised but I shrugged this off as I believed this was “due to my lazy eye and patch which I had to wear as a kid” and genuinely never gave it a second thought. All was good in the world again.

Fast forward 10 years to early 2017 and I wake up with diplopia again. I repeat the same actions as above. This time it lasted 7/8 months but it did clear up eventually THEN I got attacked with a cacophony of symptoms which hit me approx 2 months later.

16 Dec 17. First there was intense, violent and uncontrollable projectile vomiting lasting for 3 days solid. On day 3, I managed to eat something and actually keep it down however I became aware the right hand side of my face and skull felt completely “frozen”. Please understand, my face doesn’t look or act any differently, it just feels frozen. Then the diplopia along with blurred vision had returned, add in complete loss of balance and that summed up my last few months. Oh and I had occasional incontinence too. I saw an emergency GP as this was over the Christmas period who confirmed it wasn’t a stroke I’d had and gave me steroids which should “sort me out” within 7 days. They never. I then made an appointment with my own GP where an “Urgent Referral” was made to Neurology on 15th Jan.

Last week I started losing control/strength in my right arm and right leg which caused me to fall…hard! 10 falls later with LOTS of cuts and bruises and I’ve finally convinced myself I have MS but my “Urgent Referral” with Neurology still hasn’t materialised (and yes, I did phone to confirm my appointment was in hand and I should hear sometime in April re an appointment).

Now obviously I am new to this and whilst I await my Neurology appointment/confirmation I’m concerned as to what my next move should be. Job-wise, I’m screwed. I’ve been with the same employer for 10 years but I’m a data analyst and even typing this is taking me waaay too long so I can’t see me being of much use to my employer who luckily do 6 months full pay / 6 months half pay…and the 6 months half pay is just around the corner. Obviously that is of great concern.

THEN there is my ex-partner who was recently been diagnosed with Epilepsy and is now on all sorts of medications. Luckily he receives financial aid (possibly ESA & PIP?) but as I have temporarily moved back in with him to assist him with his seizures, I’m concerned my employment status may affect his own income even though I don’t contribute to his finances - we just use each other to convince ourselves we’re not ready for that final disappointment :slight_smile:

On top of this, I have a 4 year lease car (approx £200 a month). Im just past year 18 months of the contract.

Life insurance…too late?

Any advise would be appreciated to help this stress-head deal with my mounting issues.

Oh and by the way, I’m Gavin and I hope I haven’t rambled too much??

2

hi gavin

first up get advice re your finances and your ex partner’s too.

ask if they can affect each other.

i wish you well.

carole x

3

Hi Gavin

You seem to have convinced yourself it’s MS. And it might be, equally it might not. Unfortunately the diagnosis process is not going to happen overnight. When you do eventually see a neurologist, s/he will take a medical history from you (so try writing down what has happened and when to help) and do a neurological examination. If s/he thinks it’s needed, you’ll be sent for tests, usually an MRI at least and maybe others. Then you’ll have another appointment to discuss results. All this is going to take time. So try not to worry overmuch if you can help it.

I assume from your post that you’re currently off work, which is why you’re concerned about dropping to half pay. If you find you are incapable of working still, then you’ll have to sit down with your ex and discuss your respective finances. Figure out how the two of you can manage if you are both on limited incomes. I understand that when you are exes you don’t want your finances to be part of your current friendship / relationship, but if you are both struggling, then you may need to work things out together.

Meanwhile, bemoaning the lack of life insurance is putting the cart before the horse a tad just now.

I do hope your wait for a neurology appointment isn’t too much longer, and that the process is dealt with quite smoothly.

Sue

4

Well I had my appointment with the Neurologist today (Saturday 7th April) where I received confirmation that I do indeed have MS. I’ve had a few months to get used to the thought of this diagnosis however it still does take your breath away when you hear those words. Now to get some research done for myself because I havent looked up too much about MS to know what to expect re treatments, etc One. Day. At. A. Time :slight_smile:

5

Hi Gavin

I’m amazed that you’ve been diagnosed on your initial appointment with the neurologist. Without an MRI even, unless you had one between your referral and the appointment.

You’re right, it’s a massive shock to the system, regardless of whether you expected the diagnosis or not.

And there is a huge learning curve, I find this site and the MS Trust to be most reliable with regard to information about the diagnosis, treatments and symptoms.

Best of luck with it.

Sue

6

I saw my consultant back in February, he diagnosed me has having MS after a MRI scan but I am still waiting to see s specialist after 2half months. Having a bad day today just don’t want to do anything or see anyone. How long does it take to see a specialist?

