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Dec 16, 2014 6:48 PM

My pain management refered me to Dr Caroline Mckenna from the Tavistock unit. I went and saw her on the 21st of November and had a full psychiatric assessment. This is her letter, anything in CAPITALS is something that is incorrect and i will mention after the letter:
" I saw Reece on the 21st of November 2014. I was familiar with the background history following our discussions and recent conference call with Dr Laurent, Consultant Paediatrician and Alana Kyte, Physiotherapist. I have now spoken with the school and local CAHMS.

I will not repeat the background information in detail as it is well documented. Reece's history is complex. Two Years ago he was diagnosed as having Autistic Spectrum Disorder. He also has a long history of anxiety and has been KNOWN TO CAMHS SINCE THE AGE OF SEVEN OR EIGHT YEARS. He continues to take Fluoxetine 20mgs daily.

In August 2013 he and his mother were involved in a road traffic accident following which he developed low back pain which has persisted and for which he has had investigations, an admission a paediatric unit and TO A AND E. He has been prescribed various drugs. The situation has continued to deteriorate such that Reece's school attendance has dropped off very significantly (TO 25%) and he is USING A WHEELCHAIR WHEN OUT OF HOME. The working diagnosis is of non-specific back pain associated with deconditioning. I understand that an MRI of his whole spine showed an incidental finding of A SMALL SYRINX in the cervical region.

Additionally Reece has a high BMI and achieving and sustaining weight loss is difficult.


Reece told me that he has always wanted to study medicine. In his view he is being held back from potentially achieving the necessary high grades in his GCSE levels (due to sit this year) BY DOCTORS NOT ACCEDING TO HIS REQUEST FOR MORE OR DIFFERENT PHARMACOLOGICAL TREATMENTS.

I was interested to hear a description from Reece and his mother that had i met them in the early part of 2013 they both would have reported a busy life doing many activities together - bowling, swimming, golf, eating out and going to the cinema. All of this has stopped since the car accident in August 2013. Reece informed me that there is a claim pending. He initially stated that he wanted to make sure that he got as much money as possible because of the cost of funding medical school but he retracted his statement and said what he really wanted was not to have pain which I am sure is the case.

Reece lives with his mother and maternal grandparents. For many years he did not have contact with his father and even now sees him perhaps once a year and they do not have a close relationship. Ms Browne has had to alter her working hours in order to spend more time at home as she does not want her parents taking on care of Reece given their age.

When I saw him on his own Reece described SHORT PERIODS OF LOW MOOD OVER SEVERAL MONTHS associated with tearfulness and an ongoing worry that plans are not in place to manage his pain. I was not concerned about his mood when i saw him in the clinic and although his thinking is very concrete and he is intensely preoccupied with his his own agenda his presentation does not fit with an emerging psychosis. HE WAS NOT SUICIDAL but has a previous history of self-harm by cutting that HE RELATED TO STRESS AND BULLYING AT SCHOOL.

Ms Browne is very aware that Reece's preoccupation WITH PHARMACOLOGICAL treatments is extreme and she understands this preoccupation to fit with the diagnosis of Autistic Spectrum Disorder.

I am very pleased that you are currently reviewing Reece's pain medication. He has as you know been on a combination of Gabapentin, MST, Melatonin, Topiramate, Diazepam and Fluoxetine. I noted in recent email correspondence that Reece of his own accord increased his Melatonin from 4mg to 6mg. Although this change in itself is not serious it raises a concern THAT HE MAY SELF-MEDICATE. I was also concerned about the risk that REECE MIGHT BUY MEDICATION ONLINE but Ms Browne thinks she would know if this is happening.

There is no doubt that from Reece's perspective he has disabling back pain but if, as it seems the case, his investigations have not revealed sufficient physical cause, it maybe BE BEST TO CONSIDER HIS DIAGNOSIS NOW AS ONE OF THE SOMATOFORM PAIN DISORDERS with the precipitant being the RTA in August 2013. There is now a very stuck situation with the perpetuation of a cycle of secondary problems - muscular deconditioning, decreased mobility and increased weight.

