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Hi I'm A Newbie To This - Doodlebodd - 04-15-2011
Hi, I'm Doodlebodd...or Doodlebug as my late Nan used to call me lol.
I put in a search for this SPD thing after my shrink said to me he th inks I've got it. I've never really heard much about it. I am thirty yrs old, was diagnosed with ADHD around 18 months ago which has been a good and bad thing.
I had no idea I had it, but I knew something has been wrong with me all my life and my hearin therapist reffered me to a shrink. I still have no idea why other than she said I seemed to have trouble relaxing.
I put the appointment off for a while but eventually got brave enough to go and try and talk to the psychologist bloke n he said he reckoned I had ADHD. I was ashamed, or am still ashamed as it's mostly associated with kids. I joined an online forum about for Adults with ADHD and have found that we're not all bad.
However there are lots of issues that the ADHD doesn't seem to cover. I write things down for the psychologist as I get embarressed to talk at times and I was due to finish with him last month but he looked over some more stuff I wrote down for him n said he reckons I have got this SPD or whatever it is called to do with sense problems alot.
I have had alittle nose round here and online at what it is and I think it's safe to say yea, it's me. I dont think there are many other things that you can have that make you scared of pieces of paper for instance. Unless thats just me :O
I seem to be a mix though of the things that it says you can get or have problems with because I am terrible with certain noises, certain lights, I dont really like people that much and had to go to a unit for naughty kids when I was at school because I hated mainstream school and all the people there. I never used to talk really to be honest.....
I used to have a baseball cap and keep it right over my eyes, I wouldn't let anyone see me and it was my safety thing.
I could go on and on about the things that make me seem different to normal people but then it would be a very long read so I'll shorten it a bit.
I have ADHD as said above, I have impulses and obsessions the bloke I see calls them. I shout things out, have jumps and twitches alot, do things in certain ways but get major rgaes because I can be very clumsy at times and I have no patience in myself. I go mad when I cant get things right and literally hit myself, rip my hair out, so I've shaved it now to stop myself doing that, I rip at the skin on my chest, punch myself in the head and face.
I also keep getting nasty things happen which one doctor I see thinks is some form of epilepsy but my own GP doesn't think it is so wont send me for another EEG so I'm stuck but it feels like I keep falling backwards alot. It's horrible and I go wild at myself when that happens too because I am scared and I dont know what it is as my GP wont help like they want him to.
I am very scared easily, I hate certain pieces of paper, I cant stand to see them or be near them. My girlfriend has to hide them out of the way and I hate lables and price stickers on things. It makes my skin crawl and my finger go funny. I'm getting the feeling as I type this because of just thinking about them.
I hate certain smells and want to run away from them. I hate bugs and run around like a complete idiot if they come by me. Everyone laughs or torments me about it because at my age I should know better but nothing scares me more than spiders or bees/wasps. I was on a bus one day and a wasp was flying nearby and the bus went round a round about and I panicked as the wasp came by me and I had to get off the bus right away as vomitted just as I got off. It caused me to be late to somewhere I needed to be and I got kicked off the course because of that too
The bus went off and I had to walk and get another bus in the end. I was wondering does this kind of SPD thing run in families at all? I'm not sure my Mam has it but I'm certain she has something like ADHD or similar. I know she has a diagnosis of OCD but she is alot like me in some ways. We are both petrified of hospitals which is amazing since I'm about a thirdway through lots of operations. She isn't scared of the dentist although I am still scared of going. She does say things mostly that she shouldn't, like I do, or she shouts thems out loudly at times when you shouldn't be shouting out so I do wonder really if I could have got whatever is wrong with me from her.
RE: Hi I'm A Newbie To This - AngelaVA - 04-15-2011
Hi! Welcome! If you look into the biomedical theories on ADHD, Autism, SPD, and even Allergies, Asthma you will see theories about how they are all connected and relate to neurological issues stemming from from a genetic predisposition in combination with intestinal issues and an overload of viruses and enviromental toxins. Like I said, it's a theory and very controversial but I've found it seems pretty accurate for my family anyway. (my neurotypical child has allergies and asthma my other child has SPD)
I hope you can find some good support RE the view that ADHD, SPD is for kids and not adults, obviously kids with ADHD or SPD grow up to be adults.
RE: Hi I'm A Newbie To This - LynnNBoys - 04-16-2011
Welcome! SPD definitely seems to run in families. I learned about it when my son was diagnosed, but am now learning all about my own sensory "quirks." I can see it in other family members and I have a cousin who was diagnosed with Asperger's when he was 15.
There seems to be a very fine line between ADHD and SPD, with several symptoms overlapping. I'm sure there are plenty of kids/adults who are misdiagnosed with ADHD when they actually have SPD, or have both ADHD and SPD.
