Got diagnosed with EDS but my current neurologist doesn't believe it- anyone else with an abnormal EEG and cognitive impairment?

Hello forum world for people with too many issues to fit on an A4 paper!

I'm new here.. but not sure if I'll be staying :/

So I've been struggling with cognitive impairment for 2 years now. It started out with loss of notion of time and memory loss with a weird neck/head pain that they called tension. I was diagnosed with migraines at first but it didn't quite fit.

After about 9 months I thought I was going to lose my mind so I decided to go to a neurologist. The neurologist did an EEG which came out abnormal. She said either you have a mass or you have epilepsy. We did an MRI and a PET scan. The MRI was clear, and the PET scan not but they never seem quite worried about the PET scan. So no mass... on to epilepsy.

Thing is I've never had a seizure. Yes, I've had weird moments that I can't really explain where I just don't really understand whats going on and I can't understand anything. I get this horrible weird sensation that goes through my forehead. However, I tell this to the neuros and they don't go "THATS DEF EPILEPSY!" .. they go.. mmm maybe?

I've just never quite been a clear fit. However, I have memory loss, I lose my words, I sometimes have trouble reading/concentrating, I lose notion of time, and I am sometimes unable to comprehend the simplest of logic.. as in "so my grandmas sister..." and I'm like "sister what?"

So about 8/9 months of epilepsy treatment that wasn't successful .. a lot more tests came along .. 5 day eeg, spinal tap, more MRI's, more PET scans, two neuropsychology tests, tonnnns of blood tests etc..

The second diagnosis with no proof as my spinal tap (horrible horrible thing with awful side effects) was clear was autoimmune encephalitis.. so safe to say that treatment for that didn't work either.

After that the neurologist literally said.. "well you finished university so it must not be that bad" .. even though I felt bad, the neuropsychology test were bad and my EEG's are awful.. but okay.

So I took matters in my own hands and looked up different things...I came across Fibro which made me think I should see a rheumatologist as the neuro symptoms were just the worst ones... I have stomach issues (reflux since 2010), lots of palpitations since 2010, problems breathing (since young teens), my bladder is wrecked (since 2014-15) (I need to pee all the time its awful and the bladder itself is so painful when its full), I'm constantly in pain .. back neck hips shoulders legs( since 2014-15) .. you name it.. and trust me it probably hurts.

So rheumatologist saw me and noticed my super flexible fingers, hands, legs, arms. Noticed my scoliosis and my wrinkly hands (I'm only 25 but since I was a teen my hands look about 80)

Anyways theres a ton more little symptoms such as bleeding gums and etc.. but this is already very long ( I apologize!!!)

So I ended up seeing a specialist in Paris because I was in Brussels at the time and they have no specialist there and as far as I know none in Edinburgh either (where I study). He was super sure I had Ehlers. So I began emailing all my past doctors to let them know. The neurologists that told me to just move on basically.. they said "okay good day" but the one neurologist that has seen me since the beginning basically said that the school of thought when it came to Ehlers Danlos was very new and not entirely scientifically proven, and thus, doesn't believe everything the professor says about ehlers. So he wants me to do genetic tests.. which is fine. I figure I'll just see both because I get his point that its a bit dangerous to go and settle for one diagnosis in case I were to get worse, and its not that. The specialist agreed that it couldn't hurt to see a neurologist as well but he said that it has been reported (eventhough rare) that just like people with Ehlers sometimes get "fake" asthma .. that they can also get "fake" epilepsy which shows abnormalities in the EEG... would literally love to meet these apparent cases.

So I guess my question today.. (in short after this essay I've just written haha) is there ANYBODY ELSE OUT THERE with an abnormal EEG and these insane neuro symptoms?

I've just literally not met anyone remotely like me, with symptoms similar to mine.

After two years that gets quite lonely because no one can understand and no one can relate.