The key but also the biggest challenge is to alter Reece's expectation around management of his pain and to help plan and effective way forward where he understands THAT NO INVESTIGATIONS ARE INDICATED, THAT IT IS BOTH SAFE AND NECESSARY FOR HIM TO MOBILISE AND THAT NON-PHARMACOLOGICAL TREATMENTS CAN BE VERY HELPFUL. However his rigidity, lack of flexible thinking and intense preoccupation with his own agenda will get in the way of change and may mean that it is COUNTERPRODUCTIVE TO CONSIDER A BRIEF IN-PATIENT REHABILITATION ADMISSION AS THIS COULD REINFORCE AN ILLNESS PARADIGM.

It may be in the first instance a piece of work could be undertaken with Reece as an outpatient perhaps here or through his local CAMHS.

Once I have had further discussion with CAMHS colleagues, I will arrange to meet with Reece and his mum again to decide the best way forward.

I will write to you again in due coarse

Yours Sincerely

[Her letter Signature etc.]"

1) I've been known to CAMHS since I was 10 or 11
2) I was in and out of A and E all the time not admitted to it and was in the paediatric unit 3 times
3)My school attendance is below 25%
4) I only use a wheelchair at school or on very very long trips (apart from that i don't go out)
5) It is not a syrinx it is an Undissipated Central Canal
6) I don't care how my pain is managed as long as it is managed however i know that pharmacological therapies combined with other i.e. physical therapy or psychiatric is more effective. That does not mean i don't want psych help etc. without drugs.
7) My pain is 9 out of 10 daily and i didn't move barely at all in the meeting so how could body movements factor in and my demeanour was "Do something NOW"
8) It doesn't matter to me if it is my opinion on which treatment i have or theirs which is offered they aren't offering any. THAT IS WHY.
9) The low mood isn't low mood it is diagnosed clinical depression and it is not over short periods it's constant
10) I am suicidal i said "I wish i had died in the crash" and also said " I wish i was dead because i can't live with this"
11) I did not relate it to stress and bullying i said it was caused by my depression, suicidal tendencies and stress [back then]
12) Again doesn't have to be pharmacological but i do believe it should be a combination
13) I would not self-medicate. I had upped the dose of Melatonin because when i was prescribed it I was told I could take 2mg-6mg. I couldn't and still can't sleep so tried upping it for a few days to 6mg (LIKE I AM ALLOWED TO)
14) I would never buy medication online, it's stupid. You don't get what you order if i ordered anti-histamine i would probably get histamine
15) SOMATOFORM ILLNESS!!!!!! (I'll come back to this)
16) No investigations are indicated. I am still in pain, yes? yes They still don't know why, yes? yes does that mean they should do investigations to find out? Yes
17) I know that it is safe and necessary for me to mobilise but i can't because my legs don't respond properly which is why i need intensive inpatient rehab

Somatoform illnesses, for those that don't know, are illnesses where the patient feels the symptoms and is not trying to get attention. It is a mental illness where you feel a physical illness that has no physical cause.
This diagnosis is stupid!!!! For a start the person that came up with the diagnosing criteria for it admitted that they would cause over half the world to be mislabelled as having them. In other words this is a misdiagnosis and because of this dumb b*tch they might take away all of my meds!!!!! My medication don't even control my pain as it is, imagine me without them completely!!!

Why do doctors hate me? Why do they want me to be in pain? Why won't they do anything for me? WHY ARE THEY ALL SO TERRIBLE


