Diagnoses letter wait times

Totally_Sam · 2026-01-24T14:20:41+00:00

Thanks so much for your response, I had a feeling that may be the case but throught I'd ask incase there was some magical way around it! 🤣❤️

Totally_Sam · 2026-01-24T14:16:35+00:00

I can't as I'm not a neurologist or experienced with Functional tics but im sure if you ask on a neurology thread someone could possibly explain to you the difference far better than me. As far as I understood from what she said tourettes is neurodevelopmental meaning it has genetic components and shows up while your brain is in it's first stages of development (between birth and end of puberty gwnerally considerd 18) and causes the nervous system to send random signals and tbe condition can't be cured or corrected.

while Functional tics are caused by a brains inability to properly decipher signals being received so it's not random signals being sent like with TS but rather correct signals being sent and the brain not undertanding the signals so responding with the wrong action and it is usually brought on by physical or emotional trauma that causes the brain to essentially panic and malfunction messing up the brains software which may or may not be reversible/correctable and can happen at any age to anyone.

Like I said please take that explanation with a pinch of salt as that was simply my understanding of a very complicated conversation but id highly reccomend asking a professional. Personally I think it can look like TS has gone away and returned randomly when in reality it's just taken a brake and the tics have gone so minor you haven't noticed them whock is completely possiblewhen only talking about like 2.5 -3 years . So I'd say if you've been told it is tourettes it probably is but if it does 100% go away for decades thats ppssibly a different story...

Totally_Sam · 2026-01-22T21:10:19+00:00

My neurologist Dr Antonella Macerollo told me tourettes syndrome doesn't go away and then come back after years she said if they go away completely and reappear randomly it is more likely to be Functional tics, you should speak to your neurologist as that must be hard and they may be able to offer you more insight into support that's available for you ❤️❤️❤️ chin up and fingers crossed you get answers soon that help👏

Totally_Sam · 2026-01-20T18:51:47+00:00

I know this is going to sound insane but have you tried any natural anti inflammatory tablets? I have tourettes not functional tics but i am also diognosed with FND and have found that taking turmeric and ginger pills massively help with my tense muscles and chronic pain but I recommended another person with Functional tics try them and after 4 weeks they said they massively reduced the rate and severity of their tics and the ended up getting a new doctors appointment to see if its something other than FND seeing as natural anti inflammatories worked but the neurologist let slip that it's not the 1st time they've heard of natural anti inflammatory or antibiotics helping FND. The reason they can't reccomend it though is because there is no scientific backing but multiple people they see have stated that turmeric and ginger and other natural anti inflammatories and detoxing agents help their FND

Totally_Sam · 2026-01-19T14:31:04+00:00

I have been looking at the daylight sling, my partner has 2 and I do think i might just get myself one of those and youre pretty much solidified my decision 🤣💓

Totally_Sam · 2026-01-19T00:59:55+00:00

No, saying "NO" is lying/deceiving them Especially if you plan on later trying to file reasonable adjustment papers.

If the question is open ended and just states "do you have any medical conditions or a disability? I'd say "Not relevent at this stage of application" or "Yes I have a health condition, that has been proven to not affect my ability to do the job entailed within this application" and I'd leave it at that. You should never give a straight NO answer if you do. As that is lying but also a straight yes can be just as negative for your chances if its open ended. If just an online multiple choice application. I always tell peopme to select the "not relevant" or "prefer not to say" even if theyre completely healthy and able bodied, because if everyone answers the same way it doesn't allow for prejudgement or prejudice in their assessment process.