7

Thanks for all your responses. I apologise for disappearing however, it was required to try and get my head around my new situation. On top of that, I started having a couple of “epileptic like” seizures on 12/5 and was rushed into hospital where I lost consciousness and had jerky movements of all 4 limbs. This, I still cannot recall at all!! I was remanded in hospital for approx 10 days - again, all a complete blur!

As a side note, freakily enough, my ex-partner actually had an epileptic seizure whilst I was being looked at so we were both admitted into hospital that night!!

Whilst in hospital, I had another MRI on 21/5 which showed “overall improved appearances of the tumefactive plaque” i.e. water showed up on one of my scars which is believed to have caused my seizures so I am now on 500mg Levetiracetam every morning and night, which has been referred to as an “anti-seizure” medication. I still have my frozen face, weakness on the right hand side of my body (arm & leg), balance issues, extreme clumsiness and memory issues however, I am no longer falling (so far) and my vision has changed - no longer double vision but I definitely have issues reading my phone/laptop.

I’ve also been told I cannot drive for a 12 month period. Luckily my spangly new leased car is being returned to the Finance Company and from what I can gather, there may not be any additional charges due to this being on health grounds. Oh and I have received confirmation of my half pay which started 10 days ago now so eeeeek!!!

Still taking it all in my stride just now though and trying to remain positive…to be continued? LOL!!!

Gavin xx

8

Blimey Gavin, you don’t do things by halves do you?

That all sounds like the most awful time imaginable. I’m so sorry.

Does this mean you’ve been diagnosed with Tumefactive MS? I just looked up the word ‘tumefactive’ and it seems that this could be a different variant of MS to those that we (speaking generally for those of us on this forum) are familiar with.

Have you been told what treatment you’ll be given apart from the anti seizure medication?

Do please let us know what happens next. And if we can be of any help, even if it’s just moral support, please let us know.

Sue

9

Hi Gavin, I have no idea what the technical stuff means but, while there seems to be a neurological component, it’s not ringing any MS bells with me. I can only echo Sue’s offer that you’re perfectly welcome here for any caring/sharing stuff we can offer you. Regards, Anthony

10

Again, apologies for my disappearing act. I think I’m finding my new situation rather challenging at best and I’m not really able to concentrate long enough to use my laptop with my new and definitely not improved, 2 finger typing!

I’ve become aware that my memory is very disjoined/vague at best - I haven’t read anywhere yet that this is a symptom hence my foray back online for research purposes. I’ve just googled it…it’s another MS thing apparently! Stuttering/forgetting words and struggling to get the words out - that’s also a thing!! Booo I says!

Tonight, I experienced my longest, conscious right-hand side of my body, spasm (noticeably on my hand, arm, leg & face) which was not only incredibly uncomfortable/sore but it lasted for just over 3 hours continuously and was partnered with an intense feeling of panic. Very unpleasant! My Ex was massaging my limbs the whole time whilst trying to keep me calm and help me control my breathing which certainly helped A LOT! Thank you Brian - I sincerely apologise for my bang out of order panicked temperament and Hallelujah I never sent you off on another seizure of your own this time!!

I haven’t heard anything from my Neurologist since the seizures (should I be contacting him with updates or is that making a nuisance of myself?) - I’m sure this is all in hand and tbh these kind of postings help document my main/recent issues so it is useful to look back on as a reminder when I next see him. My GP appointment is in 2 weeks!! I think I may need to give them a phone call in the morning to see what meds can be given to help with the spasms…if any? I was previously prescribed Dichloverine Hydochloride which I believe are muscle relaxants for my IBS but I was taken off them when I took the seizures - I’m thinking I should be put back on them??

Other issues?..my car lease…the bank want over £2000 + VAT for me to cancel my car hire contract. I sent them a strongly…well, firm but polite response that it would be cheaper for me to continue hiring the car that I cannot use for the 12 months of my “banned period”. I cannot claim to be thrilled at this and have advised them that I’m sure social media would have a field day with the kind of discrimination and financial burden they are prepared to inflict on me all because of my failing health. I’m yet to hear back from them!

I finally got around to phoning for a PIP claim this week so fingers crossed. Oh and I am pretty certain my job is a thing of the past unfortunately. Even the thought of it now seems to bring me out in weird uncontrollable panic attacks/spasms :frowning:

Sssue/ from what I can gather, I have relapsing/remitting MS. I believe the seizures were relating to water on a brain scar - at least, that’s my interpretation?!? Thanks for the support & advice to you and Anthony - mucho appreciato!!

Dammit, I forgot what else I was going to type. To be continued?..

Gavin xx

PS/ EVERYTHING TASTES OF SALT!!!

11

Aw Gavin, you are having the most horrible time. Not that an MS diagnosis is ever easy to get your head round, but you really do have it in spades.