Dec 16, 2014 8:14 PM

Wow... You said a bit more than a mouthful which is why I took an hour for me to comment. I feel that in most cases if it can't be observed by medical equipment, or some type of measurement device "our Medical Community" or western medicine seem to use science to explain away our ailments. It is frustrating when we go in for help and instead we get what each practitioner's idea on how to proceed with the data given. We are not the medical professional, we just want the pain to go away or just get some type of relief.
I am glad you were able to vent your feelings here as I believe there are others that feel that statements they made while in high states of pain were used against them during an interview for future treatments. We know if you switch MD's the new MD may want history/ opinion from previous. This may happen even if that professional draw-out their own plan.
My Suggestion is keep pain journal, get non evasive tests done ( blood work, MRI, EEG, EMG ) when they are appropriate (insurance approved). Our MEDICAL SYSTEM IS BROKEN. The doctors can only order what they can justify to insurance or collect from the patient. Our $12 - 30 payment will not keep the lights on.
I am taking a break here because I'm still in high state of pain, I understand how you must feel. YOU ARE NOT THE ONLY ONE. DON'T FEEL ALONE. πŸ˜¬πŸ˜¬πŸ”¨πŸ”¨ Hang in there, use what energy you have to search out tools that work for you.

Dec 16, 2014 9:32 PM

I'm sorry to hear about your situation. Now I don't feel so bad about mine. Good luck and I hope you find the help you need! Hang in there.

Dec 17, 2014 4:18 AM

@fjhatch I'm in the UK so NHS even worse, also I will ask for an EEG and EMG but i have asked for an Electromyography before and because it uses needles into the nerves or muscles (surface EMG's aren't accurate at all they're useless); they said no. I've got my appointment in 43 minutes. I just hope they do something useful not the opposite.

Dec 17, 2014 4:19 AM

@aleshataylor I'm glad to hear your feeling a bit better, I hope that continues and @fjhatch if you need time take time. I'm here for you if you need me

Dec 17, 2014 7:06 AM

Just come out of the appointment. They aren't taking my meds away but they aren't going to do anything. I was supposed to go into hospital for intensive physiotherapy and intensive psychological therapy but because this Dr. Mckenna said it would "reinforce an illness paradigm" they're not don't it anymore! I should prosecute them for gross medical negligence!

I need advice please help

Dec 17, 2014 8:03 AM

Reece-have you had blood work done or did you suggest it? Where are your parents with all this?

Dec 17, 2014 10:09 AM

Here is the list of what I asked for:
-Get Referred to a Rheumatologist
-Get Tested for Fibromyalgia
-Get Tested for Genetic Defects
-Get Blood work to check for Lupus
-Get Saliva test for everything from metabolism to cortisol and deficiencies etc.
-Ask about Biofeedback treatment (I want it)
-Ask about D-Ribose (I want it)
-Ask about epidural steroids, nerve blocks and facet joint injections (the problem is, due to my Allodynia etc. i’d need general anaesthetic)
-Ask for an EEG
-Ask for an EMG
-Ask them do do something to help my pain if all else and other research fails

They said no to everything even the last one. they did nothing no blood work no nothing. I have had some blood work done, my GP was willing to do it so i'm going to ask him about all of this the blood work first. If you want to know about any blood tests i've had say which ones i.e. whole blood count (also know as full blood count) which was normal

Do you or anyone else have anymore advice please i need help

Dec 17, 2014 11:45 AM

They told me the reasons why for some of them
the reason for the injections (Epidural steroid, nerve block or facet joint) was that there was nothing on my MRI that indicated i should have it! but surely my pain should be enough!

Have any of you had these injections with only coincidental findings (or nothing) on your MRI? (I have an undissipated central canal which they believe is a coincidental finding and either from the car crash or birth)

Dec 17, 2014 9:22 PM

Maybe your doctor is right? You seem too adamant he is wrong.

Dec 18, 2014 12:35 AM

I'm adamant that they are wrong because I have access to the guidelines that doctors are supposed to bear in mind and in many cases follow in the UK but they aren't. They didn't do anything they're just leaving me here to be in pain forever and that's no way to live

Dec 18, 2014 10:27 AM

Keep strong, Reece and find another doctor. There has to be someone to take care of you and ease your pain... Try a natropath. They may have more success and not pump you with drugs that can cause issues of their own.