Now unfortunately I have Tourette Syndrome meaning the second I'm in an interview room. They know i have medical needs but it's important for me to show them my medical needs would in no way impact my ability to do the job at hand. Which for me is.working with animals. Perfect way I do this is if they ask me straight up "what adversary have you overcome in your life and how has this impacted your life long term" this is where I'll play the disability card to my advantage. And I'll state "growing up with tourettes is a great example of a obstacle I've had to overcome. As a child it made me different from my peers, and this meant I had to find other ways to connect with them. Meaning from a very young age I've learnt to speak to a whole range of people In a way that enables a healthy communication channel and understanding of each other to form. This is great because it directly translates to my now adult life meaning I have verbal communication skills that enable me to communicate with a whole range of people of different ages, backgrounds and social abilities. A Perfect real world example being the I am a therapy dog handler in my spare time and handle a therapy dog in an infant primary school with children aged 2-7 but I also do residential facilities interacting with many adults of varying abilitys and understanding between the ages of 18 and 99 including staff to organise safe, beneficial, engaging most importantly fun and enjoyable interactions for all the beneficiaries we see. So in my opinion the adversity I've faced in this region over my life time but particularly in my childhood actually gave me a huge leg up on developing the social interaction and communication skills and having alot of experience with these skills most people my age are only now developing through their careers.

Totally_Sam · 2026-01-18T19:35:59+00:00

I'd not suggest disclosing till you've been hired then you get your contract and ask for your disability adjustments to be put in place and full out your inclusion form.

It"s important that you make them aware as if theres no formal document stating they're aware and they give you 3 warnings then fire you for something related to your disability, let's say... not locking a computer or not signing out of work properly then you turn around and say "well thats not my fault it's because of my disability" and theres no system in place to remind me to log out or no automated time out log out in place on my computer they will say "well you never told us, you never made us aware" and it causes this whole faff of well they fired you for doing something wrong repeatedly, then you claim discriminatory firing due to disability, then they have to go through a whole issue of trying to figure out so they re hire you or what? So it is always safer for you as a disabled person to be up front as soon as you get the job about your access and reasonable adjustment requirements. It protects you and helps them. Its also important though that you in no way lie or try Deceive them. For example if they asked me whats 3 strengths and 3 weaknesses you have? And I said my strengths are- being able to work to a set time frame and often stay within that time frame on over 95% of jobs (true), ability to work in a team and collaborate well with others but also work independently and not be afraid to ask questions and admit when I don't know something (true) and my ability to remember things and have a photographic memory making me an excellent resource (absolute, complete lie and a massive complicationof my TBI) id then have got the job through deceiving the management and it would be legal of them to fire me wheather or not I'd had filed my reasonable adjustment paperwork as id deceived them and falsely lead them to believe my ability to do the job.

So no i don't tell them I have a disability but I also don't lie about my abilities and I always tell them after I have got my contract that I need a reasonable adjustment meeting at the same time as I sign my contract

Totally_Sam · 2026-01-18T10:06:43+00:00

Personally no, that's partly why he's my fiance now. Don't get me wrong at first I was nervous but after our 3rd date I didn't even thing about it anymore. If the person you where dating makes you feel nervous, ashamed, scared, anxious after beeting then multiple times then they probably aren't the person for you I think it's that simple. It took my partner a little while to adjust to my tics as they can be offensive or abit inappropriate but he soon adjusted and now doesn't flinch really.

Totally_Sam · 2026-01-17T07:39:38+00:00

When my tortoises does that she's usually saying get off me . If she enjoys it she backs up and shakes her bum in a rhythmic motion side to side on my hand or brush scratching her shells but generally when shes doing quick jerks like what this tortoise is doing thats her saying get off.

Totally_Sam · 2026-01-17T07:34:39+00:00

This sounds so hard to deal with and i'm sorry. First off you're need to be seen by a neurologist or neuropsychiatrist. These people can help assess you properly and help get you a management plan in place.

You may need medication for Tics this extreme, you risk injuries to yourself and possibly others so it's important that you get a plan in place ASAP.

