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Terrified with hundreds of questions

hi everyone.

I’ve been browsing these forums for a few days and am thrilled to see what an amazing community you all have here. So I wanted to share our story and hopefully get answers to the questions you have on a new diagnosis.

Myself and my partner A recently just became home owners. The whole process was so stressful and completion dates kept being pushed back. One morning my partner woke up his vision had gone double. Now I work for an opticians and put it down to a visual migraine. The next morning it was the same so he went to the Drs. The GP was more concerned about his blood pressure, which was a result of a half hour walk to the Drs with double vision. They dismissed him completely. So he came to my work and one of our locum opticians saw him. He was showing definite double vision but the locum put this down to a virus. I wasn’t happy so waited until the following day to speak to my boss who insisted he go immediately to the hospital eye department. His vision had deteriorated significantly in 24 hours and a fresnel prism was given to him. He was found to have optic neuritis. Due to As age (28) they wanted to investigate further so he had a MRI scan booked in. This took ages to come through and about 8 weeks after getting his glasses his vision had returned to normal. The MRI scan showed lesions on his brain so off to neurology we went. Unfortunately this appt took ages to come through. I suffer with anxiety myself and due to the stress with the house move was on happy pills. With the added stress of worrying about A, my anxiety got worse. We went to the gp together and they advised us to prepare for an MS diagnosis. It felt like our world had fallen apart. We just brought a house and wanted to start a family and now this terrifying disease we know very little about will change everything.

When we eventually had his neurology appt. looking back at As history the dr has identified 5 different ms attacks. 2 over the last few years then 3 this year, ranging from leg numbness, hand and arm numbness, his vision and sickness caused by sudden head movements causing his vision to go double. The dr has diagnosed him with mild MS.

Now I’ve rambled on for ages (apologies) my questions.

What is mild MS? He said there is no need for treatment at this moment in time as A is fit and well but that treatment may be needed in future. Does this sound like relapsing MS? In which case is that better? What can we expect from everything. I’ve read up a lot but find a lot of what I read terrifying.

I love him dearly and will stand by and support him whatever happens. We are aware that while he is doing ok now, this could change.

I feel selfish posting this as its him that’s going through this. But how do us partners come to terms with such a diagnosis. I’m so scared of what might happen to him and seeing his go through any pain.

This is doesn’t even make any sense. I’m sorry. I’m just scared, anxious and want to know what will come next.

Thanks in advance

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Dora-Bella,

Being terrified at this point is not an unreasonable response. There are no certainties and without the benefit of 20/20 hindsight it will be tough to work out how to deal with this. I can not say what will come next for you both but I can tell you a bit about my and my wife’s experience and what we have learned. I hope that this is of use.

I was diagnosed in 1991 with “mild” MS having had spells of being bed bound. Later I was told the it was relapsing remitting MS

The only medical support I was offered was steroids, these were used to help “kick start” and assist my bodies immune system and help in the natural healing after an attack. My neurologist just made me feel guilty that I was not that unwell compared to other patients.

When I started a very long relapse in 2006 (with symptoms increasing slowly but steadily) I tried to get more help from my neurologist but he seemed to think I was being awkward.

I found another neurologist via a recommendation; I saved up and saw him privately, he did some tests and diagnosed secondary progressive MS. He referred me to his NHS practice. He explained that there were no suitable disease modifying drugs or therapies but because I trust him I could accept this more easily. He also told me that had I presented earlier I MIGHT have had some more DMD options.

We later heard about a drug trial for DMD related to SPMS (to see if a drug currently licenced for RRMS might slow to progression of my condition. I am still in this trial.

We also found an MS nurse locally who I also trust. She got me onto an “energy management course” which helped a lot.

The points I am trying to make are:

Don’t panic - things are OK now and this might be the case for ages.

Try to ensure that you are confident in and trust your GP / Nurse / Neurologist

Don’t be afraid to make a fuss. If something needs doing and is possible, get the support of your team and get it done

I will shut up now. All the best Mick

Thank you so much Mick for taking the time to reply to me. I really appreciate you sharing yours and your wife’s experience with me too.

Sorry to hear you had such a rotten time in the beginning but it sounds like you’ve found people you can trust now which is great. It’s also reassuring to hear we could be OK for a while too.

Do do you mind explaining the different types of MS. We only know it’s “mild”. The neurologist we saw was brilliant. He took his time with us and said that he was impressed to see how well A was and how his balance is spot on for now. My partner asked if MS will eventually kill him, which broke my heart. The neurologist was supporting of both of us which was good too.

