Worried about daughter's symptoms

New diagnosis and before diagnosis
1

Hi everyone…i’m new to all this so il try and give you some detail about my situation.

I have had symptoms of MS for about 18yrs and was diagnosed with fibro at the time and even though i began to have many more symptoms over the years i didn’t pursue it through the drs because i was treated as a hypochondriac suffering from depression…[i wasn’t depressed, just felt very low because of the symptoms]. I saw a new dr recently and mentioned, numbness, pain, clumsiness, difficulty walking, poor memory etc so he made me an urgent appointment with neurologist.

I returned today from my visit to the Neuro and she thinks it is MS and is sending me for mri… I’m not too surprised with this as i haven’t got the energy to feel frustrated or angry anymore. In the early days i felt desperate at times, that i knew there was something wrong but the drs didn’t take it seriously. In my thirties i decided to just take do whatever i could to help myself feel better…vits, alternate therapy etc.

My youngest daughter, who’s 12yrs, knows very little about my symptoms as i havent wanted to worry her. Any symptoms i’ve had that she’s been aware of, i’ve put down to getting older, [i’m 46, so i’m ancient to her!]. As i’ve toddled off to the toilet for the 5th time before we go out she has renamed me ‘incontinent mamabear’.

My worry is not myself but her. She has had problems with her legs for 2 years now which the dr put down to ‘growing pains’…constant cramp in both lower legs, difficulty sleeping and a very sore scalp where she can’t bear to brush her hair…[This is the dr that said i was just depressed and my symptoms were all in my mind]. She has every symptom i had in my 20’s when i first started with this

Over the last few months she has been getting numbness in legs, pins and needles, pain in back, feeling exhausted, etc. Took her to see a different dr who has referred her to the hospital as he thinks it is related to my condition. [she’s had a lot of blood tests to rule things out]

I feel so upset about this as i can see what she’s going through… i reassure her and try to show i’m not worried but there are days i feel i just can’t cope. It’s easier to think i have ms but horrendous if i think my daughter could have it too.

She’s back to the hospital tomorrow for more tests so i hope more than anything she has a vitamin or mineral deficiency that’s causing these symptoms…

Apologies for the long post…its been a pretty awful day all round

2

(((Hugs))) to you, what a horrible thing to be going through, you are carrying a huge burden at the moment.

I have so little knowledge about MS I am totally unqualified to give any advice, I just can empathise as I know how I would feel if I saw my daughter go through what I am going through just now.

I think I am doing the same as you, I just talk about my gammy leg and no one questions it.

Take care of yourself and we will all be with you in spirit tomorrow.

3

Thanks…i have no family where i live and i don’t want to talk too much to my friends about it as they don’t really understand…[not their fault]…

Can i talk to my employer about my diagnosis, as i haven’t had the mri yet. I work permanent nights [6 on 8 off] and my symptoms have got rapidly worse since i increased my night shifts. i think it would be better if i could split my 6 up.

I need to feel as well as i can so that i can be there for my daughter…she gets very angry and irritable because of her symptoms and if i’m feeling rubbish i find i’m snapping back which i then feel awful about.

4

I have told my supervisor and given her permission to tell my boss, (I would cry if I had to).

I have done this so she understands if I have to call in sick she will know why, also for GP an hospital appointments, my main hospital is 70 miles away ( and crap roads) so it will mean days off to go for appointments.

I have not told my family apart from my OH yet, I have it all planned how to tell them but I need a dx first.

Take care.

Rhony

5

Hi Rhony,

The neuro told me today that shes pretty certain i have MS but i haven’t had an mri yet??. Is it possible it’s something completely different especially with my daughter having lots of symptoms. I took what she said as a dx but it could be wrong if the mri is clear.

I’m confused now, which dosen’t take much these days! :slight_smile:

I’m in no rush now for a dx for myself [as i’ve had these symptoms for so long] but i feel like battering the neuro’s door down to find out whats wrong with my daughter…A mother’s protectiveness runs pretty deep methinks!

6

Not that it’s probably much of a help, but I do know how you feel: I went through this with my own daughter a few years ago. After months and months of mucking about (her not wanting to tell me about her symptoms followed by much discussion about whether or not she wanted to know what was wrong and then me getting her an MRI scan at Uni - a few small lesions, which made me insist on her seeing someone), it turned out that she was B12 deficient. All that flippin’ time that she could have been on supplements :frowning:

So, I think you are absolutely doing the right thing by getting it properly investigated. I really hope that it turns out to have a similar ending to my story.

The very best of luck to you both.

Karen x

7

Hi Karen,

Thanks for your msg, it’s reassuring to know that i could be worrying over something that could be sorted quite easily. I don’t tend to talk to people easily about any stresses or problems i have as i feel people have enough of their own problems to deal with. [That’s probably why friends and co workers think i don’t have a care in the world] :slight_smile:

I’ve been at the hospital most of the afternoon and i feel quite confident in the Dr who is helping my daughter…He was very thorough and took lots of bloods and neuro tests. Because of my health issues he’s checking into allsorts of neurological illnesses and is doing a gene test…don’t know what its for tho!..My eldest daughter felt unwell when she was 19yrs and woke up to find she couldn’t move her arms or legs. At the time they said it was viral meningitis so that could be the gene thing. .

Today the dr also asked my daughter to take her trousers off so he could test her legs which was mortifying for her [as she’s only 12]… Oh, to get that easily embarrassed again!! At least the radio didn’t start to play Tom Jones’s ‘Sex Bomb’ while stripping for a med test like it did for me!

I shall be positive and hope my daughters situation will be like your daughters…

Wishing you well x

8

Sex bomb, no trousers and a medical examination! Argh!!!

Both daughters and yourself does sound suspiciously genetic, but you never know. Please let us know how it goes - I’ll be thinking of you.

Kx

9

Thanks Karen and Rhony for your replies…People on this site are so supportive of others and it is appreciated by myself and i’m sure, many others,

:slight_smile: :slight_smile: :slight_smile:

10

Hi Mamabear -

I know what it feels like to be a mamabear, as my daughter was diagnosed in the summer with MS, after 4 years of symptoms. It is indescribably awful to see your child unhappy and potentially ill, and being completely helpless, so I do know a bit of what you’re going through. I’m so sorry! This is so tough on you - with your own illness to contend with as well. I just wanted to send you big strong cyber hugs - and big strong wishes that your daughter turns out to be as lucky as Karen’s! And if she’s not, then she’s got a big strong mamabear to help her deal with this!

Good luck!

V