Forum

Update - hi again!

This was the first forum I turned to when I started having a collection of odd symptoms in 2012. It has been a crazy journey so far and along the way I have picked up diagnoses of Functional Neurological Disorder, Chronic Fatigue Syndrome (a symptom really rather than a separate condition) and just yesterday, a diagnosis of Joint Hypermobility Syndrome which may be Ehlers-Danlos Syndrome.

I’m currently awaiting a third neurology appointment (because an fMRI done whilst taking part in a research project showed some structural changes) and awaiting a rheumatology appointment for the hypermobility syndrome.

Why am I still posting here then? Because I do not feel that after one MRI, MS has been completely ruled out. In EDS, there is a tendency to be prone to MS. I need to be certain. Also, I hope that my experience might be helpful to someone. I’ve had to be persistent and informed and my GP thinks that we might finally be getting somewhere.

I’m so grateful to all on here that encouraged me to stay strong and look for answers, to become educated about my symptoms and the conditions that have been brought to light. I have learned how important self-advocacy is but to balance that with good relations with the medical professionals who really are doing their best to help, some more successfully than others. Wishing you clarity :heart:

Hi hun. I recall your name being a regular poster, like myself.

I read up on EDS when it was in the news, as the character Izzy, on Corrie, has it. People have said to me, why is she in a wheelchair, when they have seen her get out of it, with relative ease.

I totally get why that is…she could easily fall and break or dislocate a bone…painful!

You may recall having seen posts from me about my long term misdiagnosis of PPMS. I still only have a half diagnosis of;

spastic paraparesis, cause unknown/could be hereditary.

But I was encouraged to remain a member of these boards, due to my interest in MS. I try to offfer support to newbies and oldies alike! Much like yourself.

Whether we have MS or not, we can still be active members of a forum, which seeks to help and befriend others.

Good luck and wishing you all the best, Pollyxx

Bless you, Polly, thanks for your reply. I don’t follow Corrie but did see an EDS UK video on YouTube of an interview with her. I’ve been finding interesting facts about maternal family members which tie in with EDS symptoms. What a journey, bless our bodies!

Hi Reiki

I’m so sorry you are still searching for answers. I, like you, found this forum a while ago whilst experiencing a strange collection of symptoms.

I, too, have stayed a member of this forum, and was so grateful for the advice and support in the early days of trying to find out what was going on with my crazy body!!

I’m sorry you have now picked up yet another diagnosis, but at least if they know you have this they can help you.

I am still seeking definitive answers, which is another reason I have remained a member of this forum, as there is still a tiny part of me that thinks I still may have MS or something similar.

I have, so far, been told I have fibromyalgia; 29% loss of vestibular function in one ear; lack of/wrong messages from feet/legs to brain; vestibular system elements not working together; visual vertigo; some form of neuropathy, still not diagnosed; migraine associated vertigo; trigeminal neuralgia; oesophageal spasms; possible superior semicircular canal dehiscence.

My GP thinks I should be happy with this and should “stop searching for the Holy Grail” and “make friends” with my health issues and accept I am ill and will always be ill!

Sorry, but I can’t do that! For me, there are still so many unexplained things and things that don’t make sense. I will keep fighting my own corner.

Good luck, Reiki xx

Hi Purpledot, good to hear from you! My latest diagnosis (JHS/EDS) actually explains almost everything. In fact, I’ve read that it is underdiagnosed. I suggest looking up the Beighton Scale and the Brighton criteria because EDS is a multisystemic disorder. The symptoms you mention which overlap with EDS are…well…possibly all. I don’t know the last one. {Big Purple Hugs!}

Glad to see you’re still here reiki!!

I too sill think my current temporary diagnosis of vestibular migraine is inaccurate and my latest symptom definitely doesn’t fit with the migraines. Currently waiting for my next neuro appointment which is overdue but the neuro is two months late with appointments.

Keep strong, keep smiling and keep educating yourself so the docs can’t just fob you off with silly long words and terms :slight_smile:

mick :slight_smile:

Thanks Mick. I’ve joined EDS UK and got a huge bunch of information. I’m so fascinated by the overlap between various different diagnoses. I’m looking forward to seeing the neurologist as I need to know if I do have FND or not, if MS has been absolutely ruled out and if there is anything else related to EDS (Chiari 1 is commonly associated with it, as is PoTS. The quest for clarity!

I have also been diagnosed with JHS/EDS in the last few months. I have POTS, Syringomyelia and it looks like I may have some Mast cell issues too. It does not explain quite all my symptoms and a lesion which comes and goes so my neurologist is keeping to reviewing me 6 monthly but I am at least on treatment for POTS so hoping I may get some improvement. Unfortunately it looks as though my 3 children have inherited it and my daughter shows some signs of POTS which breaks my heart as she is only 6. My dad is also looking likely to be diagnosed soon after suffering symptoms on and off for years and nobody putting it all together. Thankfully I have found a GP who seems to get it all which I think is quite rare. I hope you get the help and support you need it does seem that you have to do most of the work yourself with these conditions due to the lack of awareness. I find it amazing now that it took so long to connect the dots as it seems so obvious now I know lol.

Hi Reiki

May I ask a question. You say there is a link between EDS & MS Where can I find some more informations please ?

The reason I ask is out of a little panic. My maternal grandmother died as a result of ms in 1961. I was diagnosed with rrms a couple of weeks ago. Now I have found that my 27 year old niece likely has EDS - waiting on tests.

Obviously with 2 other close relatives in the ms club she may be at greater risk. Id like to find more jnfo

Hi JanetV and sorry for the late reply. I honestly cannot remember where I saw it as I’ve done so much reading on EDS. Though there is a slightly higher risk it isn’t a certainty. Google Ehlers-Danlos and MS by all means but read with discretion.

I received my official diagnosis of EDS Hypermobility type today and a few weeks ago, an unexpected one of Generalised Anxiety Disorder from a Neuropsychiatrist, who assured me that my last fMRI held no red flags. So, I feel that it is finally time to step away from this forum. I wish you all the very best: clarity and compassionate care. Much love and thankyou for all your support :heart:

1 Like

Reiki you keep me going on i have read your posts and pollys to they have helped me or shall i say helping me on my personal journey of is it ms or not im just at the start really but thanks to you and a lot more lovely people on this forum im finding the strengh.Bless you all xx

Bless you too Sparky. Wishing you clarity and right treatment.

Thank you, I will google with caution :slight_smile:

Good luck with everything xx