Getting a MS diagnosis

New diagnosis and before diagnosis
1

Hi there,

im knew to this forum/website/whole thing in general. I’ll try start at the beginning. My mums sister was diagnosed with MS at a young age (19/20ish). This was 30 years ago so I’m surprised she got a diagnosis so quickly but with her MS she had a rare side effect to it which brought on seizures. This was only confirmed at her postmortem because she died due to taking a seizure in her sleep. At first she was treated for epilepsy because they didn’t know until after her death that it was linked to her MS, as I said this was 30 years ago so things may have been wrong or have changed from then.

my mum always told me my auntie had MS and about her death but doesn’t talk very often about it so I don’t like brining it up with her so I’m left with no one really to talk to about this…

i have been experiencing a lot of symptoms that appear to be symptoms of MS - extreme fatigue, dizzyness, loss of memory, stiffness in my legs/hands and loss of balance occasionally resulting in falling… so I finally stopped ignoring it and went to the GP today to discuss this. I explained my family situation and although I know MS is not directly inherited I also know that it poses more of a risk of having it, although it’s a slim percentage. I explained my symptoms and that I thought it could be MS. The GP examined my legs, arms, etc… Told me to stand in awkward positions, bend my arm back, lift my legs up. After the examination she told me she was referring me to physio because she believes it’s hyper mobility (I’d never heard of it) so when I got home I went on the nhs website and typed it in… Problem is I only have two of the symptoms for this which is joint stiffness and fatigue and after reading it I felt annoyed that i accepted her diagnosis so quickly.

I now feel I’m back to not really knowing what’s going on and how to proceed. I’m not one for going to the doctors often and now I’m feeling so let down I’m not sure whether to go back and persist that it’s something else. Hyper mobility doesn’t explain why I’m getting all these other side effects like falling and memory loss. HAS ANYONE ELSE BEEN TOLD ITS THIS BEFORE A MS DIAGNOSIS???

2

Hi,

My two young nephews both have joint hypermobility syndrome. It is causing fatigue, pain, and - in the case of one of them - falling over.

So I don’t think you should be too quick to assume your GP is wrong.

Obviously, I stand in the same relationship to them as your late aunt did to you, so when they first began to have symptoms, I worried about the old “family connection” thing, too.

It turns out their health issues are quite unrelated to mine, and both have benefited from physio - though naturally, being young boys, they’re not always that disciplined about doing it!

Personally, I would at least give the physio a chance, before assuming your doc is barking up the wrong tree.

I don’t think there is anything that makes MS and hypermobility tend to co-exist in the same families (there are some conditions where this is true, but I don’t think hypermobility is one of them). So if you do have it, I think it’s simple bad luck, rather than some subtle connection with your aunt.

My sister (the boys’ mum) obviously did tell their consultant about my MS, in case it had anything to do with it, but they think it’s complete coincidence.

Memory loss is not an obvious symptom of hypermobility syndrome, but could be an indirect consequence of fatigue.

One of my nephews is extremely forgetful, in the sense of losing things - often high value items like coats, phones, and football boots! My sister gets cross, as she cannot easily afford to replace all these things. We even wondered if it was bullying, and his stuff was getting pinched, but there seems no evidence of that - he’s just absent-minded with his property.

No medical connection has been made with his hypermobility (in fact, I doubt my sister would have raised it). But since you mention it, I wonder?

I know hypermobility can be associated with anxiety, which he also has. Not something you’d immediately link with what seems mainly a joint problem, but evidently it can have more subtle symptoms.

Tina

1 Like
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I’m definitely going to give the physio a chance, my doctor did say that the physio would assess me first and if they thought it could be anything more then I’d get sent back to the GP.

From what I’ve read on the nhs website it doesn’t say anything about falling over with hyper mobility so this is where I’m wondering how what ever it is I may have is linked to this. The GP didn’t really elaborate on what it entails. I’ve read it is generic but none of my family has this… However it wouldn’t be the first time I have a genetic condition that my family doesn’t have, a consultant has explained that I appear to have mutated them and have started the condition in my family.

im not saying my GP is completely wrong with the hyper mobility diagnosis it’s just that some things don’t add up to it, although I know it can be from a completely different problem that I may have. It doesn’t mean to say I do have MS, I only thought this because of the family situation and all my symptoms linked in to this.

i think I’ll give the physio a go and see how I get on from there, the GP did say if anymore symptoms arose then to go straight back so I’ll see how I get on.

thank you for your help.

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Hi please don’t push the diagnosis aside of hypermobility. I have ehlers danlos hypermobility type formerly known as type III , also known as benign joint hypermobility syndrome. A heritable connective tissue disorder, It is a very disabling condition for many of those that have it. I am a full time powered wheelchair user. I have helpers danlos, diagnosed 20 years ago at University College Hospital London. Where there is now a specialist hypermobility clinic. I would suggest anyone wanting a definitive diagnosis to ask for a referral there rather than a local rheumatologist.

I would say that I have read that studies have been done in the U.S. (a Google search) and that those with EDS ‘may’ have a 10% greater chance of having MS. Please don’t quote me on this, it was a while ago now, so own research essential.

Many symptoms of hypermobility mirror 's, hence me being here!

Wishing you both the very best.

I am often not well enough to post, I just had to say about the hypermobility. Ehlers danlos hypermobility type for me.

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