I think as SPD gets more attention and as SPD kids grow to adulthood, we'll be seeing a lot more adults with SPD.
It's always nice to know that we're not alone and that there are others who share the same or similar experiences.
RE: Hi I'm A Newbie To This - Doodlebodd - 04-16-2011
Thanks botjh. I see what you mean about kids with this growing up still having it. Thinking about it, I dont know why so many people seem to think these problems just halt just because we got older.
RE: Hi I'm A Newbie To This - beck7422 - 04-17-2011
I am fairly certain that SPD is genetically linked, especially since it seems so linked to how a person can handle the flight & fight response. It just makes sense that as people evolved some became overly sensitive and others became undersensitive, since there are actually advantages to being more or less sensitive than the average person. Some professions require increased or decreased sensitivities.
For example: Wine tasters benefit from a more sensitive sense of smell and taste. Sports players and soldiers benefit from being less sensitive to pain.
On why people think that problems end when you are 18, I would LOVE the answer to that mystery. I guess the assumption that part of being an adult is that you have learned to compensate for your problems. People are really intollerant towards adults who develop a problem for a first time as an adult (except maybe some forms of Cancer once you start saying the Cancer word).
I have more disabilities than just SPD and co-workers were rarely tolerant of my disabilities, especially when my disabilities required them to make a lot of changes in their own lives just so I could barely function in the work force. Eventually my co-workers rebelled and purposely did things to make my disabilities activate. After being dragged off 3 times in one month from work in an ambulance I went on Short Term Disability that became Long Term Disability and then became permanent Disability.
Doodlebodd, could you describe your "nasty things" that happen to you in more detail. I am familiar with a lot of Neromuscular Diseases because of research into my own problems.
RE: Hi I'm A Newbie To This - Doodlebodd - 04-18-2011
Hi Beck
Thank you for your reply. One thing you said in your post was said to me earlier by the pyschologist about the wine tasting, thats freaky, lol.
What I meant by nasty things was that I keep feeling like I'm falling backwards. Other people, Ambulance staff, other specialists and familyt hink I'm having some form of fits. It can be set off by bright light, funny patterns, TV's, PC screen, fences of allt hings, sunlight coming through trees when your going past them in a car etc.
I've had an EEG but it was clear, but like the ambulance staff who came out a few weeks ago said, the EEG would only pick up if I was having a fit there and then, it doesn't tell them if I had a fit the day before or whatever, it's the there and then. So I think the GP telling me it's not any form of fits is fobbing me off. He thinks because I'm on amytriptaline that it cant be fits because amytriptaline makes it worse. What he doesn't know is that I've cut that down to 25mg a night from 100mg and it's not happened as bad as it was.
He also forgets that I've been on another medication, a hormone replacement that is known to make any forms of fits or epilepsy more noticable. The specialist who sorts my hormones is in London which is over a hundred miles from me so they get my GP to do bloods etc and he has asked my GP to send me for another EEG and to see another Neurologist but my GP wont. The first Neurologist my GP sent me to wasn't very nice.
I can only gather that it's because my GP puts in letters that I have fibromyalgia and once local speciliasts see this, they dont want to know. I was in and out of this Neuros office within minutes. I informed him I had a bit of hypophosphatemia, I keep twitching and he said he didn't have my notes and the phosphate thing was 'interesting' and that he would get my notes and see me in another hospital even more local. The next thing he had written to my GP, told him he had seen my notes and that it was stress.
I'd really like to know where he got stress from because he didn't know me from Adam and he hadn't even asked me anything really, and stress wasn't even mentioned. I told my GP this and he doesn't care. I also saw a local Endo who was very nasty to me and lied to me and my GP. I was there in his room and everything started going funny again, and he even said I looked terrible. I told him that it was what kept happening to me every few days and that I would be sick soon. He offered me into hospital but said 'I will do no further testing for you at all' so basically saying that if I went in I would be wasting his time so I said there was no point. He also kept repeatedly saying it must be a virus you picked up yesterday?!!!!!
He was in a rush to get me out of his room, and I couldn't walk, my girlfriend had to help keep me upright and get me out of the place, he was right up behind us trying to push his way past us. When it opened up a bit more he was tutting n then went round us and walked off in a rush. I then see the letter on the pc screen at my GP's a week or so later and it says exactly 'I offered him in for further testing but he refused' which was an absolute lie. I've told my GP this is a lie and that I'm angry because they could have found out once and forall what was going on when I was there as it was all flaring up but they didn't want to do any tests and my GP just doesn't answer. Since that appointment where I was ill I went to see this local Endo again and recorded the appointment.
