Forum

I need a bit of advice.

I’m not entirely sure where to start with this. It’s one AM and I can’t sleep again so I’m googling MS symptoms. I’m 21 and a psychology student from Birmingham. I live with my mom, dad and twin brother. I have a precious dog and two cats. I’m also a carer for my dad. He’s been diagnosed with MS for the past 30 years. It’s pretty bad, benign MS I believe. He’s wheelchair bound, angry, sad, forgetful and a hopeless case. He doesn’t remember things and I believe he’s starting to develop early onset dementia. We had an amazing relationship when I was younger however as I grew older he grew more angry with life and took it out on us kids. We don’t really get all much anymore. I honestly believe that I have MS, or am at least starting to develop it. My dad, aunt and grandad had it. I know its not hereditary but it’s a little odd that three people in my dads family have it, right? I’ve been to doctors and they just tell me that I’m getting too obsessed with MS and need to not let it ruin my life. That I’m crazy. But, I know how I feel. I know my body and my mind and I believe what I believe. I have the tiredness, the weak bladder, the bad memory, the bad eyesight, the bad balance and posture. I get pins and needles regularly in my legs, my knees give way on me most of the time. I have bad joint problems, being diagnosed with Tietze Syndrome a year ago. I had depression a few years ago and panic attacks regularly. I’ve tried talking to my mother about this but she always brushes it off. Apparently I’m too young to develop it. Doctors won’t help, friends don’t understand and it’d kill my dad if I told him. I just need some help, some guidance, anything.

Hi Bellewalker, It MIGHT be just anxiety, as others have suggested - you have no symptoms so far that overridingly suggest MS, and couldn’t be due to other causes. However, whilst MS is not hereditary, there is definitely a genetic component, which is why we see it cluster in some families - like yours. I think your doctor is wrong to be quite so dismissive, given your family history. And even if, for the sake of argument, this WAS stress, as has been suggested, then shouldn’t you be getting some help with that, to see if symptoms ease, rather than just leaving it? There’s no such thing as “too young” to develop MS. On the contrary, peak onset is in young adults, but it can strike at any time. A curious phenomenon is that in families with several members affected, onset has been shown to occur at roughly the same age. So it would be worth trying to find out when your dad, aunt and granddad first began to experience symptoms. Please note there has not been shown to be any correlation with other aspects of relatives’ disease - only age of onset. So your dad being very severely affected would not imply yours would follow the same course - if indeed you did have MS at all. I think you need to speak to the doctor again, or maybe try a different doc. If you don’t want the formality of switching doctors, could you accidentally-on-purpose schedule your next appt. for his or her day off, so you get to see someone else at the practice? Even IF it’s anxiety, you need some help with it - not just to be left for it to go away by itself - which is unlikely, unless you have some kind of treatment to address it. Unfortunately, once you’ve had anxiety, depression, or anything like that, it does seem to reduce the chances of being taken seriously if anything else crops up. But anxiety and depression can themselves have major physical symptoms, so even if this was the root of your problem, it wouldn’t mean what you’re experiencing is not real. I’d definitely give it another go at the doctor’s - ideally with a different doctor. You might get a totally different approach from someone different. Tina x

Hi Bellewalker

Welcome to the forum. It sounds like you are having a difficult time of it.

What I would say is that of course a lot of the symptoms do fit MS but there is also a good chance your symptoms could also be caused by something else and could even be treatable. I think the problem is you’ve been saying you’re worried about MS and that’s made Dr’s and I guess your family and friends feel like you’re a hypochondraic.

I would start afresh make a conicse list of the symptoms you’ve had and when they started - concentrating on the main things (if you put everything in minute detail the GP will switch off). So eg for me

July 2011: L neck spasm treated with diazepam and recovered

August 2011: Recurrence of L neck spasm with pins and needles in L thumb and index finger (referred for physio)

Oct 2011: Episode of sudden onset pins and needles in lips progressed to chin and tongue and leg with numbness. Later developed bladder weakness and bowel issues. Recovery of symptoms by Oct 2012.

April 2012: Crushing sensation round ribs on L like a corset type feeling, some worsening of L pins and needles in foot.Crushing symptoms recovered 1 week later.

etc

Then take it to the GP - preferrably one that will listen (if you find you can’t get them to listen you can always go to another GP practice) If there is someone supportive you can take then take them along it’s always good idea. Please do not mention anything to do with MS but instead state your symptoms that you’ve written in your list and summarise with the things you’re struggling with and ask the GP what do they think could be causing this.

The first step would be blood tests to rule out anything obvious such as thyroid/vit D &B etc With your history of depression/ anxiety the GP may even decide some meds for that (I don’t know if you’re on any). If this is the case I wouldn’t say don’t say no but go away and try the meds - if after a few months they haven’t work then go back to the GP and say you put me on these meds because of X y and Z but they haven’t helped in fact I’m still getting symptoms… I don’t think is related to my anxiety or depression is there something else that could be causing this? The next step would be a neuro referral there after possibly.

Most importantly and I know this is easy to say - stop worrying. You are a 21 year old girl with your whole life ahead of you. You could be worrying when this isn’t MS and you can be treated and that would be a shame. If it does end up being MS there is nothing to say you will end up like your dad - unfortunately I guess his outlook has probably made your fear much worse. A lot of MSers now do go on to have happy fulfilling lives and hold down jobs and accomplish other great things. MS is not the end of the world. Please start enjoying life, it’s precious. Go and get advise on your symptoms but leave the diagnosing to the professionals GP’s hate self diagnosis.

Hope that helps a little. This forum is always here to bounce ideas and ask advice for your symptoms - you’ll find there’s a greta bunch of people. Good luck on your journey I hope you manage to get some help and take a step closer towards getting some answers.

Reemz

X