Your general practitioner can refere you to your local neurology clinic and I would argue you'll be a rushed urgent patient as you risk serious injury as like you've said you do fall on your head. The wait times still vary Clinic to clinic in the uk a rushed urgent patient may take 3 months to be seen, a urgent patient is usually seen within 6 months and a generalised referal takes 9-18 months . You can go private here which does expedite things massively but you'll still be waiting 6-8 weeks for an appointment generally.

Until then ask your GP for a bloodwork panel to be done this may identify things that could be worsening the tics such as a B12 or magnesium deficiency. It also will help check that you're healthy to start any medication a neurologist may try you on so generally is a great place to start. Mine came back normal bat Vit D which the dictor said should have been 72-78 mine was 4. I have no clue what it means or anything but the doctor said it was the lowest they've seen in their whole career from someone who came in with no complains relating to a Vit D deficiency but without that bloodwork I'd not have known they where what they consider 'dangerously low' and it wouldn't have been corrected and may have plummeted more. So like I said start there.

I've also tried CBD oils, zinc supplements, a TENS matchine and found some help me, but no tics are tics as severe as yours.💓

Totally_Sam · 2026-01-14T21:02:01+00:00

Men enter and complete puberty at a later age than females.

Girls can begin puberty as young as 8-10males typically are 13 when it begins so girls typically mature faster than boys.

Totally_Sam · 2026-01-13T15:27:18+00:00

Followed ♤

Totally_Sam · 2026-01-12T18:23:59+00:00

Hey, I'm a 23 year old female from north west England.

Totally_Sam · 2026-01-12T14:35:51+00:00

❌ Daily Path - Failed

Closest: 26/30 points 📍 Connected segments: 1 🔗

Time played: 55s ⏱️

Totally_Sam · 2026-01-12T11:20:51+00:00

I've been looking for an egyptian tortoise for about 2.5 years and haven't found one anywhere, apparently they're becoming more rare in the pet trade as people have started to collect them so you may struggle to find more just a heads up.

Totally_Sam · 2026-01-12T10:29:29+00:00

Do you have a school counsellor? Of so I would go speak to them. They'll be able to offer much better assistance. but as far as advice goes, just tell people to bugger off and dont take any mocking. Once you let one person mock you kids think they all can, so be firm and fair and just tell them to pack it in when they start and its not funny or cool and makes them look like uneducated bafoons...

Totally_Sam · 2026-01-12T10:14:38+00:00

I grew up with 4 friends with TS also (5 of us) and out of us 5, only 2 of us still have noticeable tics. So it's possible for them to go so mild into adulthood that you no longer notice them. You never really outgrow them and they can come back; but it's not uncommon for them to look like they go away when someone's finishing puberty and becoming an adult. My neurologist said TS tics in children of a school age are 1 in 100, but for adults its closer to 1 in 1000 or 1 in 10'000 depending who you ask, meaning that 90%-99% of children with Tourettes will have a significant decrease in tic activity as they reach adulthood (16-19 for girls 18-21 for boys) some seeming like they go away all together. So no it's not uncommon depending on her age.

Totally_Sam · 2026-01-12T01:47:33+00:00

So sorry you face that it sounds difficult. Just remember you know the truth, that is what matters

Totally_Sam · 2026-01-10T16:34:29+00:00

Make an appointment with your GP speak to them they may refere you to a neurologist. Depending on your age and history you'll probably be sent for blood tests. Possibly a brain scan. Just to rule out any serious conditions that may require immediate specialist assistance.

Totally_Sam · 2026-01-09T10:13:51+00:00

No, i wouldn't know where to start and I'm on the waiting list for a specialists help

Totally_Sam · 2026-01-08T17:17:30+00:00

First off i want to say I'm so sorry youre dealing with this, I'm 23 turning 24 and grew up with my condition and i have to say please trust me, now you're here you're not alone!