I said that 'when I was here last you said I looked very ill' he said clearly 'yes you did' and I said 'you also said that if you had me in the hospital that you wouldn't do any further tests at all' he also said 'yes, thats right I did' and I go on to ask him 'then why did you write to my GP telling him that you did offer me more tests but I refused'. He looked at me a bit odd and said 'I didn't mean it like that' at which point I started to get annoyed and said well thats not what my GP htinks.
In the letter to my GP I also put that I have the whole appointment recorded and I am going to see GP nex week to play it to him if he still doesn't believe me. No matter what anyone says my GP just doesn't want to listen or help me. I am scared of the dentist, but last year I was in alot of pain and had to go. Her name is Julie and she is ever so nice, anyway she calmed me down as she is good with patients who are very nervous, and she looked at my teeth and decided to do an x-ray. She asked me there and then what's happening health wise because my teeth are all funny and not normal.
I mentioned the low phosphate and she said it was probably that then. But still, if she can tell I've got something wrong just by my teeth then I'm pretty sure these doctors can do a bit more for me. I know that whatever is going on is getting slowly worse. I've had two short synacthen tests or whatever they are called to see if I have Addisons Disease too because I kept getting low blood sugars and low blood pressures,. all of which are now being ignored because these tests have been done and have come back ok. My GP said that they can still come back ok though...so I dont know why they are leaving me like this.
I've already told my family to make sure if something happens to me and I dont wake up one day/night, then I want them to make sure they have me opened up and looked at properly to see what it was that has gone wrong. At one point I was soo ill everday and with everything else going on, well I didn't think I was going to last much longer. Infact I know I'm not going to be here much longer because they wont help me, they just keep ignoring me. My Psychologist is trying to help me and is going to write to the GP but I dont think it will do much good. It's mainly about the sensory things so the GP will just blame it all on that. But a persons blood pressure doesn't be too low alot, blood sugars dont fall, and phosphate doesn't be low for nothing. They've tested my waters etc, but it's all been while I've been ok to get into the surgery or hospitals.
It's never when I am so ill and this is what I keep telling them, they had the perfect chance when I was ill at the local Edo appointment, and they cant see why I am so angry about them saying they wouldn't do anything if I did go in. I'm pretty much doomed, so whatever anyone says it could be, there's not really much point because my GPs wont listen. They had a meetinga bout me by all accounts, all the GP's in my surgery did, and well, I dont know what was said apart from I must stop looking for what is wrong with me. Funny because I thought it was thier job to do that, and until they do find out, then I've got to live like it, and I dont want to carry on living like this. Never knowing when I'm going to fall down etc.
That said, they know how hard it is for me, and they wont even fill in a form for me to get some disability benefits. I had to threaten the disability place with legal action if they continued to ignore the things I was writing down on the forms. They had gone by my GP's form he filled in for them, despite them calling me asking me for a name of a specialist who I see because my 'GP hasn't filled in the form hardly'...so I'm pretty much stuffed.
I did get the right benefit in the end, but I've only been getting it for four months and already I have to claim again because it's due to end soon! The only hope I have is the Endo in London who has asked my GP twice to re-refer me to a Neuro since the last one didn't even talk hardly and had me out his room in minutes and my GP still wont. Infact one of the GP's I saw about it said 'if them in London want you to have another EEG and see another Neurologist, then they can send you for one themselevs down there'. It's disgusting since they know some days I cannot get up to go to the loo without being sick everywhere from vertigo, but they still expect me to get to London in the same circumstances. No animal would be left to suffer like this, it's inhumane. I've visited the Dignitas web page a few times now but I'm too scared because I dont actually want to die.
RE: Hi I'm A Newbie To This - beck7422 - 04-19-2011
Have they had you do the 24 hour Urine test? It is something you can do at home or at work (although I recommend doing it in a 24 hour period when you aren't working). That single test will rule in or out several medical conditions that could be affecting you right now.
I am not one to say good things about doctors especially Neurologists. It is shocking how little most Neurologists know about their specialty and how few can handle anything beyond Migraines & Headaches.
You have been screened for Epilepsy? "It can be set off by bright light, funny patterns, TV's, PC screen, fences of all things, sunlight coming through trees when your going past them in a car etc." This bothering someone is standard for Epilepsy or SPD.
I don't have Epilepsy, but all of them bother me. I count it part of my light sensitivity. The Irlen Lenses does keep the light from triggering attacks.
I have heard there are some top world Neurologists in London, England. They aren't the nicest people, but they are considered good doctors. If you want I can get their names for you. I think Dr. Hanna is one of them. I am not certain this is the right Dr. Hanna.
http://www.thewellingtonneurologyunit.com/team.asp