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When should I tell my family?

Hi, I’m not sure if I’m posting this in the right bit, but I need a bit of advice. I’m still waiting on an MRI, so I haven’t had any diagnoses yet, but I’ve some symptoms pointing in the direction of MS- Optic neuritis, bizarre dizzy spells and now tingling in my hands and feet. I’m a 30y/o woman, I just seem to fit the bill. I’m trying not to freak out about it but we’ll see how that goes. I talk to my mother about almost everything. I haven’t been diagnosed with anything and for the most part I actually feel ok so I don’t want to worry her unnecessarily. I really want to tell her but I really don’t at the same time. I don’t know what to do. Any advice greatly appreciated. Thank you.

send for the booklet from the ms society RRMS.

it explains it clearly with diagrams.

in my mind i now see my immune system as a mouse nibbling away at my myelin!

it was handy when explaining it to my family, my eldest had just completed his apprenticeship as an electrician and said that i was headed for a short circuit!

it’s good to be able to relate it to electricity, with the buzzing and electric shock symptoms.

tell your mum when you consider the time is right.

ps

maybe show her the booklet and explain how it relates to your symptoms, perhaps it will prepare her for your diagnosis.

Basically, until a neurologist has told you it’s MS, it’s something that would only worry your family. So if you can, put off telling people you’re being tested until you have something definitive to tell them. It might be a different story if you had symptoms that you needed to talk about. Or if the process of being tested goes on and on. But in the short term, if you can manage emotionally without their support, try not to tell people. And when you do, until you’re actually diagnosed, I’d avoid saying you think it might be MS. That tends to frighten those who love you. Better to say you’re having neurological tests to find out what’s wrong. Which is in any case what is actually happening. Sue

I’m undiagnosed but my mum had ms. I told my family and my husband’s family, (I don’t have kids or living parents ) about my main symptoms ( tremors, involuntary movements, twitching and tingling ). I felt like most people don’t know what to say and as I’ve had quite a few other health problems over the last 10 years I sometimes feel like people are thinking it’s all in my head. My GP keeps asking if anyone has seen the involuntary movements or the tremor but even when my husband is in the room he never notices. The tremor is invisible too. I couldn’t have made these things up and wouldn’t waste precious NHS time. I know something is wrong. I did see one neurologist because there was a possibility of Epilepsy but he suggested Neuropathy, a CT scan didn’t show anything. My GP has been very good but it’s the waiting for the appmts I hate. It’s a 38 week waiting list in Wales. One person in particular keeps on about why don’t I go to work. I had to give up my job sometime ago due to arthritis and have been happy at home and we are ok financially on one wage so I don’t feel the need to wreck my body further. I do one afternoon in a shop for voluntary work.

So whether to tell people depends on the support you are hoping for or whether you don’t want to stress people. It’s definitely a difficult situation. Hope you get an answer soon too.

Lesley

I have always been open with people. As others have said, the you may want to really think about weather to tell your mum about the possibility of ms, but the fact that you are having symptoms & tests is totally shareable. If your mum has been on the journey with you it may make it easier for her to acept a Dignoses when you get one.

I stuck to facts rather than my fears, beliefs re what was going on.

As much as anything, to me it’s about trying to keep relationships, real. If you are hiding this from your mum it is going to have an affect.

This is just my opinion, without having met you or your family.

You need to do what feels right for you & yours.

good luck with your difficult decision

hugs

Hey Anonymous,

It seems like we’re in the same boat, being about the same age, gender and having similar issues. I’m also waiting on my (second) MRI, after the first one I had last year was negative. That was a brain scan though, now they’re doing my spine too.

I’m not quite sure I agree with Sue, about having your parents/family worry for nothing. Your symptoms are real, so it’s not “nothing” to begin with. Plus: how well can you cope without telling people? For me, I’ve got a couple of coping mechanisms: work, sports, and talking with my friends/family.

When the doctors started suspecting and testing for MS about 1,5 years ago, I also didn’t tell so many people. Like: my spouse, my nearest friends and that was it. Why should they worry when it’s probably a pinched nerve, right? But as time progressed, another bout hit and my symptoms started getting worse. My neuro ran a bunch of tests which weren’t positive for MS, and since I had been in a lot of stress, a psychosomatic explanation fit the bill as long as it didn’t reoccur under less stressful circumstances.

