CT scan - some thickening of proximal duodenum?

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No Kimberly. Her bloods are always really good though, so not too worried about that, but WHERE is it coming from!?!

Her next appointment isn't too far away, so will see what he thinks, I am guessing it will be shrugged of as 'just another one of those things'! But whatever he said about her being sensitive to pain and having a sensitive stomach, there is no denying this symptom!
 
Worth noting that if there is a lot of blood in the stool then the calprotectin test is less accurate. So if you can get one with less blood contaminating it, it would be better.
 
Niks said:
I am waiting until I get paid, then ordering the test (Friday). I have asked Jaime to e-mail GI. She won't! She has the picture on her 'phone, so I can't do it. Plus the GI at the last appointment asked me not to e-mail him and he would rather hear from Jaime herself! Great huh.

She is obviously worried about it otherwise she wouldn't have told me and taken the picture in the first place.
Click to expand...

Great cop out on your GI's part. Probably knows a teenage girl isn't going to be e-mailing her doctor anyway. Disgraceful attitude.

I would forgo his 'rule' about emailing and do it anyway. Even if you don't get the picture, I'm sure a graphic and florid description might get their attention? If it doesn't then shame on them.

What is it with consultant GI's in the NHS?! Seriously?!
 
Niks,
Tell her to email them. A lot of blood needs to be checked out it and shouldn't wait. This may be the proof the doctor needs to say oh this is not a motility issue something else is going on.
 
Am working on it! She doesn't want me to mail, so maybe she will!!! When she gets home will have another go! Xx
 
I hope you convinced her to send the pic Niks! I don't know what they think is causing her to vomit repeatedly but they can't deny obvious bleeding needs some more investigation!
 
Its also worth noting that ur daughter is a still classes as a vunerable adult and under british laws , wherever possible a responsible adult should accompany under 21's and represent them , so her GI saying she shud speak for herself only is well out of place xx
 
fosterschick said:
Its also worth noting that ur daughter is a still classes as a vunerable adult and under british laws , wherever possible a responsible adult should accompany under 21's and represent them , so her GI saying she shud speak for herself only is well out of place xx
Click to expand...

I didn't know this! Thank you!

She won't let me mail. As her appointment is next week I shall be using this as reasons why I should mail too. Her reason is 'well they don't care, so what's the point. They won't do anything. They'll just say it's another thing I have to live with'.

I shall be telling him this is what she thinks next week! :ymad:
 
My heart goes out to you.

It's great that fosterschick had the "legal ammunition" for you!!

Just a thought, if Jamie sent (or would send) the photo to your phone, then you could send it to the doctor.

Another thought, would it be possible for you to get a copy of her medical records and work via mail/e-mail with the Mayo-Clinic or something? I would imagine that one of their doctors would be able to "arm" you with some better questions and suggestions for your docs.

Here is the link to their international services: http://www.mayoclinic.org/international/

Here is the contact us link (scroll down for international contact info): http://www.mayoclinic.org/contact/

Good luck.
Cheryl
 
Niks said:
I didn't know this! Thank you!

She won't let me mail. As her appointment is next week I shall be using this as reasons why I should mail too. Her reason is 'well they don't care, so what's the point. They won't do anything. They'll just say it's another thing I have to live with'.

I shall be telling him this is what she thinks next week! :ymad:
Click to expand...

I've been there. How sad when a young girl is thinking like this. That nobody cares or wants to help. Unacceptable :(
 
Niks.... What I'm going to say I think is really gross - but it came to mind and I think to myself it is an "IN YOUR FACE" approach.... Please forgive!

I think J should have two buckets and for ONE week - anything coming "up" should go in one bucket and anything coming "down" should go in the other bucket and then show up at the GIs office and say THIS! THIS is what she is going through! THIS is what she's losing EVERY DAY! WHAT the heck is causing it?! We aren't leaving until you figure it out.

I ache for you gals... Praying for you...

Sorry...

(((hugs)))
 
Shell - I love your thinking!! She would never agree to it, but I might mention that this was suggested at her next appointment. Just to see his face!!! :lol: xx
 
Oh Niks I would pay money if you took Shell's idea.:lol2:

Also you would have to video tape the reaction of the doc.:ylol:
 
Niks

Maybe send a email of what you want to say to the doctor by email to Jamie and ask her for any corrections and to attach the photo and on forward to doctor.
 