Dec 19, 2014 8:52 AM

Hi Reece, I know it's tough convincing doctors they should listen to the patient - no one knows what it feels like to be you but YOU. I know this isn't the cheapest option but the Optimum Health Clinic is something you should definitely check out.
They offer lots of free stuff about chronic pain causes and management but also offer free 15 minute chats to see if it would be worthwhile for you to go on a course with them. They have helped many of my family members and I am about to do one of their courses, it combines psychiatric with medication and nutrition. They are the only people who look at the WHOLE picture, not just one specialised field.
Anyway thought I'd bring them to your attention, and I am sorry you have so much to deal with.mi hope it gets better for you.

Dec 19, 2014 2:16 PM

Thank you Charleston, I'll look into it but if it's in the USA I don't know if I'll be able to

Dec 19, 2014 2:18 PM

Plus if it's too expensive.
Also @charleston do they prescribe if needed and do intensive therapies (both psychiatric and physical)

Dec 19, 2014 2:24 PM

Reece, I'm very sorry you aren't finding any answers as to what & why you're in pain. I've been there, just wanting to know "what's causing my pain."

Having incidental findings on a recent MRI, I requested further tests from doctors that specialized in those areas (ie; lung nodule-pulmonologist, thyroid-general practice ordered ultrasound).

From my understanding, fibromyalgia isn't something they test for as much as symptoms displayed on examination and long-term, when other medical conditions have been ruled out. Fibromyalgia is a real condition that can cause pain to the point of non-functioning. It increases & decreases in intensity without schedule or pattern for most. Different treatment methods work for different people. I've had fibromyalgia for over 5 years, following a major reconstructive surgery. I don't know if it's the major cause of your pain, but in many cases it follows a severe illness or injury.

Reading your message, I feel you are extremely stressed and agitated. Its ok to feel angry and upset, and its better to express yourself than hold it in. If you dont already have some type of relaxation process, you should find something that works for you. Find a way to destress and relax your body. Stress & agitation will only increase the pain you feel, especially with fibromyalgia. Do you do anything just to relax, like reading (non-medical) books, or playing music, or yoga or something? Even getting in a quiet, dark room, and doing deep breathing for 5-10 minutes can help you relax.

As for the doctors, they are only human and not miracle makers. If you are unhappy with your doctor & feel they aren't listening, that would be the main reason to change doctors. I've seen many recommendations for holistic health care on this site. And since I've tried everything else with few good results for multiple problems, I intend to make that my next step after the holidays.

Saying prayers & sending best wishes for a more healthy & less painful year ahead, for you & all on this site. God bless!

Dec 19, 2014 2:31 PM

@Flappyslady81 I do have some relaxation techniques which i used to use but no longer work very well. I'm still not sure what my pain is an from the seems of ur unless I pay for it i never will. Thank you very much for all of your help and if you think of anything else please let me know.

@charleston Also do they only do Fibromyalgia and ME/CFS because in their site it says that is their specialisation. Have your family had good treatment for other things?

May 22, 2016 12:38 AM

Sorry you're dealing with all this nonsense. I remember first trying to get help, and my primary care (only option, insurance won't cover specialists unless you're reffered...it sucks) told me I "just have carpal tunnel" and refused to send me anywhere else.

I think you may have gotten a similar doctor. I don't understand where your doc made many opinions(!) about your psychology. Is that her specialty?

I also understand about being ignored, or "its all in your head" and "we can't try that treatment." If you want the nerve block, suggest the nerve test. My neurologist told me I should have tests done to rule things out, and suggest new directions to help.

Don't give up! Keep trying, and hopefully you'll eventually found an understanding doctor. I also know a bit about medications and such, but because I'm a teenager, the docs will be pressed if I mention that straight up. I don't know why, but often if I stay quiet, answer questions, and deal with one topic, more will get done. It took me a year to get treatment going, but I got some help along the way.

