Autism FND and EDS and adhd

[Tracey0101]

I am on also the spectrum of ASD and I have EDS hypermobility and adhd and I have symptoms for FND for 4yrs now and I am waiting to see a Neurologist. I also have mental health illnesses.

[210272]

That's a lot to have to deal with Tracey0101 and I hope the neurologist will be able to arrange the multidisciplinary support needed for people with complex and over lapping conditions.

Also that's a long time to wait and delayed diagnosis is nearly always bad for people so I hope they respect that and get on with sorting out an agreed treatment plan with you toot sweet. Please remember that they can't give the FND dx on the basis of other conditions you have (correlation is not causation) - they need to list the 'rule in' signs and tell you the diagnosis during the consultation. Given that this doesn't always happen and that some drs seem to find it very hard to write their notes in accordance with GMC guidelines, it's probably a good idea to record your consultation with the neuro.

[Tracey0101 in reply to 210272]

Yes it is and thanks for the advice and I need it you are really understanding and a lot of you are of you are very supportive and understanding thanks so much sending love and prayers to you all

[Lady4]

Agree with 210272, its a multi- disciplinary approach (OT, PT, poss joint specialist), neurology, psychology etc) you need. Sadly anxiety and depression are quite common too esp when you feel out of control of your own body but rehabilitation and time are key.

If you look after yourself you will be looking after your nervous system too.

Hope your neurologist can get a good team around you.

[Shimmyaway in reply to Lady4]

So do you think/know that neurologists in the uk are now working to treat patients with FND with an appropriate team approach ? even if they are still passing the buck to other areas e.g neuro psychiatry for the team approach that would be fine ... but not in our area as yet.

[Lady4 in reply to Shimmyaway]

Not heard of anything yet x

[Shimmyaway in reply to Lady4]

We can but hope .. in time for when your son gets transferred to adult services. We have a local service for children with sensory processing difficulties ... not so sure whether whether the OT's would have FND expertise.

[Lady4 in reply to Shimmyaway]

Our OTs will see children who have had ASD from birth re sensory but as my son isn't diagnosed difficult, she did give some details and I think I just burn't out as we kinda hit a brick wall so still need to pursue.

[Shimmyaway in reply to Lady4]

It doesn't seem right that you only get the 'sensory service' if you have ASD and are a child.

[Lady4 in reply to Shimmyaway]

Their cases are overloaded with motor let alone others, sad eh. Not even sure if there is a sensory service, just part and parcel, ie sensory profiling which was what I was seeking but I have the questionnaire myself to print, so I will do it and discover what input may need to be increased and which reduced, it all depends on diff environments/situations too but will see when he starts 6th form what may help.

[Lady4 in reply to Lady4]

Looking back on email it was the adult neuro integrated rehabilitation team details sent. I need to make a call and make him known to them from recollection.

[Tracey0101]

I have other conditions on top as well ptsd psychosis depression and anxiety disorder and bipolar symptoms and reynards pheromone fybromyagia osteoarthritis Cerebral palsy since very small autism and adhd and learning disabilities and I have symptoms of maybe others conditions but I am waiting for see a Neurologist. I am in a bipolar symptoms at the moment and all sensory imput is very impulsive and going all mad and crazy all at the same time. S

[Lady4 in reply to Tracey0101]

Thats a lot to deal. Some symptoms mimic other disorders so it is possible some of those could crossover/poss misdiagnosed. FND is diagnosed by "rule in" tests. I am surprised neurology is only just getting involved, hopefully they can make a plan of action for treatment/help.

[Tracey0101 in reply to Lady4]

Yes and I needed the Neurologist a few years ago but they never thought that there was anything else wrong they kept telling me it was my fybromyagia causing it but I knew it was totally worse than that as I had fybromyagia for years but one day in 2020 I couldn't move to walk at all just suddenly the day before I was just about walking on a walking stick but day after my legs wouldn't move and sometimes now getting up off the chair or bed I can't move it gets kind of lock muscles it can be either a knee, or a finger or my elbow I can't move or use and my arms decide to not move at all and my seizures started also in 2020 as well and temperatures on my skin were torturing me but just a gentle touch on my skin to touch even when I was needing dressings from the nurses on my skin and they couldn't do it the usual way for me anymore they at to warm the cloth and the solution up because they couldn't use it cold as it would be torturing me and I would be screaming loud as it wasn't just cold and freezing cold but extortionate painful for me and I couldn't bear the pain of it anymore. I couldn't even put my bear foot on the floor it would burn my foot so badly and can't eat cold food or cold drinks . I can't bear tiny touch but a teddybear hugs I can bear and ghey are lovely and I can't bear certain tastes or smells unbearable and uncomfortable painful and I get burning sensations and stinging and twitches and pinching and crackling sensations and electric shocks like I am being electrocuted and I can bear eating porridge and banana though I am movements and balance are really difficult I also feel extremely cold or too hot in body temperature as well . I know that my brain is not working as it used to work and I know its not working as it use to think or do certain things and its does tell me signals that my pain levels are very high degrees which it its never been this bad as they only spotted it more recently

[Lady4 in reply to Tracey0101]

I think sensory input may help.

You have had a lot to deal with and really need to strip it back and look at your most dehabilitating condition and address that first and once you have that under control, work onto the next but it takes time. Hopefully the Neurologist will have some suggestions/referrals.