And the nightmare life of Jamie daughter of Niks continues... I'm so sorry it goes on and on. I can't believe that the GI said not to write him. I was figuring now she was under his scopes and that they would be more attentive to you both. What a joke.

I like the idea of Mayo International. Let us know how that goes. Wait for a more normal stool if a bloody one interferes with the fecal cal test - you certainly don't want to pay all that money for an invalid test...
 
Ugh Niks! I don't know what to say except to say that my heart goes out to hun. I know and understand the fear and frustration you are feeling and hope more than anything that your dear girl soon has solid answers and lasting relief. :heart:

:hang:

Dusty. xxx
 
Havent been on for a while, and thought i would see how your daughter was doing, and so sad for you both that things are still not going well for her.

The FCP test my son has done at Addenbrookes, Cambridge, and have to admit in January when he had one done, after they kept saying all his bloods are ok, they did it and it was off the scale!! That bad!! They always do number readings and results take approx 10 days. Just add another done after 3rd infliximab and its 200, so alot better but still high, think its a case of time to get it reduced. Will just say that he bloods work always shows good results, but the stool sample, different story altogether!! After his initial high one in january, they redid all his scopes and mri/barium, the inflammation was horrendous, not sure why didnt show up in blood work!

Anyway, hope she can get the test done quickly and you both hopefully get some answers very soon.
 
Hi Niks I just wanted to say hi and I hope things get better soon for your daughter. My daughter has care under Oxford aswell as our local hospital.
I'm sorry I have no advice for what your daughter ( and family ) are going through but hope you get answers soon. Xx
 
Bubbly said:
The FCP test my son has done at Addenbrookes, Cambridge, and have to admit in January when he had one done, after they kept saying all his bloods are ok, they did it and it was off the scale!! That bad!! They always do number readings and results take approx 10 days. Just add another done after 3rd infliximab and its 200, so alot better but still high, think its a case of time to get it reduced. Will just say that he bloods work always shows good results, but the stool sample, different story altogether!! After his initial high one in january, they redid all his scopes and mri/barium, the inflammation was horrendous, not sure why didnt show up in blood work!
Click to expand...


I agree with Bubbly. When it comes to IBD, the bloods should not be the "standard" for determining treatment. Gus' blood work almost always look "fine." Even Gus' doctor says he doesn't fully trust the blood markers for inflammation, etc... We still do them, but they don't determine his treatment course.

The FCPs have been better, but also not 100% revealing. I think it comes down to obtaining biologic samples when the flare is at its peak. I don't know about the rest of you, but that's not as simple as it sounds around here.

:) Cheryl
 
Hoping for a miracle for Jaime and you Niks. It has been a long road for you both. Good thing she has you!!!:heart::award2:
 
Thanks everyone. Hopefully we'll work out what is going on with her sooner rather than later!! xx
 
Hi Niks,
Wanted to see how Jaime is doing. Did she email the doctor? Any luck with getting the fecal cal. test?
 
Hi Kim, thanks for checking on us! she wouldn't! We are going next week and will show him pictures etc. I will tell him why she wouldn't e-mail!

Ordering test today! Got paid, has been a long month! LOL xxx
 
Just stopping in to say hello and hoping you get some answers at the upcoming appt. I had a rough day yesterday but better today.:thumleft:
 
Just wanted to wish you luck for the appointment on 1 July. I will be away so will check in afterwards to see how things went!
 
Oh Niks...:ghug::ghug::ghug:

I hope so much that you both start getting answers. You must be worn out with worry and your girl just plum worn out! :heart:

Sending loads and loads and loads of luck and well wishes for the upcoming appointment and test!

Dusty. xxx
 
I'm thinking it may be about time for Niks and her daughter to emigrate somewhere else to get different docs and someone who isn't afraid of parents or in doing a full workup!!! Grrr!
 
Thanks ladies. Not holding out any real hope for appointment on Tuesday, but he has to agree that her symptoms are no longer dysmotility!!! We'll see if he has a plan. xx
 
At minimum, you can go in armed with questions and demand he answer them...like:
1) If not dysmotitilty, then what else has these symptoms?
2) Is he concerned about Jamie's continued symptoms?
3) Are there any other doctors/clinics who see and treat a larger number of these difficult cases? Can he refer you there of can he consult with them?

Gus said he would ask the doctor
4) What other tests can we do? If the MRE and scopes haven't given us enough information, what about a pill-camera study?