Remember that you have trust to build, and that humans make stupid awful mistakes sometimes. I hope you can find someone you can trust, and are willing to spend time trying all the different meds until finally something works. Best of luck! β€πŸ‘£β€

May 22, 2016 8:56 AM

This was a doctor I was referred to for a psych Eval and to see if there were any therapies she could offer that might help. She was a psychiatrist and a b***h. I've since left that pain clinic, formerly complained about her and challenged her judgement and am at a new pain management clinic that is taking me seriously and is trying to do everything that they can for me (including medication, physical and psychological therapies - I am on the waiting list for some of them)
I have to go but will pop back and finish this later (if I remember, knowing my memoryπŸ˜‚πŸ˜‚)

May 22, 2016 3:50 PM

If you do have ASD, it might be worth getting a rheumatologist to assess for EDS (a joint hypermobility disorder), as community anecdote strongly bears out some kind of comorbidity.

Honestly I feel like the doctor is being quite prejudiced against you as a result of the perceived autism, and quite likely completely misread your body language.

May 23, 2016 1:46 AM

You have to have a specific point of pain for steroidal epidurals, such as a problem at L3/4 or C5/6 so they can put the injection right into the point of where the problem shows on MRI. They target specific areas not just a general blanket pain relief. Dissipated means scattered, if undissipated were a word then it would mean un-scattered, I'm not sure what you mean by undissipated central canal? Is it central canal stenosis? Narcotic Pain relief will not be helpful in the long term, as you know, your body gets used to the dose then needs more, carry on the cycle! It's unlikely you would get inpatient rehab as generally there needs to be a diagnosed issue, which, for whatever reason they are not able to provide you with- which must be very frustrating. Why don't you ask to be referred for hydrotherapy, this is something you will be able to do. I'm quadriplegic and have regular hydrotherapy as it is so beneficial Because of the water temperature, you are so buoyant, you will be able to do gentle exercise. Hope things work out for you, and you find what it is you need.

May 24, 2016 5:06 AM

@JAHMAC At that point they told me it was "dissipated" they actually meant "diolated". In my C spine is a small growth that they originally thought was a syrinx but then had a specialist look at it who told them that it was a diolated central canal

May 24, 2016 5:07 AM

@dreadkitten I do have ASD and I have looked into EDS. My condition occurred after a car accident though but I may still have it as I seem to have many symptoms

May 24, 2016 9:31 AM

Makes more sense as dilated would mean it's likely spinal stenosis-narrowing of the spinal canal.

May 26, 2016 9:19 AM

Dear Reece,

I feel a frustration for what you are going through. I may need to write a couple separate remarks so that I don't confuse my thoughts of what I am trying to get express. Correct me at anytime if you do not understand or disagree with what I am writing. You are important and I do hope that you are able to figure this out. I am glad that you are asking questions and sharing.

Please understand that there will be people in your life that will support and appreciate you. Other times if you are not making a connection after a couple tries it is time to move on. I don't know how old you are. With ASD I understand that you may have the ability to hyperfocus on things which can be a great asset in life, but can have its challenges. Many people don't understand this and may feel threatened by this. You are testing their knowledge. I see it as something you are interested in and will study it immensely. They may react harshly. It may be challenging for you to read or understand others. The same for them with you, they may think that if you are not reacting it is not because you are not interested or stubborn. But don't get that it could be a processing issue. You did state you sat a certain way because you thought it was the acceptable way. My daughter became very flat and quiet at the age of two. People just thought she was shy, daydreaming or not paying attention. Her marks in school were very low. Now we understand that she has challenges with focus, sensory and processing issues. Reading people's ques. Growing up was such a sad time. There was a time of depression and lots of anxiety, that she would become dizzy, dissociate, disoriented or run. Then exhausted. She has ticks, repetitive behaviours that people don't understand. She does self harm when stressed. This is a sign for me that something is going on and she is unable to express herself. But I encouraged things she loves so that the tough challenging times are balanced with some great times. She can get a break. She is a very bright teen with an average of about 94%. Once in a while I see teachers who doesn't get the challenges. They well low ball her marks. I tell her that this is a good test and practice for the real world. It is not just teachers, it can be family, the general public, doctors, etc. We do not need to please everyone. Do YOUR best, educate and advocate for yourself.
You talk about pain. You maybe less or more tolerant to pain. But I do think it is not good to ignore it or accept it is in your head. What ever it is, it is your pain. Again back to processing, this pain may be different for you knowing that you have an ASD background. Here in Canada a Rheumatologist can diagnose Rheumatoid arthritis(RA), fibro, Lupus. People above have shared some great information. RA is diagnosed by bloodwork, X-ray, physical exam and your history. Fibro is diagnosed NOT by bloodwork. It has to do with symptoms, type and amount of time. I don't know about Lupus and some of the other things. Some of the tests you talk about are they available where you live?
Use this app to help identify your symptoms, when they occur, type of pain, what helps, what makes it worse. Critique the app to your needs. If you do have multiple problems or a flair like I do this complicates things and thus need to continue documenting. In your psych evaluation, I think it is awesome that you went back through it to correct things that you feel are not correct. I was also impressed that you knew to ask for a copy of this letter for your records. I don't like when a doctor zones in on one thing and drops the rest of the the whole picture. You are not just a diagnosis you are a whole person and I believe and feel more comfortable if treated this way. Example if you have problems with pain this can challenge your sleep. If you don't sleep well this may effect your mood.
I have found out the hard way that telling doctors what I want will make them very judgemental towards me. If by telling them about the symptoms and examples of the above this might help. Please understand that some have a complex and don't want to be challenged, they believe they are smart and know what's best. When challenged they well become less welling to brainstorm and less accepting you as a whole person with multiple needs. If you can take someone with you to your appointments this may help confirm your thoughts and understanding.