Have they prescribed any meds on your journey?

[Tracey0101 in reply to Lady4]

Only for my depression and psychosis and pain relief and nothing for this though yet. I am still waiting to see a Neurologist and psychologist since last year.

[Lady4 in reply to Tracey0101]

I see, are the SSRI (depression) and I am guessing an atypical antipsychotic drug for bipolar, monitored regularly.

[Tracey0101 in reply to Lady4]

Yes I have now been referred to the psychiatrist today to assess my mental health and maybe medication basically I think that I need medication for the bipolar symptoms and I need the bipolar symptoms diagnosed first as they wasn't believing me last November but so.e other of my mental health network said that I have symptoms of bipolar and I need it diagnosed and medicated as well. I have these same symptoms since a young child I do have psychosis but it's really more like schizophrenia because some of my family members have schizophrenia and I when I say my symptoms to them they say that's more like schizophrenia than psychosis but I am on qualtiapin 200mg and 2x 25mg which is 250mg and when I am like this this medication doesn't work in the slightest when I'm ill mentally in this

[Tracey0101 in reply to Tracey0101]

My blood tests results came back positive for Sjogrens as well so they have referred me to the specialist as well now. It's not nice to have

[Lady4 in reply to Tracey0101]

You mention a mental health network and you may have to see a psychiatrist, have you not been previously referred to one before as I would have thought they would have been the ones prescribing drugs like Quetiapine (was that what you meant) not GPs.

Hopefully the psychiatrist can review meds and your whole history and prescribe something that helps.

I think most conditions need "rule in signs/tests" not just because you have symptoms as many conditions share similar symptoms although management of the symptoms would probably be different.

Try not to overthink it.

[Tracey0101 in reply to Lady4]

I have but they discharge me when I feel better but the is every 5-6 mths it returns back again but much worse than the times before and yes I got prescribed qualitiapin from the psychiatrist back in 2021 and then a increased in it in 2022 and then it doesn't work when I get mentally ill again like Las April and November and again now.

[Lady4 in reply to Tracey0101]

I see, maybe they will do a thorough review but try not too get too anxious.

[Tracey0101 in reply to Lady4]

Yes this is well needed for me

[Tracey0101 in reply to Tracey0101]

So that's why they have referred me again to see a specialist the psychiatrist which I haven't seen since 2022.

[Tracey0101 in reply to Tracey0101]

They don't review my medication since 2022 either

[Tracey0101 in reply to Tracey0101]

My gp and my carer who is a qualified in psychology her first day with me she spotted the bipolar symptoms and some of my other professionals spotted my bipolar symptoms last year. I have these symptoms as a young child.

[Tracey0101 in reply to Tracey0101]

The mental health intensive team didn't believe that it was symptoms of bipolar and that's just by them talking and not assessing any further as it has to be assessed by a specialist psychiatrist to assess and diagnosed bipolar.

[Tracey0101 in reply to Lady4]

I'm on qualtiapin since 2021 and it's been increased in 2022 but it hasn't been reviewed since 2022. But I go so far in life on my daily life journey what I need to do and go and battle life with good times and bad times then the yo yo starts about every 5-6mths and I'm worse than I was times before on the yo yo and ferrari and underneath the ferrari because I crashed it was going out of control and I couldn't keep on battling life difficulties with ups and downs so mental illness started again and I couldn't fo my groups and keep going and doing my best and hardest but I crashed badly this time and thr yo yo is crazy in my mind very fast and its going like a real yo yo and sensitivities going crazy and madness as well and sensory imput doesn't help me at all when it's like this high degree. I can't handle the sensory imput.

[Lady4 in reply to Tracey0101]

But there are things/techniques you can do to reduce sensory input too.

[Tracey0101 in reply to Lady4]

My sensory is very horrendous to a very high degrees so how and who can help and what techniques to reduce it

[Lady4 in reply to Tracey0101]

Have you ever tried a weighted blanket, they do a cool one too.

[Tracey0101 in reply to Lady4]

Yes I have got a weighted blanket

[Tracey0101 in reply to Lady4]

Neurology is only just getting involved with me because in 2020 they should of got involved with me but my Doctors kept saying its just your fybromyagia and nothing else and I was in hospital with stroke symptoms but I have not had a stroke. I had non epileptic seizure and eye seizures and they were still saying its my fybromyagia causing this all not being aware that I am in a new trauma started in 2020 and it is a massive new trauma that started in February 2020 and this is when my brain no longer worked properly and normally again.

[Lady4 in reply to Tracey0101]

Hi, I don't necessary think your brain is not working properly more that your nervous system is dysregulated. Try and see if they can refer you to an OT specialist too.

[Tracey0101 in reply to Lady4]

OK thanks for that

[Tracey0101 in reply to Lady4]

It's just like a fridge or freezer with a thermostat that is not working properly it feels just like that my brain doesn't work as it used to work.

[Tracey0101]

And fybromyagia can be one of the symptoms of FND

[Lady4 in reply to Tracey0101]

My son had CRPS (leg numbness/thigh spasms) and Chronic pain is note as an FND symptom FM is mentioned on the FND Hope website:

fndhope.org.uk/fnd-guide/sy...