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Our Daughter given the news that its possible MS

Hi,

our daughter has been struggling with her eyesight for the past few months, amongst other symptoms. She was referred to an MRI and today she saw the consultant ophthalmologist. Prior to this it was indicated to her that it could be MS. Today the consultant said it was very likely but it needs to be confirmed by the Neurologist. She is a beautiful girl and only 27 years old. We had been expecting it from other conversations but are still holding out hope that the Neurologist will say otherwise.

The issue is that we have been waiting months for the Neurologist due to Covid. We keep asking his secretary and she said that our daughter is on the list and he will get around to her but she has no idea when.

Financially we are ok and could afford a private consultation. The secretary is back on Thursday and we will phone again. The consultant called today on our behalf but there was no reply. Everyone is very kind and apologetic but we are not getting anywhere.

We are just clinging to each other at the moment and have no idea what to do. The Neurologist is Dr C Hillier at Bournemouth. He is an MS specialist.

We are devastated and just need some friendly advice on anything at all we can do?

Also, is she going to be worse off at her age with the additional wait?

thank you ever so much for any help that you are able to give

Thank you

Hi barkest. I’m really sorry to hear you are going through such a worrying time. As a parent I understand your pain. I have recently seen a neurologist privately. I made the decision to request a private referral after the GP who identified there were probably neurological issues was very honest that my referral could take a very long time in the NHS queue. My symptoms are mild but they’re there. The GP was supportive of my choice. It meant I got to see someone in a matter of days and I don’t regret spending that money as I had already lost 2 months with another GP not taking me seriously (or so it felt). I’m now waiting on an MRI - I decided to revert to NHS for that as I wouldn’t be able to afford long term private tests and follow ups but it was worth speeding the first stage up just to feel like at least things were moving closer to some kind of diagnosis. I didn’t get any flack for then requesting to switch back to NHS, I think people are understanding of the pressure on the system right now and also, of the anxiety long waits create for people. I just searched for the nearest consultants, chose one and let my GP know who the initial referral letter was to be addressed to.

Hi ,I was diagnosed late aged 57 yrs after (what I now know was )being misdiagnosed for yrs my first recollection of neurological episode being around 25yrs old. I was made to feel like a hypochondriac .Long story but now on disease modifying medication (dmd) Ocrevus infusions 6 monthly.

DMD can slow progression and having knowledge about ms improves quality of life and your daughter will have all that and still be able to live a good life with all that life brings for us all.

My only sadness is that I wasn’t diagnosed /treated earlier,I m still able to enjoy life and function ok but with some degree of disability .

If you go private initially for the consultation you can then go on to NHS ,its probably queue jumping but if you don’t do it some one else will and I certainly would if it was my daughter if you can afford to because in this current climate the nhs is swamped and waiting lists getting longer.

All the very best

Thank you both for your replies. No sleep and constant feelings are taking their toll. I agree with your approach and we have decided to ask the secretary, when she return on Thursday, where we are and depending upon her answer we will go private. If we cannot get in-touch with her, e.g. she does not answer the phone or something then once again we will go private.

Our reluctance was the concern that the private consultant would not be able to access her nhs mri scan. I guess they can if we ask the right people?

Our daughter is stronger than both of us at the moment so we need to get ourselves together for her sake.

thank you very much again I really appreciate it

@Kreste yes my daughter felt the same. Last year she had an episode that was put down to neuralgia but now it seems that was not the case. Could I ask how your life from 25 yrs old has worked out health wise (both mental and physical)? thank you

Barkest, sorry to hear about your daughter. If it is MS then take some solace from the fact that is has been identified early and can therefore be treated early. The evidence suggests this is the best approach. Also, if you go private then it may help to see a nuero that also works on the NHS in that she can be quickly moved back to start DMT (treatment drugs) if her diagnosis is confirmed. That is what I did. It still took some time but moved things forward a bit quicker and also found it helped to be doing something proactive. Here’s hoping its something else entirely but if it is MS then come back and ask any questions to the forum. You will always get a reply. Fingers crossed

You’re both such wonderful parents to be doing all you can for her and supporting her. I’m 27 and awaiting a possible MS diagnosis, I’m trying to see it that the silver lining is that its being caught early.

Hi Barkest

My parents helped me to go private as due to the pandemic the waiting list to see a neurologist was a year in my area.
At first I felt a huge sense of guilt being exasperated up the NHS list but now I m eternally grateful as my diagnosis is SPMS I m awaiting now to go onto my DMTs. I feel now each moment is so important to grab opportunities and live life to the best of my own ability.
I hope your daughter stays strong optimistic and positive whatever the outcome x

all the best Caz B

Your daughter can request from the NHS a copy on disk of the MRI scan and report. It is free.

Hello barkest, I feel your pain and anxiety. This is not how you hoped your daughter`s life would go.

I have had Spinal PPMS for 23 years and it took 22 of those to get a full diagnosis. But along the way, I was wrongly diagnosed with something similar, which carried a 50% chance of being passed to my offspring ie 2 daughters and 4 grandchildren. The thought of this really did my head in.

So I was relieved to be told it wasnt that, but PPMS.

I began with mobility problems at the age of 45…I`m 68 now. I was shocked, scared and bewildered. How was it possible to go from being a fit, active and very busy woman to a full time wheelchair user in a couple of years?

But you know, somehow I managed to get my head round it eventually.

I am now worrying about my eldest daughter who is 48, recently diagnosed with lupus, arthritis and other issues.

Life throws these challenges at us…when they first hit, we can not contemplate managing and coping…at all!

So with your dear daughter, you will go through whatever testing you have to and go from there. I know we currently have the added problem with covid, slowing down appointments.

I saw my first neurologist privately, because there was a 10 month waiting list on the NHS. I was transferred to the same consultants NHS list and that is a common occurrence...please dont let anyone make you feel bad about that. It cost £200 back in the late 90s…and I dont think it has changed much, from what people say here.

So if it turns out your girl does have MS, find out what medication she may be able to try. There are several DMDs ie disease modifying drugs, which slow down progression and can reduce flare ups.

There are many people with MS, who never need a carer, a wheelchair, or are unable to work. Life may be different, but with support of a loving family like your girl has, she will find her way, learn how to pace her activities and live a great life.

I wish you all the best

Boudsxx

Thank you all very much.

My wife left a long heartfelt message on the secretaries phone this morning and someone called my daughter later on in the morning. I was with her at the time. Her records had been moved from Bournemouth to Poole in mid January. We did not know and had been pushing Bournemouth. I managed to find the new secretaries name and it was an answer machine. I called every 10 minutes throughout the afternoon. Eventually she picked up and my daughter spoke to her. My daughter is very softly spoken and not at all pushy and I could not get involved as I do not want her to feel under pressure. The secretary has now sent an email to outpatients and explained that our daughter is at the top of the list, although we are not sure what that means. The consultant does not have a private clinic as she asked. The secretary said ‘give it another week’. My wife will call the outpatients tomorrow rather than wait and we have the name of another private consultant we will call early next week if there is no progress.

She continues to be positive and her workplace have been brilliant and I can’t thank them enough.

I can only imagine the pain both mentally and physically people are going through whilst they wait, during Covid, for an appointment.

We are hoping that with a firm diagnosis comes a pathway with some medication.

Her current physical state has improved and she can now see much better having had weeks of not being able to see very well. She can’t really manage on her own which is why we both take turns each day as she lives with her Fiancee who has no choice but to work. Her hands tremble a lot and although she tries to hide it we can see the distress she is in.

Thank you very much again

Just as an update

She was given an online/video appointment on the 1st of March. My wife called the outpatients a couple of times and then the secretary again, who btw is lovely, and she said that if anything sooner came up she would push our daughter up. Not 10 minutes later we get a call that she is now on the 19th of Feb. Its online which is good for us as we can be with her as the hospital doesn’t allow ‘guests’ at present. Also being in her own home when she gets the diagnosis will be much easier for her.

Thank you again for your kind replies

Steve

@Aims I wish you the best of luck and I have my fingers crossed.

Hello Steve

I’ve just read through this thread and thought I’d add my twopennorth.