In the past 2 and a half years I have tried to learn about ASD so I can better understand, advocate and support my 16year old. My daughter finally got a diagnosis in grade nine. Now finishing grade 11.

Thank you for sharing. Beets

May 29, 2016 4:43 PM

@JAHMAC I will check with my doc about spinal stenosis. I am requesting a copy of my MRIs on CDs so that I can look at them myself as I know what I'm doing when it comes to medicine :) so I can look at my own scans and look for stenosis too.

@BeetsRGood I'm 17 and do have the ability to hyperfocus, pay extreme attention to detail and also focus on things intensely and for a long period of time (such as medicine, I wang to be a doctor and I love the field so I do a lot of research into all sorts of different things).

I sat completely still lent slightly forward so that my back did not touch the chair (I have allodynia, in other words, my back cannot be touched).

I also have compulsions or 'tics' and only a few people understand and they are either doctors, autism suffers or parents of those with autism as well as the occasional really understanding person.

I also have problems with clinical depression and various anxiety disorders (e.g. Generalised Anxiety Disorder or Panic Disorder). I have problems with self harm too as well as with suicidal tenancies.

I have been tested for various conditions. I am in the UK and have the NHS so get free healthcare BUT ONLY IF the doctors and I can justify the reason they are ordering that test (and therefore spending that money)

You mentioned trouble with sleep. Now, few people know this and I know through my research but UP TO 1/3 of Autistic people DO NOT produce melatonin, the sleep hormone. I am one of these people. Therefore, I have been on 4mg of Prolonged Release melatonin for years.

I'm going to private message you if that's okay.

May 30, 2016 12:22 AM

Dear TireinpainNsane,
I don't doubt the research and fixation of what ever it is that a person hyperfocuses on. I have seen the challenges and problems that it causes, increasing the frustration. I have only in the past three years have really opened my heart, sharpened my listening skills and am open to why people do things they do. My upbringing was very controlled and powered by a very ignorant limited father. I have to say that for my daughter the tics come and go and can change. As you are aware there are many different types of doctors or jobs that work with medications. So keep on following your dream, it may change a bit at times, that's normal, it maybe helping to fine tune your specialty. Depression and anxiety are very common to happen with people who are ASD.
Self harm is a very tough thing to treat but it is possible, rebound can happen, it may happen. Just means that it time to reevaluate what going on in your life at that time. Maybe get extra support at this time. Tomorrow is always a new day and can hold new possibilities. My daughter did self harm and she believed that as much as Ritalin could help her focus on her school work, it then backfired because she would focus very intensely on harming herself. She is now off of Ritalin. The suicidal thoughts is another one that needs to be worked out. For me under any type of stress this can happen. It becomes so quick that I will not know what the trigger was. I am told for me in my situation is could very much be a coping mechanism that has grown through the the years.