(Niks, it may sound crazy, but Gus has done two pill-camera studies. Both cameras got stuck in his strictures. One had to be surgically removed. HOWEVER, if it weren't for the cameras getting stuck, we would have never found-out how severe his strictures were and/or where they were located. And trust me, there were dozens of scopes, biopsies, blood tests, stool tests and MRI/MREs...the magic "bullet" (no pun intended) was the pill-camera).

Anyone else able to add to Niks question list?

Best of luck to you for Tuesday.
Cheryl
 
Thanks Cheryl!

I have a list of questions. Although I find that Doctors have an amazing ability to answer questions without actually answering questions! Her D is worse though, I do think that they need to do some more investigations!!

xx
 
I say handcuff yourself and Jaime to the exam table and say you're not leaving until they provide a diagnosis and treatment plan.
 
Niks, just lurking and wanted to let you know ai am supporting you. Sorry you are still doing this. What I don't get if he thinks it is a motility issue why does he think she should just live with this. I mean COME ON! :stinks:
 
Mary, he has changed his mind about dysmotility! The last time she was called in her bowels had been moving. So we have done a complete circle and back where she started this time last year!!

The problem is J actually is feeling better. Nowhere near as much vomiting, bowels now moving. Still has pain and bleeding, but compared to how she has been, she is better.

I just hope she doesn't play it down tomorrow. She has already told me not to get cross!!

When he told me that she was sensitive to pain in that area, I asked him if that accounted for her passing out. She turned round and said it was only a couple of times. I don't know whether she just blanks these things out, but ambulances have been called at least 6 times, that I can remember, when this has happened and there have been numerous other times!! :angry-banghead:
 
I did pan through this thread. I cannot believe I missed that post of yours just down the page telling us she didn't have dismotility:ybatty:. I am really glad things are moving again. As that can be so scary. Sorry she is playing down her symptoms. She seems fed up with the doc and like she has lost her faith in him:(. Is there anyone else she can see to maybe help her feel like someone can help, again? I know there is mention of Mayo international. What are your options at this point? Please tell me you do have some... Sigh. Tough times momma! You hang in there!
 
Niks,

Gus always down plays the pain or events that occur between doctor visits too. That is one reason they need us to attend their appointments.

Here's a little trick I learned to sway to doctor toward my recollection vs Gus'...keep notes on a pocket calendar or notebook (if you haven't been doing it, just get a notebook and write it all down as if you had kept track all along). Ultimately, what matters is that the ambulance was called six times, not the exact dates of the calls.

When Gus' Crohn's is very active, I'll even send weekly updates by e-mail. The e-mails are included in his medical record...hard to the doctor to ignore info when he is kept in the loop on a weekly basis.

Best of luck to you tomorrow.
Cheryl
 
Before Sarah was dx when the dr were saying it was gastro, Sarah would say why go to the dr. She would always play down her symptoms. Its like when they feeling better they don't want to reminded how bad it was.

Remind Jamie the only way she will be answers is by explaining how bad her symptoms still are.

Something like my pain is less, but I am still in pain everyday.
I am bleeding? How do we make stop?
I shouldn't have to live this?
If you can't help? Who can?

Sarah also thinks I should stop going on this site because I find out about new blood tests and that the dr orders for my piece of mind.
 
All I can say is AAARRRRGGGGHHHHHH!!!!

Traffic was horrific this morning. We got there 15 mins late, it took us over 2 hours to do a 45 min journey. When we got there was told the appointment had been rescheduled! WHAT!

She said that Jaime could stay and be 'slotted' in somewhere, but she is in a lot of pain today and also bleeding, needing to wear a pad to stop it going through to her clothes. She did not want to wait hours and see someone who she had never seen before and start her story all over again. So we came home on the understanding that we e-mail and send the photos straight away!

We have. Now we'll see what happens. SO CROSS!!! :ymad: I used an annual leave day for this appointment!!!
 
So sorry Niks! That happened to my sister too who had major foot surgery and has to be driven to the city. She gets there and they change her appt. because of some emergency. She had a bone taken out of her foot. It's a long story. But I understand your pain and emotional anguish for Jaime!:hug:It is ridiculous this happens. They should have to call you! Pls keep us posted on what they say when they see the pictures. Hugs sweetie!:ghug:
 
That almost happened to Jaedyn and her daddy last visit too. They were late due to road construction and the nurse was going to reschedule them. I told her that they had already driven 3 hours and that we live 3 hours away in good road conditions, and could they swap people around to make it work. She finally talked to the doctor and got them in late... I know it is inconvenient for the doctors, but LIFE HAPPENS!
 
No Carol! Her appointment had been rescheduled BEFORE we even got there! We don't know when it is, but we should have received a letter to tell us it had been changed!! We didn't .

The Doctor she has been seeing wasn't in today, so she didn't want to have to go through the whole lot again with someone else, who we know wouldn't do anything until he is back.

I guess that's why she hasn't received a reply from e-mail too.

xx
 
I'll second that Arrrrrrgh!

Traffic and delays happen. We also have a two hour drive to see Gus' doc. We usually allow plenty of travel time, especially during peak traffic times. Even so, we've been more than 15 minutes late plenty of times over the years. Our solution...keep the docs direct access phone handy and call if it looks like we will be late.

I completely understand Jamie's feelings...however, she should have stayed. With those symptoms, the nurse should have found a way to have Jamie's doctor see HER as soon as possible. Malpractice leaps to mind!!!

Any luck with contacting the Mayo Clinic?

Cheryl
 
Groan!!!! Niks!!! I can't imagine your frustration! If it's not one thing it's always another!!
 
Oh Niks I am so sorry to hear what happened! I am sorry you and Jamie continue to have to battle the medical system. I only hope the Mayo clinic is willing to help.
 
Niks,

Have you considered reaching out to one of your news outlets and allowing them to follow Jamie's case for a story?

I'm just guessing, but I imagine that there are media sources that highlight medical stories as a check and balance for the United Health Care System...exposing areas that need better access, treatment procedures, guidelines...etc...

Jamie has been battling this for so long without a good treatment plan, a reporter following her case for a few more months couldn't hurt.

Hugs to you!
Cheryl
 
Thanks everyone!

I haven't heard back from Mayo Clinic, will leave it a few more days and then try again.

The appointment wasn't there, they had changed it already, but not let us know, so being a little late made no difference. From what we could gather her Doctor was not even in yesterday, maybe on leave, not sure but going through everything with yet another Doctor was not going to happen in Jaime's mind.

Going to the media! OMG you should have seen Jaime's face! LOL, there is no way in this World she would do that. She hates any negative attention and plays down to everyone what is actually happening to her. I'm afraid she gets that from me. :eek2:
 
Just wanted to send you both a hug.

You have both having a horrible time, which is an understatement i think, what happened yesterday is truly shocking, shouldnt happen at all. I would be on the phone to the clinic demanding an appointment asap, its not fair on you and your daughter to be left hanging, waiting for them.

Really hope you hear back from them soon, can understand her not wanting to go the media route, my son would be the same, hates being seen as different!

Good luck x
 
J has just received this!

Dear Jaime

I passed your letter to Dr Bailey and he has recommended that you do not have a faecal calprotectin, especially if you have to pay for it. He has however booked you an appointment for 23rd July 2013 at 4.15 and you can discuss matters with him then.

Kind regards

Now WHY would he not want this test done?? Any ideas? I find it very odd. Maybe he will get test done himself but why doesn't she just say this? No mention, or apology for the mess up with appointment!


I actually want to sent the link to this thread, so that he can read for himself what everyone thinks! I don't expect he'd care though!

:mad2:
 
Last edited:
Niks said:
J has just received this!

Dear Jaime

I passed your letter to Dr Bailey and he has recommended that you do not have a faecal calprotectin, especially if you have to pay for it. He has however booked you an appointment for 23rd July 2013 at 4.15 and you can discuss matters with him then.

Kind regards

Now WHY would he not want this test done?? Any ideas? I find it very odd. Maybe he will get test done himself but why doesn't she just say this? No mention, or apology for the mess up with appointment!


I actually want to sent the link to this thread, so that he can read for himself what everyone thinks! I don't expect he'd care though!

:mad2:
Click to expand...

That is so bizarre. Perhaps he is scared it will come back with something and you will be asking the question why he didn't order the test himself?

Kind of like my GI who blamed 3 high FCP's on being false positives - he was having to eat his words and didn't like it.

It's not like it's a test with side effects, other than it being a bit icky. Haha.
 
I would absolutely disregard that email and have the Fecal Calprotectin done. There is no down side, no invasiveness, no side effects. I would ask for the reason he suggests not having it done, in writing, since you do have scientific studies backing up the use of it, not as a diagnostic tool but to indicate what further testing should be done.
 
Dear Dr Bailey,

Really, the best you can do after you cancel Jamie's appt is July 23rd? Do you realize what you are putting this young lady through? It seems that you either, A. Are not aware of the severity of her symptoms, or B. You don't really care. Could you please refer her to another doctor who cares?

Sincerely,
Carol in Alaska and a large international group of parents of kids with IBD
 
:rof::rof::rof:

I know this is serious! But did make me chuckle Carol!

Perhaps I should forward the link after all!!!!
 
Hi niks
OMG I can't belive how these doctors
Can mess you around
If I was you I'd do the test like clash said
And yes send him the link of Jamie's
Story on here migh help give the doctor some
Knowledge and remind what Jamie has actually
Been though and is going though.
Arrrrrghhh makes me mad.
 
I have e-mailed one of the Secretaries again, with her symptoms today (particularly bad :( )

I have also quoted you Clash on the FC test, and asked for an explanation.

Carol - really wanted to just mail him your letter, but just not that brave!!

Told them that although Dr B does not want me to mail him, as Jaime isn't then I will advocate for her.. Let's see what comes back. I am guessing they will reply to Jaime and she will be mad at me for mailing them, but what do you do!?
 
I would do the test, but only give him a copy of the results if the results are high.

I have had the test done twice, I have a dx of ibs both times the result has been 19. Although the second test didnot show inflammation it listed a whole things that should be rules out.
 
I'm sorry here symptoms are worse today. I feel so frustrated for you and J and all you have had to endure!! I hope you get some much needed answers soon, sending hugs your way!
 
You all realize that this thread is almost 1000 posts... maybe not quite to the point, but it definitely tells the story! I doubt any doctor would read it.
 
Niks,
So sorry symptoms are worse today! I agre with the others do the FC test. I also agree that he is being a pompous you know what and does not want you proving him wrong by having this test done on the outside!
 
:ghug:Niks, I would go ahead with it too. I mean you can make payments after all. I don't understand though why the Dr. didn't order it! What harm could it do? Is he afraid of being wrong? That's what I think. Next then hopefully pillcam!!!
 
Told them that although Dr B does not want me to mail him, as Jaime isn't then I will advocate for her.. Let's see what comes back. I am guessing they will reply to Jaime and she will be mad at me for mailing them, but what do you do!?


You continue to do what you are doing until Jamie and/or Dr. Bailey "get it."
 
I agree with everyone else. Definitely get the test done, even is you are paying atleast you'll know. Absolutely disgusting behaviour regarding the appt, they must have your daughters phone number to have called and told her before travelling all that way. Your poor daughter must have no faith what so ever in our health services, you could write a book. So sorry you haven't gotten any answers yet. :-(((
 
Bloody hell Niks. :ghug:

Sorry I am late to this hun. :(

The appointment: What a crock of shit! They inform you by letter that your appointment is being rescheduled?! What fecking century are they in! Not to mention what if the new date doesn't suit? That is what a phone is for and a discussion as to what date and time is best.
Grrrrrrrrrrrrr.

The FC: I agree with all, do it independently. Having similarish health systems I don't see that your prices would be grossly different to ours. I don't recall what they are here but Catherine will know.

Good luck!

Thinking of you! :heart:
Dusty. xxx
 
FC costs vary between labs, my cheapest lab is $40, i have also had quotes of $80. Other members here from Australia have paid up to $120.
 
Omg niks wat a lot u have had to deal with , and now scare tactics from doctors , have t test done for ur own peace of mind , they have done same to me my FC tests were nagative with NHS yet 3 postives ( including one done at t same time ) privatly , jusy how poorley do we have to b to get diagnosed ! Xx I also got told not to complain about my consultant as it would have an effect on my healthcare ! Awful , wishing u every luck with tests and big hugs to u both x
 
Test ordered!!! If comes back negative all I have lost is £72!!

We'll see huh! Xx
 
DustyKat said:
Bloody hell Niks. :ghug:

Sorry I am late to this hun. :(

The appointment: What a crock of shit! They inform you by letter that your appointment is being rescheduled?! What fecking century are they in! Not to mention what if the new date doesn't suit? That is what a phone is for and a discussion as to what date and time is best.
Grrrrrrrrrrrrr.

The FC: I agree with all, do it independently. Having similarish health systems I don't see that your prices would be grossly different to ours. I don't recall what they are here but Catherine will know.

Good luck!

Thinking of you! :heart:
Dusty. xxx
Click to expand...