He said no medication is needed at the moment but it could change. He spoke about possibly using steroid antibiotics to assist his recovery after attacks. But that’s if he has another attack within the next few months.

I I feel the neurologist was brilliant but it’s not until you reflect on what’s been said you have all these questions.

Again, I appreciate you taking the time out to reply and share your experience :slight_smile:

Dora-Bella,

I am only expert in my own style of MS. In my experience there are as many styles and flavours of MS as there are people. You will find good technical info on this website and that of msuk.co.uk

The only flavours of MS that I have experience in are Relapsing and Remitting MS (RRMS) and Secondary Progressive MS (SPMS) Once again there are as many variations within both RRMS and SPMS that it would be wrong to try and give you “hard and fast facts” I am glad to hear that you are happy with the neurologist.

I would still try to find a specialist MS nurse who can be contacted when needed. I know from experience that it is good to get a knowledgeable and experienced view. When anything happens it is easy to panic at the possibility of another MS symptom, I once thought I was having an attack but it turned out to be a painless migraine. I only found this out after a call to my nurse, huge relief all round.

Whilst I would not turn the condition into a hobby I would keep an eye on news and research so that you can speak to the neurologist with good knowledge.

I would advocate enjoying everything to its fullest extent. I would also live for today.

Sorry I can not offer more definite info but there are plenty of people in these forums who have a wide range of experience and are happy to share their knowledge.

All the best Mick

I am sorry that you and your partner have this load of trouble dumped at your door. It is an awful shock to the system, I know.

The best source of factual info that I know of is the main part of this MS Society site - see the ‘What is MS?’ orange tab at the top of this page. The MS Society’s information is factual, reliable and clearly written. You and your partner might find it helpful to have a read if/when you feel able to find out a bit about what you are dealing with here. You will also read about treatment options.

This forum offers something different - a good place to find people who know what it feels like to be in this boat. I have, over the years, drawn great comfort from knowing that there are people on here to whom I do not need to explain difficult emotions or the impact that MS has on the individual and family - they’ve been there, so they know.

There’s no two ways about it - an MS dx is rotten news in any language. But most of us manage to make a good life for ourselves despite MS and its difficulties. The early days tend to be pretty tough, for reasons you know all about! But the shock passes and some sort of normal life reasserts itself - faster than we think, sometimes. It might not be quite the ‘normal’ that we were expecting and had planned for. But people tend to deal with whatever comes along and make the best of it. In the meantime, hang on in there and try to help each other though this heavy weather. The storm clouds will pass in time - really, they will.

Alison

Hi and welcome,

The top MS neuros are now saying MS should be treated early and the wait and see approach should not be used any more. Your partner has had identified attacks and so is RRMS.

Go on to the Barts MS forum and the Prof G is trying to get all neuros to treat early and the phrase he uses in “Time is Brain”.

Basically if your partners neuro wont treat him then find another that will - preferably an MS neuro.

To be honest if your neuro uses the term “mild ms” or “benign ms” then he is just behind the times.

It is worth knowing that not all ms lesions cause symptoms so you may not know at the time that an attack is happening.

Moyna x

I do not think this is the whole story, Moyna.

For sure, that is Prof G’s view (note for the OP: Prof Giovannoni is a well-known senior MS specialist in London who produces an excellent and highly opinionated blog on MS matters for a public audience). But hitting MS hard and early (which he advocates) is not exactly mainstream current practice in this country. It would be wrong to imply that the OP’s neurologist was not following current UK norms just because he/she wasn’t a Prof G disciple. ‘Wait and see’ remains a perfectly respectable approach, where the neurologist judges it to be the best option for the patient.

Prof G has strong opinions and expresses them eloquently. Maybe he’s right and maybe he isn’t, but his notions on sending in the pharmaceutical SAS with stun grenades at the first sign of MS trouble is by no means a universal approach in the UK, or even a very common one, I suspect. For what it is worth, I completely agree with him! But the OP’s neurologist might not agree with him, and he/she knows a great deal more about it than I do - and a great deal more about the individual patient than Prof G does).

Alison

Very interesting, I have been told to “wait and see” by various professionals. My response has varied massively depending upon my level of trust and confidence in the professional. My confidence and trust are supplemented by trying to inform myself about MS and being able to have conversations with the professionals and being comfortable enough to challenge them or be challenged by them without feeling bullied or patronised. It is important that listening is a rwo way process.

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