Anyways, hope you are out there other weirdo case no one can understand :P I would love buddy haha

Hope you guys have a good evening!

xx

Victoria

Last edited by

6 Replies

oldestnewest
  • Hi Victoria.I've read a lot of your post whilst nodding my head in recognition. I can understand what its like to feel that no one else is experiencing the same or similar symptoms.That there is no doctor or specialist who can put a diagnosis on all the strange symptoms..

    In the ten years that I've been ill,suffering with all manner of symptoms that have affected my entire body system, I have seen almost every specialist. I have some symptoms diagnosed and those that dont fit are left hanging in the air to 'see what happens' as 'when kidney function test abnormal,then treatment starts' 'when thyroid at the level the guide line suggests,then treatment starts' etc.

    I am learning from experience that each specialist only deals in their body part, and that most tend not to join- the-dots of all the symptoms.This can be good if you need separate treatment,but bad if those symptoms relate to an undiagnosed condition.

    It's not easy when you have lots of symptoms, and a lot can overlap with several or more conditions.That I guess is why the doctors/specialists are hesitant to make a diagnosis, and as much as we want a diagnosis, we want the right one!..It can feel demoralising though,the just 'not knowing' what's wrong. Because what is it that there could be treatment for?..But also a diagnosis can then put every symptom down to that condition,and other illness can go undiagnosed(A lot of my symptoms are put down to fibromyalgia,and I have to go through a lot to get a diagnosis of something else) hence my present struggle.

    Hang on in there.You know your own body.Keep going and don't give up on finding your answers.Best wishes.x

  • Thank you for your message! In a way its nice to know I'm not alone with these kind of diagnosis issues. My first few symptoms may have started 6 years ago but nothing was called or really felt like an actual illness until 2 years ago. I honestly don't know how I could go 10 years with so many unanswered questions :/ I think its the one thing I've learnt from reading these forums.. These silly syndromes/conditions/diseases etc.. make for some really strong people.

    Thanks again for answering! Best wishes.xx

  • Totally understand, I have EDS 3 too and get lots of weird symptoms. Will be seeing the Neurologist on Thursday myself and hope he has got something useful to say. Wishing you all the best with your journey.

    Ps have you done a tilttable test to see if you got POTS? (Might explain your EEGs)

  • I'm getting a ton of cardio tests done by the EDS specialist as he explained the vascular part of EDS is the very dangerous one. I did tell him a doctor had recommended a tilt test a while back because I showed signs of POTS. Can POTS really cause abnormal EEGs? Because I mean I've read plenty about EDS and brain fog, and even POTS and brain fog. Wouldn't it be nice if my brain was fine after all :P I'm going to push for the tilt test, if its not already scheduled ... he's being very thorough, thankfully!

    Thanks for the reply!

  • If you have the vascular EDS it's really important to get checked out well. POTS can explain some abnormalities on the EEG but it all depends what kind of abnormalities you have on your EEG, I'm not a doctor and can't see your EEG from here. I know it's frustrating to go through all those test in the hospital but please keep going until you know what's going on.....

    Hope you get the answers you need

    Take care

    😘

  • Hey so I have all of the same same neurological symptoms as you I haven't however managed to convince my doctor to refer me to a neurologist as I already have a diagnosis of eds type 3 fibromyalgia and emotionally unstable personality disorder. Have you looked into whether it could be a combination? As in my doctors believe it could be the fibro fog mixing with detachment in my eupd which often causes memory loss/black outs (which causes me to lose lumps of time) I sometimes wake up foggy and can't quite make sense of anything which I know for fact is exasperated greatly after alcohol or weed (only smoked it 3 times because it just makes me completely loo loo) also this may sound stupid but what can have an affect along with your sleeping pattern, routine and I've started writing a lot and reading it the next day (sometimes I go blank and forget to write) but sometimes it helps especially if you remember more than you thought you did. Also started making a vocabulary book any word I've forgotten I've written a definition found the word and written it down and I haven't forgotten that word since although I still lose other words but at least I have a system not to repeatedly forget the same ones