I hope you have someone that you talk to about your suicidal thoughts. A perfusion all who you trust. This really needs to be dealt with. There are help lines where I live and now peer support groups for teens when you need to talk to someone at anytime of the day. I found it nice to go to these groups adult version, because I could say exactly what I was thinking and I was not alone and would find others with similar thoughts and situations. I felt normal. Suicide is permanent. Studying medicine and becoming a doctor is a future. You have lots to teach us and the world.
Are you sleeping at all? Have you every slept? Maybe it's time to talk to your naturalpath or ASD Doctor about the melatonin amount. These two may give you a different thought about the amount than a regular doctor or regular pharmacist.
I am working on a project dealing with mental health and a Crisis Card. I think the crisis card is good. One side is crisis emergency numbers the other side has a place where you put a name of someone who you will call if you need support. Their phone number. Then a name of a person who you can call to talk to and to remember to talk to them when you need help.
Take care. Beets.

May 30, 2016 1:43 AM

I really really do feel for you that's awful!! Be carwful with words they can be twisted ask to have all appointments or meetings recorded. Because you cannot process the information in the same way so at least nobody can get away with manipulating truth. Make sure you write notes in appointments. Be honest at the time of meeting with them if they say something you feel is,incorrect. And get them to give you email of what was discussed this way no one can bend truth. Or email this over to them whats above. Get yourself a support worker whome can spend time getting to know you who you trust can be able to help explain your corner for you and on behalf and with you at any meeting. I hope this is helpful. Your not alone. We have all had the same experience of doctors nit listening properly and then spouting off on completely the wrong thing twisting words. Write up a report and medical history for yourself in ur perspective and send to all,relevant professionals at least,that way,you can,get,across what you feel u need to. Do it in a doctor report style but in your own words. Good luck i hope you get,the help u need. Its nit easy,being able bodied and functioning let alone poor health or learning difficulties. I really do hope you,get,the supprt u need.,sorry for my,grammar.,silly smart phones!!! Big hug stranger

May 30, 2016 6:33 AM

Dear Reecebrowme1 and TiredinpaininNinsane are you the same person. Sorry if if a have mistaken some something here. I am confused!

May 30, 2016 12:13 PM

@Beets, I'm Pretty sure it is the same person. Anyone can see if they have Spinal Stenosis on their MRI's when you look at the cross sections taken. If you're not qualified in radiology or spinal/Orthopaedic Specialist(any Doctor for that matter) I'd leave the diagnosing to the specialists!!! 😊

Jun 01, 2016 2:24 AM

Hi Beets,
Yes we are the sane person. I got my name changed but the name change only applied to new posts.

I haven't got a formal qualification l but u have had some training. I will ask my docs what they think but I do also want a copy of my MRI anyway☺

Jun 01, 2016 2:27 AM

Thank you Beets for your advice. I have High Functioning ASD/Aspergers so I will look into some of the ideas you mentioned.

Thanks Plasticlg6, I don't want a support worker but I do wrote notes in appointments and I think recording appointments is a great idea

Jun 01, 2016 4:14 AM

You're always entitled to your records, so it's good to ask. But remember you're only 17, we do tend to be experts in how we try to manage our symptoms because it's our lives, as much as we get cross, frustrated with medical professionals, they are professionals. But they only know how to treat the diagnosis, they will never understand how it feels unless they are in the same situation. I think a lot of the time we get caught up on what doctors say because we can't get out of our situation, they can only see it from a medical perspective and what are the best options. But most times than not they are doing what they think is the right thing for us.

Jun 01, 2016 7:08 AM

The problem is, I've been treated at several hospitals and for every hospital/clinic it is Β£50 (around $73-$75) and I don't have the kinda money it would cost to get all of my records because it would cost upwards of Β£500 ($723-$730).

