[cad]

Hi All,
well I am still realing from the shock!!
And I a totally blaming myself for thinking and making something out of nothing.

Well first of all when I looked into his face i got this weird vibe.

The first thing he said to me was "Well I don't know why you're here"

Then the silly thing was instead of writing a list of the symtoms that I thought were just neurological, after all I'm not a doctor. I just took an updated version of the list I took to tthe rheumy as it has all my meds and everything and I knew I would forget things. shouldn't have done this cause it ctually is quite long.

I was in such shock as to the way the consulataion had started that I was fumbling over my words trying to explaun that I had described some neurologicak symtoms to my endocrinolgist and he had referred me to investigate whether there might be some other problem in particular hashimotos encephalopathy or other atoimmune related cause.
I had has very high levels of anti tpo antibodies which can cause the encephalopathy. 30 i enough to diagnose, 40 is high, mine was 446. So this was probably not such an unrealistic possibilty.

I was just in such a state, i was really at prepared for this atall. I was fumbling over all my words and then the only question he asked me was what was the symptom that was bithering me the most, i said headache, severe eye pain, blurred vision and then he stopped me and said " That's enough to be going on with"

He looked at my brian scan and showed me. I told him I knew it had appeared normal, but did not mention that quite often H E amd other inflammation does not show up on MRI an H E is usually diagnosed using a spinal tap.

Anyone he checked my reflexes and did couple of other tests, I was only in there 15 mins.

AND THEN this is the worst bit, he sat me down and said that the cause of my headache and eyepain was my pain relief!

He then went on to tell me that this was good because atleast I could resolve the problem but I needed to atop the tramadol and the est way to do it was just to stp it dead! He said then people think I 'm crazy for suggetsting it acause the symtomps get worse because people experience withdrawls.

I did then pipe and say taht if I were to stop the amount of painkillers that I am on then I would escpect evere side effecets, to the point where I would actually never consider doing such a thing!!!

He recommended that I have different drugs that I take for a minth at a atime to avoid side effects. And that was it!!!!

It is obvious that he had decided before i even got in there that most of symtoms didn't materr because wht ever was wrong with me was a side effect of other drugs I was taking. Or in articular narcotic pain relief!!

I am not saying that errhaps the eadaches aren't realted to the tramadol, thay may well be, but what about everythings else.

Oh I', so sorry for ranting everyone I just came out sobbing and feeling awful.

Maybe its is just me making something out of nothing.!!!

I do think though that he really should have undergine an assessment of symtoms, I am very lucky so far cause I really have not had to deal with a dr like this before, I always expect tehm to be bad, but actually they have all turned out to be really ok, Until now.

Take Care All

Cassie

 

[sam101360]

Cassie...

GRRRR I am so angry for you! I would call my GP or referring DR and make sure that they knew what had happened. I would also ask for a second opinion...

I take 300mg of Tremadol a day plus Vicodin 750's as needed at night for extra pain. I do not have headaches or any other symptoms...although I know we all react differently to meds...I don't even think headached are a common side effect of the medication.

I take the tremadol because it is not a narcotic, and is not addictive (although it can be habit forming), I was told that no matter what I was NEVER to stop taking it all at once, with such high doses for extended periods it's necessary to wean off the medication to avoid re-bound pain.

I would be infuriated if I were you...FIGHT the B$%^*&d with all the resources you have...especially with high blood numbers to support the suspicions.

Good Luck - Stephanie

 

[Chelsea2]

I am sorry to hear of your awful experience. I too have had similar whereby GPs are not listening to what I'm saying and refusing to refer me to neuro's etc. I ended up paying to see the President of the British Orthopaedics Assocation who like your neuro is dead against pain killers. It doesn't cure the symptoms, just disguises them and also told me to stop them dead! I asked if I should come off them gradually (like you, was dead concerned about going 'cold turkey'), and he said no, just stop. I was taking 8 x 50mg Tramadol per day, 8 x 8/500mg co-codomol per day and 15mg diazepam per day. However, he did correctly diagnose me with Spina Bifida when everyone else just told me 'there was a lot wrong with me but couldn't figure out what'. So I took his advice and it was the best thing I did. I did have cortisone injections in the hip and knee and as a result, I no longer feel like a zombie and do feel alive again. I went 9 months with hardly ever leaving the house and couldn't concentrate. It didn't help my pain much taking those drugs but was too scared to come off them as I thought if I did the pain would be so much worse. It wasn't. It resulted in me having sleepless nights for a few days which is never much fun but some times you've got to try what works for you.

You have nothing to lose but I do think he could have been a bit more sensitive and spent a bit more time explaining in detail his reasons for suggesting such a thing. I do know how you feel but from my experience, just give it a go. You're not 'losing it' although I know you're feeling down at the moment.

Hope this helps
Chelsea

Crohn's / Osteoarthritis / Spina Bifida

 

[Maia]

It does sound awful, a horrid appointment. The worst is not being taken seriously... and not wanting to order further investigations to rule out more severe possibilities.

I have to say that it does seem that practically every medication out there lists headache as a possible side effect - and many neuros will believe that headaches are in large part due to "rebound" headaches. But you have a set of symptoms that seem to go beyond that and lab results that warrant further investigation into at least one other cause!