With regards to spasms, you could ask your doctor (neurologist or GP) for a drug called Baclofen. It’s a muscle relaxant and is very commonly prescribed for MS spasms and spasticity. The problem some people find with Baclofen is that it does exactly what it promises, relaxes the muscles and then sometimes makes them weaker. Personally I wouldn’t be able to bear the bloody spasms without it. But if you do get some, start very gently on 10mg and then after a couple of weeks increase the dose. Obviously this depends on what mixes best with the drug they’ve already given you!!

I definitely don’t think contacting your neurologist is making a nuisance of yourself. Try phoning his/her secretary and asking if an email sent to the secretary could be forwarded to the neuro. Or just write a letter to the neurologist direct. (I tend to do this.)

When it comes to making a claim for PIP, I suggest you either get some help with the form (maybe from the CAB or other welfare rights advisor), and/or having a look at & maybe joining https://www.benefitsandwork.co.uk/ They charge about £20 for a year, but have the best, most up to date guides to both PIP and ESA (which I assume you will also be claiming at some point when your half pay runs out). Make sure you keep all letters sent to you about MS and try to get other evidence to support your claim. The key to claiming benefits is all about understanding the rules, making yourself very clear, and providing supporting evidence. Photocopy everything you send the DWP and send it recorded delivery.

If your variant of MS is relapsing remitting, you should be offered a disease modifying drug (DMD). These are designed to reduce the frequency and severity of relapses. Have a look at MS Decisions aid | MS Trust for information on all the available DMDs. Assuming you have an MS nurse, you should be able to discuss the best drug for you. Otherwise, make it plain in your letter / correspondence with the neurologist that you need to discuss drugs, both DMDs and for symptom management.

And may I say that your ex, Brian is a star. It sounds like he’s been totally supportive and a brilliant friend.

Don’t worry about time lapses in your responses. You are truly having the crappiest time and need to answer us when you can.

And the whole cognitive impairment thing, including memory lapses, forgetfulness, never finding the right word when you need it, being unable to multitask or concentrate on what’s going on around you is a sh*t symptom. I have it too. It drives me wild that I can’t remember what my friends say to me, the plot of a TV series or of a book I read a month ago. We commonly call it Brain Fog, and if you have the time and/or energy, come and join in our silliness on the Brain Fog thread which is to be found on the Everyday Living part of the forum. Both myself and Anthony (aka Albrecht Durer) are often to be found there. Don’t try reading from the beginning, it would drive you wild because it’s not necessarily very sensible or coherent. And it’s immensely long. Just try and follow for a couple of pages towards the end. And if you do join us on the BF thread, don’t believe a word Albrecht Durer says. Outside of BF, Anthony is kind, supportive and relatively sensible.

Best of luck.

Sue

12

Howdy Sue

I phoned my GP and was able to get an appointment at the doctors this afternoon. I learned more from her than my Neurologist meeting (look at 2 web sites) and my whole Hospital stay (although I did learn a lot from my discharge letter which is the only paperwork I have received which even references MS!). It seems they cannot give me Baclofen just now as my spasms are not more regular regardless of their length or intensiveness. I do understand why this would be the case however my GP advised me she will contact my Neurologist to see if they can get me an appointment to discuss this issue and see what they can help me out with. So far, I’m still only on 2 x 500mg Keppra (Levetiracetam) a day but I really am remaining hopeful :slight_smile:

Again, thank you so much for your advice - it really is appreciated and you are absolutely making this transition to my “new life” far less daunting for me. Mucho Appreciato!!

On a mildly amusing side-note, I was in bed trying to type up that previous response til 3:45a.m. Whilst trying to recall details of the evenings events, an ex-colleague randomly popped into my head. I couldn’t remember her name then forgot who I was thinking about in the first place. I gave up/passed out at 5am haha. Oh and whilst in Hospital, I was apparently tested for syphilis, B12 and more…I got the all clear - phew!! :slight_smile:

Brian says ta for your comment - he really is a star! Now on to learn all about this Brain Fogginess of mine!!

Gavin x

13

I contacted my GP on Friday due to irregular cramps/spasm flares I’d been having since my last posting - again all focussed on right arm & leg. Brian was instructed to go to the reception and pick up 15 x 2mg diazepam. I was advised they are addictive, etc but tbh I’d rather put up with any kind of withdrawal if and when if it meant not having to ensure a full-on spasm, totally raw, ever again. I’m thinking they are helping but I’m not sure?? At least they seem to have reduced any kind of intensiveness to any spasms so far but I don’t know, I’m still expecting a “build up Mount Vesuvias” type of spasm to kick in every single time :frowning: