In the family and a question

Everyday living
1

Hi Peeps

My daughter has been under investgations for fatigue, balance problems, tingling hands and legs, etc, etc, etc… and we have been back and forward to the doctors to try to find out if she can be helped. After numerous visits and tests on her heart and lungs, anaemia, etc, etc… which turned out to be okay, we’ve now been told she has a low white blood cell count indicative of an autoimmune condition. The doctor had a ‘quiet’ word with me (as he’s referring her to a Neurologist and an MRI) and said “Would you want her to know?”. So it seems he’s thinking along the same lines as me (as MS is familial in our family). My daughter is 19 and is more like my side of the family - she is sooooooooo lovely. There is a liklihood that she has MS because the symptoms she is displaying and because of our familial history. I 've cried so much and am holding on to the hope that its not MS.

So my question is: Should doctors leave her with an unconfirmed diagnosis and in limboland or should they give her the diagnosis even if it is MS?

Life can be so unkind and I’m hurting so much for her.

:frowning: Mary

2

Hi Mary I understand your pain over your precious daughter, life is very unkind. However, if and that is if she is diagnosed with MS it is not the end of her life. She can still do all the things you dreamed of for her; get married, have a family etc. It just means she has to make some adjustments in her life. Do you think she would want to know what is happening to her body? Wouldn’t you? She has a loving family to support her and help her through this. Do not despair, she will get through it with you by her side. Take it one day at a time. Thinking of you both at this difficult time, Teresa xx

3

Thank you for your reply Teresa,

Yes I feel as you do and that if it is MS she should know and the support would be there for her. I guess the drs question flumaxed me.

It’s just so hard to think that she might have to go through the difficulties that MS causes (my mother, sister, aunty and myself have all ended up in wheelchairs). She’s a performing arts student and this could really alter her life ambitions. I guess I want it all to just go away and if wishes came true that it all would…

I’m hurting.

But like you say if it turns out to be MS adjustments have to be made and yes life goes on. Its just I love her so much and don’t want her to have to go through this.

I really hate MS

Love, Mary xxx

4

Morning, I’m sorry to read this, and feel for you, I’ve been DX 5yrs now, after about a couple of years I was introduced through a friend to a lovely lady who has had MS for nearly 40yrs, she started to display symptoms at the age of about 16, now back then they didn’t know what they do now, the lady in question was DX at 21, she had just quilified as a teacher, the nuero told her parents, and her husband to be, but they never told her, this lady didn’t find out until she decided to have a family, was advised against it, couldn’t understand why, and then was told about the MS, at the age of about 23, and she told me she found it very hard to forgive the people who already been told, ok this lady never worked again, but she went on to have 2 children, still gets about on her own, still takes pride in her self and her home, and yes her and her husband are still together, I’m sorry to go on so long, but I thought it was important for you to know this, yes it’s a hard thing to do, and I hope you come to the right choice, good luck, Jean x

5

Hi Mary, I really feel for you. I first had symptoms aged19 and went undiagnosed until 6 years later in 1995. I am 42 now. At that time I wasa psychology student so perhaps I had more “understanding” of what might be wrong with me than someone else might have. I have to say there were very many times during that 6 years when I did not want a diagnosis. I worried about finishing my degree, getting a job. In the end I finished my degree, got a job, and still work there today! When I finally was diagnosed my dad said that that was good and with a diagnosis I was much better off than I had been before, how right he was, it was a chance to move on. Do you think your daughter would want to know? There are dmd’s available which may help but obviously if she doesn’t know she doesn’t have this option, so this must be considered. You have done ok with ms, Mary, I think, without actually knowing you, guess I have too. Also if she goes undiagnosed will it be in her mind all the time, she may wonder what is wrong and that will hang over her, so may be better moving on with a diagnosis. I also wonder if you have other children, might your daughter having a ms diagnosis impact on them too, they would then have a mother and sister with ms. This might hang ov them. Oh Mary, I don’t envy you, it is not an easy question or answer for you. I have children too and I hope I never have to go through this. Cheryl:)

6

Thank you for your Jean, that ladies story sound very similar to my own as I’ve had MS from a very young age (our family history with MS was all taboo and I think if I’d have known the full history I wouldn’t have had children - I should add also that my niece (in her early 30s) is also in Limboland now).

I agree with you that it should be out in the open. If it is MS I don’t want my daughter to go through years of Limboland as I think it is an extremely difficult place for people to be left in. I think I’d like her to know as there are so many new medications and support she can access if all is out in the open. I really feel for people left without a firm diagnosis when the overall probability is that it is MS.

Still the research being undertaken might provide a cure for my daughter and niece (its too late for me as my damage is now too progressed and all the rest of have passed on). I guess I’ll have to put my hope in a potential future cure and until then give all the love and support I can if it turns out to be MS.

Love, Mary

7

Hi Cheryl

(sorry I’ve not used the quote option before so am hoping I have done this right but if not please forgive me)

I know what you have been through too as I didn’t want my diagnosis confirmed until after my degree and career was established either. And yes the DMD options would be open to her if it was confirmed rather than nothing being done and at least it would give her the choice of whether or not she wanted these options.

My son (eldest) has signs too but doesn’t want any more testing or any confirmation and is dealing with RR symptoms well presently (he’s completing his doctorate). My middle child has no sign - 1 out of 3 ain’t bad!

It’s a complete nightmare.

Love, Mary

8

Hello Mary,

I’m sorry to hear this - but incidentally, it’s rather unusual (I’d always assumed impossible, actually) for MS to show up in the blood, so might they mean some other auto-immune disorder?

Although she’s your daughter, and you will always feel protective of her, I’m afraid, at 19, your daughter has the same right to information about her health, and to make decisions about it, as any other adult!

Although I’m sure the doctor meant it in the kindest possible way, I’m actually quite shocked that he asked you whether your adult daughter should be told! Although it’s not news anybody wants (I, for one, am glad I didn’t find out any earlier), the fact is there are treatment decsions to be made. Your daughter is of an age when she is competent to make those decisions (with the support of you and the doctors, obviously), therefore it is (IMO) wrong to keep the truth from her, and to deny her the choice.

How’s she going to feel if, in years to come, she finds out she could have started treatment at 19, but because you and the doctors decided to hide it from her, she wasn’t given that option? I think this is simply unethical.

Even if they think it is PPMS, and therefore, in effect, untreatable, who’s to know whether she might want to pursue alternative therapies (diet, LDN etc.)? If she’s not told, then she doesn’t have that option. I’m not particularly optimistic any of those things help, but at the same time, I think it’s a decision for the individual, and that they ought to have the information to make the decision. If someone isn’t told of their condition, they can’t explore things other people have found helpful.

Finally, have a browse of the newly diagnosed and undiagnosed forum (formerly the “Limboland” forum). By and large, people there are not happy to be in limbo - knowing full well there is something wrong with them, but not being able to say what.

If your daughter had not yet reached the point where she knows something is wrong - enough to go to the doctor and have tests - I might say: “Hmmm, might not be anything. Let sleeping dogs lie, and wait to see what happens.”

But as symptoms are obviously bad enough for her to be wanting answers, I think it’s past the point where you (or she) can ignore it. How’s she going to feel if she has all these tests, but still comes away not knowing what the matter is? Many of us on this forum have ended up worrying we had psychiatric problems, because nobody could explain our symptoms. If you and the doctors know something has been found, please don’t let your daughter struggle with the belief it might all be in her head.

Tina

x

9

I guess if people read your story Mary, they will easily see that there can be a genetic link in MS. Yet, other families have no one else who suffers from it. You have all been so unlucky. I am so sorry that your son also seems to be showing signs of it too. You have come this far though, dealing with your own problems. You are strong enough to help your children with theirs. Cry the tears you need to when your children aren’t there - when they are, try to keep your chin up, I know it must be really hard but if they see your strength, it will help them to develop their own coping mechanism. Grit your teeth, this MonSter won’t beat you! Teresa xx

10

Hi Mary,

I really feel for you, becuase i am going through the same, as you, my 18 year old daughter has been having the same problems since she was 16,shes had all the usual blood tests,and we have gone so far down the road,but i am holding back,becuase i am hoping if she does(and i really feel she has ms) that it will stay quiet for a lot of years yet ,

my son also started with similar symptoms at the age of 18 and hes had 2 quite bad episodes, with loss of vision in his only good eye(hes blind in the other one)and not being able to stand,he went to a neuro and has had brain scans, a few years back, but hes not too bad at the moment,so for now he likes to think that he doesnt have MS,

It broke my heart in two, and still does to think they have ms,and like you i couldnt stop crying,for a long time,its so hard to know what to do for the best, but you know your children the best and you will know whether to tell them or not,

With my son, when he first started with the symptoms i pushed it to the back of my mind, and ms was never mentioned, and i thought to myself, i will wait for him to ask me, which in the end he did ask me, if i thought it might be ms,and i had been keeping it to myself for many years,( as hes 34 soon) so you can imagin what my reaction was, after keeping all the pain in for all that time.

i told him i had suspected it for a long time,but didnt want to frighten him,and he understood,why i didnt tell him, i also had my own reasons too, i didnt want people to think i was being neurotic over it, when i first started showing symptoms, when i was a teenager up until my ms diagnosis,i was labeled as being neurotic by the gps,no one would ever take me seriously, until my diagnosis,and i was left feeling so frustrated with a lot of people, medics and family,so i soon learnt not to mention a lot of things,and i know when i mentioned it to my dr, when my son was going for brain scans and seeing the neuro,he thought i was just in a panic, when infact i am the most calm person in a crisis, you could imagine.

The drs say our family would be just unlucky if there was 3 of us with ms, but i know of families with more than 2 or 3 with it.

So i keep most of it to myself,which isnt easy, as you know,and pray to god that a cure will come in my childrens lifetime.

jaki xx

11

This must be an incedibly tough thing for you to deal with. I’ve got two fantastic teenagers and the thought of them going through any of this breaks my heart, but, at 19, your daughter is an adult, legally anyway!

A friend of mine is seriously affected by MS, she’s in her mid fifties. In her early twenties she developed symptoms, went through a load of testing, moved house several times, and suffered periods of ill health throughout her adult life. Her health deteriorated enough for her to need to give up her job, she did marry and have kids, but her marriage broke down under the strain. She was referred to psychiatrists, counsellors, you name it, as she was told it was all in her head. She re-married and had more children, now in their teens. When they were very young, she woke one morning unable to move her legs, and shortly afterwards was ‘diagnosed’ with MS. She eventually accessed and went back over her medical records and discovered she had been diagnosed 25 years ago, but not told!!! Her second marriage ended, she’d lost her career, had more kids, endured years of ill health, mental torture, and financial difficulties all because someone had neglected to tell her, and then ‘lost’ her medical records.

Would things have been different had she known? You bet. In every way. Knowledge is power.

12

Oh Mary what a worry, what a nightmare, I send you love & support plus a few (((((((((((((((((((((((((((((((cuddles))))))))))))))))))))))))))). Your daughter will want answers, just like you did, yet it would seem holding back any diagnosis might give her breathing space to enjoy her life to the full, whereas helping her through it, with honesty from neuro I feel is the best way forward. There are now DMD’s which help and Im sure because of her age she would have access to them easier than us older msers.

If it were me and my mum knew something I would know. I would have hated her not telling me anything including the neuros. What is important is the fact she might level off and never get any more symptoms for years to come, nothing is concrete with ms if indeed it is. She will need to know that regardless of what diagnosis she is given she must continue her life as she has mapped out. Im sure that is what your gp was trying to say, will it impede her plans by telling her the truth because sometimes not knowing we go blindly into the future.

Be open, honest and carry on being the very loving caring mother you are. You are a fighter as she will be, shes got your genes. If she follows in your footsteps nothing will get in her way - and Im sure you will make sure her life is as full as yours is Mary, and its possible even with a diagnosis of ms.

Lots of luv

bren

xxxxxx

13

I am really confused by the fact that the GP spoke to you about this.

Is your daughter learning disabled or have some other condition that means that you make her medical decisions? If yes, then I guess she should know enough not to be scared, and to be able to accept whatever life brings her. If no, then she absolutely should be told.

Ultimately, the right choice is whatever gets her access to the best treatment, meds and support.

I really hope that everything works out for the best. I have a small understanding of what you’re going through - after a very scary time, my daughter turned out to be vitamin B12 deficient. I hope your daughter’s troubles turn out to be as easily treated.

Karen x

14

This isnt unheard of with ms, my old gp told me he had a patient who had ms for nearly 30 years before he was told, both the dr and his wife thought it best no to worry him. i couldnt believe it when he told me, the same dr also said that he thought that i had ms a log time before i was told,and someone else found out by taking a look at her medical notes, that she had ms, i was really angry for a long time after i found out,that it had been kept from me.

15

Hi Tina

I totally agree with you and I was shocked by the Drs question. I want her to have the answers to why she is suffering these symptoms. We are hoping its not but my daughter has been looking on the internet and trying to find other things it could be and some of those arn’t too good either.

I have told her all about MS to prepare her just in case but also told her not to worry until all the tests are completed - she’s been ill since 2007 when she got Glandular Fever and we are hoping its something still lingering from that - but the timescal now is suggesting its not. I’ve led an active life even though I’ve had MS for many years I’ve only been wheelchair bound since 2007 so she knows life does not end with this doagnosis.

The blood test just showed a low white cell count which is indicative of an autoimmune disease but it does not necessarily mean it is MS on its own but her other symptoms and family history are leading the Dr in this direction. I don’t want them to leave her in Limboland as like you I don’t think that is a good place for people to be left in and can cause other problems as you suggest.

So now I guess its a waiting game for the MRI and other tests.

But I am so very worried

Love, Mary

16

Thank you Jaki

You have so much insight because are circumstances are so similar. I’ve told all mine about MS so was shocked that the doctor asked the question. I like you wish it would all go away and hope for a cure and I think that’s what keeps me going for my children. My MS is too far advanced now but someting could still happen for our children.

WE have to live in hope and cry alone.

(((((((Big hugs))))))) Mary

17

Thank for your reply I would agree with you and that it is best to know that’s why I couldn’t understand the Dr asking the question. What an awful way for your friend to be treated and the dreadful consequences to her life. If she has known she could have accessed the support (at lease in the more recent years). You are so right knowledge is power.

I wonder how many people haven’t been informed because of the supposed good intentions of not telling someone.

Love, Mary

18

Hi Sarah

Thank you for your kind and thoughful answer. It is a continual worry and I too have looked for signs and hoped when I saw them that it was something else - I think I’m still trying to hope it could be something else something not as life debilitating. At the same time I’ve told my children that I’ve had a really good and active life even though I’v had MS since my early 20s and the doctors think I had my first relapse when I was 4 years old. Its only the last few years I’ve been confined to a wheelchair so even if an MS diagnosis does come about - my children know that a good life is possible. I always think it is best to know and so have difficulty with the Dr suggesting it might mot be best to know.

I hope your daughter doesn’t have any further sysmptoms.

Love, Mary

19

Hi Karen

No my daughter is at university and so I cannot understand why the Dr would have a quiet word with me. She doesn’t need protecting becuase she knows about MS. So I’m confused too. I think its best to be open and if it is MS (I still hope its not) she’d then have the choice to access DMDs if she wanted them or other therapies if she preferred LDN, HBOT etc.

I just thought it was an odd situation to be in and wondered how others would think about it.

I’m so pleased your daughter was B12 deficient as it must have been a great relief to you both. We checked B12 too and that with other things have all been dismissed now - its a waiting gain but I’m still living in hope that it may not be MS as long as its not something worse than that.

Love, Mary

20

Hi Bren

I’m not sure if I am using this quote thing correctly but hopefully you will receive my reply.

Ww were hoping that her symptoms were a lingering Glandular Fever problem as that can stay in your blood stream for a long time, but she had it in 2007 and the Dr says its not showing it her bloodstream but she has a low white blood count so something is not right. I think with our family history and her symptoms our Dr thinks it is MS and that’s why he had a quite word. But I think she needs to know it might be and have been open with her. I’ve tried to put it as possitively as possible telling her about all the things I’ve been able to do in life even though I was around her age when I got my first formal diagnosis. The options are better now too becuase new medications are being developed which as you say because of her age she might be lucy to have the opion of should she wish.

So I’ve been optimistic in front of her, but have cried myself to sleep with the worry of it all and know the difficulties she’ll face if it turns out she has MS.

I’m hoping that it’s not MS but the I’m also worried it could be something worse, but the again it could be something than can be cured.

I live in hope

Love, Mary xxx