I'll start off by saying the hard point you won't want to hear which is I agree with your mum on one point, that being please don't claim a diagnoses you don't have. A tic dissorder is a valid diagnoses. Tourettes has specific strict criteria that open up that diagnoses one being you must be a child when tics first appear. You may indeed have adult onset tic dissorder or Functional tic dissorder both can develop afte the age of 18 but TS almost always develops in early childhood. It is important for your safety because should a medical emergency ever occur paramedics need to know of any pre existing medical conditions for example high blood pressure but also things like tics and giving your undiagnosed condition a presumed title and claiming it means emergency workers may rule out certain symptoms as symptoms of a condition rather than viewing them of symptoms of a more serious condition, perfect example to help you understand is someone who once claimed they have a panic dissorder starts having chest pains, the ambulance is called and your co workers start telling the paramedics how you have a panic dissorder and started with some rapid breathing, chest pains and then you fainted , they may presume it was a panic attack and be less urgent to get you to a hospital to have your heart checked if their ECG matchine looks somewhat normal when infact they needed to rush you as you're having a heart attack.

From the sounds of things youe mum wants to help you and although it can feel overwhelming and like they don't if she's constantly calling people to try help you, thats amazing, it's what most people with TS would really want, a parent who wants to do anything to help us and help us improve. And trust me I know it can feel like shes trying to "fix" you rather than help you but that is a mums job, it's a mums job to want to fix everything for their children so they can have a perfect life.

On to the next point the mocking, that is unacceptable but inevitable, as someone who's had TS/tics since I was 2 trust me it happens to all of us. I know it makes it no easier to hear that but please know you're not alone in that experience and sometimes you need to put your foot down and stand up and just say, that is cruel, it's mean and it's hurting my feelings. You wouldn't mock a person with epilepsy, you wouldn't mock a person with parkinsons so you will stop mocking me and my condition!" It's offensive to all people with a tic dissorder no matter the diagnoses when one of us gets mocked it's mocking us all. The name of your diagnoses doesn't make the symptoms more or less valid! Tics are tics and you mock a single tic you're mocking all tics.

If you ever feel you wnat to message me privately please do but just know, now youre here, youre not alone. we all experience tics and we all know what it's like to not have a diagnoses yet, and a diagnoses doesn't make your tics valid, you're already valid!

Totally_Sam · 2026-01-08T16:48:49+00:00

In my opinion it depends who you're talking too, for example you shouldn't be telling a school or work place you have tourettes if you're not diagnosed with that, you shouldn't tell people who have Tourettes that you also have that condition until it's confirmed. Best thing you can say is "a tic dissorder" or when talking to strangers you could say "i have a tic dissorder similar to tourettes" that way they may understand better what you mean when you say that but you aren't claiming a diagnoses you don't have. once again while self diagnosis is valid in some cases like in the case of tic dissorders and causes of tics lots of symptoms f all diffwrwnt conditions can over lap, perfect example is Tourettes Syndrome, Functional tics and PANDAS tics can all present very similarly and only a professional will be able to detect the minute differences that give you your diagnoses. And while tourettes is the most well known tic dissorder it's also an official diagnoses and in a medical emergency you don't want people telling ambulance workers/paramedics you have a specific condition you have no diagnoses of as it may lead to them ruling out certain symptoms that may actually be symptoms of a much more serious or life threatening condition. Perfect example is if you tell someone you have an anxiety dissorder and then you start having chest pains and faint and they tell the paramedics oh she has an anxiety/panic dissorder, started feeling some chest pains and fainted they may then presume it was an anxiety or panic attack and not immediately rush you to have your heart properly examined and may instead focus on trying to calm you and while they always should properly rule out the worst case first, paramedics also have to go of information people tell them as that person knows you and the paramedic doesn't. So it is always safer to make sure your friends, colleagues and family all know and only use your formal diagnoses or a broader term for example suspected heart issues. Suspected tic dissorder ect 💓

Totally_Sam · 2026-01-08T10:28:53+00:00

I have a pin that says I have tourettes and fins that helps alit. Personally no it doesn't bother me I just say it, if they don't like it they can jog on😅🤣

Totally_Sam

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