Jun 01, 2016 7:59 AM

You're entitled to printed copies of Mri reports and things and no cost. You or Your parent/s would normally get a copy of any letter sent to doctors when you see other doctors,consultants and they are reporting back to your GP.

Jun 01, 2016 12:51 PM

^ in the UK you have to pay a Β£50 admin fee per hospital if you need your records (with the exception of when letters are originally sent out and in some cases e.g. my MRI report, they arent)

Jun 01, 2016 4:49 PM

I live in the uk, I've never had to pay anything just to request a copy of a report!!

Jun 01, 2016 5:40 PM

Have you ever requested you entire medical record from a GP or hospital? Did you still not have to pay for that?
Also my GP can't give me all of my reports and scans as he doesn't have copies of the scans etc.
Thanks for all of this help everyone

Jun 01, 2016 7:32 PM

I use to work in medical records. And it is generally provided at a cost, but it's up to the provider to charge a fee or not. I believe the usual rate starts at $0.79-0.99 per page for the first 25-50 pages. The more you get the lower the price drops. Psychiatrists are not required to give records if they feel the patient could possibly suffer emotionally &/or psychiatrically. But you do have the right to ask. πŸ™‚πŸ’•πŸ™πŸŒΌ

Jun 02, 2016 12:02 AM

I don't need to see my entire medical records,serves no purpose, I can't turn the pages... I'm quadriplegic πŸ˜‚πŸ˜‚πŸ˜‚ . Seriously, no, I've never needed them, as I've always gotten my copy of any report from MRI's, Whatever the appointment. Flappys has a good point above.

Jun 02, 2016 12:05 AM

Ps. Yep I'm pretty sure I live in the UK.... Cold, Wet all the time,grey! And I live in the south!!😊

Jun 04, 2016 12:47 PM

Thank you both of you. I will see what I can do with them

Jun 04, 2016 1:52 PM

What type of pain have you been experiencing with your back issues?

Jun 11, 2016 11:15 AM

How have things been, any news about getting medical reports?

Jun 11, 2016 12:13 PM

Many times you can get out of paying by stating that you are moving and the records are for continuation of care.

Jun 11, 2016 12:25 PM

Definitely, that's a great idea. Just this week I asked for copies of my MRI reports as I had miss-placed them. They were ready for collection a couple hours later!!

Jun 11, 2016 12:34 PM

The only person that can manage your pain is you. Noone else, the only problem its difficult to do. Its not about the cause its about managing the symptoms here and now. Please be careful with data, eg naming people. You could get in serious trouble. My advise would be find and focus on nice things that you like and like to do. Grabbing those moments by the horns. Good good luck fella

Jun 11, 2016 9:04 PM

Another good point about sharing in public Dr's names and so on...

Jul 02, 2016 7:50 PM

Fucked up I hope things get better for you

Jul 08, 2016 12:55 AM

@reecebrowne1. I am so sorry you are going through this. Have you thought about coming to the Mayo Clinic in the U.S? They were the only ones who gave me a real answer to my chronic pain which is RSD/fibromyalgia. There are no real tests for these besides an EMG or MRI. Wow, I thought that I wasn't being validated. My heart goes out to you

Jul 17, 2016 3:48 PM

@Leelee43 unfortunately, I don't have the money to fly to the US, yet alone get medical treatment there. I'm under a new pain clinic now and they seem good but I've only seen the doc once. I've had 3 MRIs within the period of a few weeks over 2 years ago and am supposed to have one again soon.

Thanks for the suggestion
Gentle Hugs

Jul 17, 2016 9:55 PM

How is this new pain Clinic going for you Reece, have they been helpful?

Jul 28, 2016 12:55 PM

I am SO sorry!! That doctor does NOT understand ASD or chronic pain. RUN from her as quickly as possible! File a complaint as well with her licensing board (that is the most detrimental to doctors) with your corrections of her "diagnosis" and what happened during the visit. *She* has the fixed opinion and she should treat chronic pain patients! I hope you can get a new doctor soon!!

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