It’s great news that your daughters online/video appointment has been brought forward. Not long to wait now. And the fact that it’s NHS is actually much better. It means that she should be able to go straight onto disease modifying drugs (DMDs) should the consultant neurologist think they are appropriate for her. Also, should other tests be needed before a formal diagnosis is made, these will be funded by the NHS. It’s the tests (further MRI, lumbar puncture, visual evoked potentials, nerve conduction) and the DMDs that cost the big money. The DMDs particularly cost thousands of pounds per year.

Can I suggest that you (your daughter perhaps together with you parents) write down a timeline of what has happened to her over the last couple of years in advance of the consultation? If you think about all the symptoms that you feel are connected, how long each took to take effect, how long it lasted and roughly when it was? This will help her to detail the history and make the most of the consultation.

It sounds as though (assuming it is MS) that it’s the relapsing remitting variety. This is where relapses (aka attacks or flares) come with a random collection of symptoms, last a period of weeks or months then go into remission, where there is partial or complete recovery from the symptoms. About 85% of people diagnosed with MS have RRMS.

If your daughter is diagnosed with RRMS, she’ll be able to qualify for DMDs. These are drugs designed to reduce the number and severity of relapses. If you wanted to have a look at the wide variety of drugs in advance of the appointment, see this webpage: https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

The good thing about DMDs is that nowadays there are a large number of drugs available. With luck, drugs, physio and the help & support of an MS nurse, your daughter should be able to live a more of less normal life. Chances are she will be able to just get on with life, career, love and the future as happily as a young woman should.

Whatever happens, the people of this forum will be here to give you and your daughter a sympathetic listening (virtual) ear and assist with information and directions to helpful websites as navigating your way through the MS diagnosis process can be mind boggling!

Best of luck

Sue

Hello I’m so sorry to hear about your daughter I hope she has been seen by a neurologist by now ? I was diagnosed when I was 22 6 months after my son was born I am now 32 and am doing just fine. Dr hillier is my neurologist and has been since my dianosion in 2012. I can honestly say he is amazing and has helped me so much over the years. It can be hard to get a appointment with him even more so since covid but he gets there in the end I am moving soon but I have chosen to stay in its dr hillier even more though it means I have to travel further to see him.

Hi barkest

I havent been on line for some months (actually since they changed to site format) but have just read your thread about your daughter.

You asked some months ago how i have been over the years and honestly regards my health a bit up and down but generally OK ,i had 3 children who are all now grown up and 7 (yes 7 ) grandchildren all under 10 yrs .

I have worked all my life as a psychiatric nurse which I loved ,i still have my old pony who i still able to look after .looking back I had bouts of illness which I now know some were down to ms but misdiagnosed.

It was only when i really had a bad relapse aged 55/56 which lasted months unable to carry out all daily living that investigations led to a formal diagnosis of ms with old and new brain lesions showing on MRI and i was immediately offered Ocrevus dmd.

It was only when i finally had the diagnosis that I felt relief that "it wasn’t all in my head " as my GP thought .However to be fair he was some part right the lesions found were all in my head !

Although no one wants ms your daughter is young and medications are now available to slow progress and live life and ms services are also valuable.

From my own experience stress is a big factor in ms and needs to be managed.I met some wonderful others of all ages with ms when i attended for infusions and that led to me joining online zoom Pilates (dragon fly Pilates )it helped me with anxiety and core strength )

I have recently retired and still enjoying life albeit I have had to slow down other wise ms lets you know ! im still able to walk although not as far and on uneven ground need a stick. i still enjoy and function in family life and all that brings but knowing your limitations is very important.

Its not easy for ms /family to understand the very odd and unpredictable nature of ms because it can be so individual and quite honestly bizarre at times but ms is not a terminal illness and your daughter will live life with or without ms and she has a support network in place.

It may be a bit of a roller coaster of emotions for you all and thats part of the course but ms is now more understood and treatment options available.

Sorry this is bit long winded but i just wanted to say all the very best and im living life as will your daughter.

Just take her away from the computer. Develop her vision without gadgets but special games, sports and so on. For example, play volleyball with her or buy a wooden balance trike zebra so that she tries to concentrate and thereby develop her eyesight. If it does not help, then you should consult a doctor, perhaps her lenses are damaged or something like that. But anyways in our time it is can be easily treated, so do not worry too much. And yes, activities like pilates, yoga or meditation can help people with anxiety and depression. Also as you said, it develops your core strenght, coordination and body stretching as well.