Well it did happen again, and I’m seeing my need to vent with those around me increase exponentially. What kept me ‘cool’ last time my neuro’s argument that as least if it didn’t happen again, it probably wasn’t MS. With that argument now out the window, I did start involving my family and friends a lot more.

Ask yourself: what are my coping mechanisms? What do you do when things aren’t working out the way you wanted them to? Do you usually go and punch it in the gym, do you hang out with friends, or do you find solitude and relaxation in nature? How many of these mechanisms do you still have that work well, and which ones aren’t up to the task anymore?

The point I’m trying to make, is that a potential MS diagnosis is a very stressful event, whether you get a positive diagnosis in the end or not doesn’t matter. Right now, your symptoms and your feelings about them are real, and you’re the one who’s going to have to deal with them first. Even if you get a diagnosis of something, your doc probably isn’t going to help you with that (sadly, doctors can be remarkably un-empathic people from time to time).

So ask yourself: is NOT involving your family even a healthy choice for you? If you can manage without, then yes. But are your other coping mechanisms up to the task of dealing with the weight that’s been placed on your shoulders? In the end, I guess you’ll have to figure it out as you go along. For me, I found that venting started to take a much more important place this time around, with a third relapse in a year and my ‘own’ ways of dealing with the fears slowly having been exhausted.

Just my 2 cents :wink:

I wish you all the strength and love, we’ll get through this!

~ E

Whilst I understand you don’t want to unnecessarily worry your family, the support of family is an amazing thing to have when you are having worrisome symptoms.

Personally, I don’t know where I would be without the support of family and friends whilst in limbo.

I am having an MRI this week and have said to people who are close to me: ‘Neurologist has said possible inflammation of the CNS, could be caused by MS. He said 25% chance my MRI will be clear. I don’t want you to worry though as MS is not directly life threatening and I may not even have it.’ Everyone has taken it well and been very supportive.

I don’t think people should be left to deal with worrying symptoms alone, we need support. Of course, ultimately, it depends on who you tell, what your relationship is like with them etc. I am very close to my mum so she was the first person (apart from my partner) who I spoke to about it all, I shared my symptoms, my worries and my hope.

Goodluck.

x

Thanks everyone for your advice, I actually feel alot better even just having read all your replies. I think I’ll maybe keep it to myself for now. Thanks again x

Dear Anonymous,

I began to suspect MS and when my doctor sent me for an MRI (they found lesions), he suspected MS too. I went to a private neurologist who read the scan and also suspected MS. As a result, I told everyone important to me, including my work place that I had suspected MS and lots of ongoing symptoms. (I could not hide my symptoms). It has though taken eight months for the diagnosis to be confirmed by the NHS.

There is no right or wrong.

I too, was very worried about telling my mum (amongst other conditions, she has early onset dementia, type one diabetes and arthritis). Amazingly she has been wonderfully useful/supportive. Always happy to listen. Compare her symptoms to mine etc. Because of your post, I asked her today whether she would have preferred me not to have worried her and she explained that a mother worries about her children all of the time (I am 48!) She is absolutely convinced that it is better that she knows.

because of my condition, I am convinced that I am also more patient towards her and her ongoing symptoms. So there have been real benefits to our relationship.

Be cautious though and be prepared for all types of responses. Most people are loving and comforting (some cried and some offered real help), some responses though, have been weirdly condescending/impatient/ugly , especially at work.

i am certain that you will find a time that is right. Warmest wishes Ali

When I was in your shoes, I didn’t want to worry my (now late) mother with thoughts of ?MS either. But she knew something was amiss, as mothers do. Many years later later, she told me that she had been privately convinced back then that I was dying of a brain tumour: MS had not even crossed her mind! In other words, if either of us had not been so anxious to avoid distressing the other that we didn’t dare share our fears, it would have helped us both and we could have supported each other better.

Only you can judge what is best in your situation. For what it’s worth, that was my personal experience.

Alison