The NHS don't care if you work or have other commitments. Sadly the attitude is that they are doing you a favour by seeing you! My rheumatology appointments are a 9 month wait. If you have to cancel, you wait again. It's shocking.
 
lsgs said:
The NHS don't care if you work or have other commitments. Sadly the attitude is that they are doing you a favour by seeing you! My rheumatology appointments are a 9 month wait. If you have to cancel, you wait again. It's shocking.
Click to expand...

:stinks:THAT SUCKS STINKY ROTTEN EGGS....as Gus would say!

No matter if a physician is in a private practice, PPO, HMO or NHS, their OATH (paraphrased) is to "...use those dietary regimens which will benefit my patients according to my greatest ability and judgement, and I will do no harm or injustice to them. I will not give a lethal drug to anyone. In purity and according to divine law will I carry out my life and my art. Into whatever homes I go, I will enter them for the benefit of the sick..."

Your daughter is sick, really sick. Any doctor she comes into contact with should be moving heaven and earth to find the cause and develop a plan for a solution. If Jamie were his daughter, he would NEVER allow her to SUFFER so!

Even within the NHS, that doctor (someone who is willing to meet the challenge head-on and not give-up on it) has to be in there somewhere. The trick is to find that one doctor who cares more about the patient than the "rules of the system." Can you do an internet search for the top IBD docs in the nation?

:hug: Cheryl
 
Perhaps this may help...

This website lists doctors and offers a rating. It isn't a complete list of doctors and I can't vouch for the rating as both the doctors listed and their ratings are based on whoever has posted the rating but it is a starting point. Out of curiosity, when I looked up my own GP and Stephen's GI, the ratings/descriptions seemed fairly accurate.

The link below is directly to GIs in the UK, however, if you go to the main page (www.ratemds.com), you can set your own parameters.

http://www.ratemds.com/filecache/se...er=&dcity=&sid=&dspecialty=Gastroenterologist

:)
 
lsgs said:
The NHS don't care if you work or have other commitments. Sadly the attitude is that they are doing you a favour by seeing you! My rheumatology appointments are a 9 month wait. If you have to cancel, you wait again. It's shocking.
Click to expand...

Ugh! Sounds like a few pedestals need knocking down! :voodoo:

Okay, so the FC is at the top end of what Catherine has quoted, figures! :yrolleyes: But you can't put a price on peace of mind. :)

Good luck to you both Niks! :heart:

Dusty. xxx
 
thanks everyone, I have some research to do!! The reason why I went to Oxford in the first place was because Swindon was just so bad and didn't believe her!

At least no one has been that bad. I do take faith in the fact that there are several people on here who have had to change GI's numerous times before finding a good one!! X
 
£72 in the big scheme of things is nothing! It was the only place in UK that did single tests. I guess mist companies sell to Doctors or clinics over here.

It will probably get more competitive if more companies do the test!! X
 
I agree Niks. It is a drop in the ocean compared to the information it will provide you with.

Dusty. xxx
 
Niks, Rowan changed GIs within the hospital, then we switched hospitals all together and had two more GI changes before we found one we liked. It is a process for many. I wish you luck in the search.

This was in 5 months time. So a bit crazy.
 
Okay so Calprotectin test sent off! I really don't expect anything to show, everything else comes back normal.

Jaime got a letter from Oxford today dated 13 June! Really! I know that mail takes a while but nearly a month??

His new diagnosis - 1. Coeliac disease
2. Constipation predominant irritable bowel syndrome with visceral hypersensitivity.. Hmmm. Since WHEN did you bleed with IBS and loose so much weight?

Anyone else think he's running out of ideas?

He never did reply to my last e-mail. Am really looking forward to what he has to say on 23rd!
 
I'm glad you got the test sent off.

In regards to his latest dx, I would title a page with each of the diagnoses at the top and list in detail each of her symptoms, under both dx titles, make copies. Then at the appointment, hand him and J a copy and ask that he go over his latest dx in relation to each of her symptoms and explain to you why each one fits with what he has diagnosed. If some don't fit ask what he plans to do to investigate the source of that symptom.
 
Have nothing to add beyond to say, still thinking about you and your girl.
Your NHS stories really are staggeringly bad. :(

Hope the Calproc gives you the evidence you need to push for answers.
As Catherine commented, if it's negative I wouldn't share the result as it might just give them another excuse to not look properly.
 
Niks,
I can't believe them at this point! What the heck is wrong with these doctors. I think Clashes idea was great. Also along with the diagnosis and her symptoms put a list of common symptoms of that disease versus her symptoms to show him this just doesn't add up.
 

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