Do you know if there is treatment that can help if it is H.E.?

I do hope you go see another neuro, hopefully more expert, and take a new list of the targeted symptoms/lab results/diagnoses that make you and your other doctors want a specialist to consider everything.

Good luck - hopefully you'll be able to post about a more positive doctor visit very soon.

 

[cad]

Hi All,
many thanks for the moral supprt.

I take 300-400mg Tramadol per day too.
I am definately going to ohne my gp tommorrow, he will be utterly gobsmacked I'm sure and quite disgusted. He is usully quite open about comenting on the failing of other doctors i've seen and is very supportive.

I am still quite shocked about the whole thing. I am really asking for more things to go wrong with me but I atleast thought he would do athorough assessment bearing in mind I've been diabetic for 29 yrs and my other problems. Diabetes alone can cause all sorts of neuro problems in the long term.

I willl definately make my feelings known about him.!!!

Maia, the treatment for HE would be exactly the same as what I am having now, steroids and Azathioprine, I am starting the aza shortly. It is more about discovering how far the spread of this awful autoimmune beast is reaching and whether it is that causing the problems, or is it inflammation or is it just something that is related to a long term side effect of the diabetes That is more like the angle I had on it!

Thanks again

Take Care

Cassie

 

[ALWIN]

Hello Cassie

I had a similar appointment a long time ago before I was diagnosed. I was not told medication was at fault, but my age ... I won't forget it becasue this person could have been responsible for my putting up with feeling ill for the rest of my life.

It is unforgivable behaviour.

The neuro in question did not let me get my words out either. He treated me like a fool.

I went to somebody else and was properly checked and tested over a period of time eventually ending up with a diagnosis of 3 related autoimmune conditions.

I am telling you this because it is clear that unfortunately some specialists are either to lazy to check people out thoroughly, or too convinced of their own supreme powers of ESP they no longer feel they need to carry out tests. As a result they do not come up with any results.

Don't see him again. Make sure you get referred to somebody still prepared to work for their wage whilst treating people with respect.

Since you hav emanaged various conditions for a long time you should have been given at least enough respect to explain what felt different and why you were concerned.

When you have waited and prepared for an appointment it is very difficult to launch into your symptoms after somebody tells you they don't know why you are there. Of course they don't know why you are there - you have not told them yet. The trick is to ask what the matter is. He must be a right thickie must he not?

 

[LolaLola]

Hello Cassie,
When you wait for an appointment you can't help but build your hopes up.
You are a long term patient and clearly intelligent, you deserve respect from the Medics.

What is being suggested sounds pretty drastic to me. I am afraid my brain is not good tonight and I can't think what your home circumstances are. I would bet though that you have a certain amount of responsibilities, and cannot afford to risk making yourself sicker.
Does your Hospital have a good Patient Advocacy Service? ( Usually called PALS), they are often very good. Sometimes, they can smoothe the way to another opinion or a Review appointment without the need for a formal complaint.

Of course you are really upset right now. Take a few days to regroup, then try to get the treatment you deserve!
x Lola

 

[Clare.T]

Hi Cassie
I am so sorry you have had this awful experience ((( Cassie))) It seems everybody has to go through this sort of thing at least once in their lupus life I am glad you have a good GP. I am not an expert but I feel sure that Tramadol ( USA Ultram) should not be stopped suddenly as it is physiologically addictive. This has got to be bad advice ! Even if it is true that your headaches etc are due to it, then you need help to find other medicines for these symptoms.

I have to go to bed now, but it's a good time to trot out an old joke and apologies if you have already heard it.

Q. What is the difference between god and a neurologist?

A. God does not think he is a neurologist

It'll be interesting to hear what your GP has to say about this twerp


Many caring Hugs
Clare

 

[keebler]

(((Cassie)))

I sat reading your post with my mouth hanging wide open thinking what a horrible doctor. Who does he think he is to treat you like that?

Take care Cassie.
Love,
Lyn

 

[lin]

Oh cassie sack him :sad: go get another referal, i always say the patient knows when somethings not right

hang in there gilr hugs lin xxxxxxxxxxxxxxx

 

[Joandublin]

Dear Cassie

Im really sorry to hear about this dreadful appointment. That neuro sounds positively dangerous to your health. One of the most telling things he said is

people think I 'm crazy for suggetsting it...........

You got that one right mister.. I also bet that he hasnt got five children to look after while he goes cold turkey - one being under two years of age.

But thats not the worst of it. The fact that he did not do ANY real assessment on you, did not listen to you and, despite your presenting symptoms, GP referral and blood results, did nothing but suggest stopping your pain killers, is absolutely scandalous in my view

The best of luck with your GP today Cassie. If it eventually turns out that you do have neurological problems just picture yourself marching up to that neuro you met and asking him to explain his 'diagnosis' Actually picture him in a pair of tighty whiteys while you do it...

Chelsea, I find that appalling that the once President of the British Orthopaedic Association was 'dead against painkillers'. I would have thought that analgesic needs are crucial to address within the overall management of orthopaedics. My goodness I would hate to be under that doc for orthopaedic trauma, management or post operative care . Maybe he should have given you a piece of wood to chew between your teeth while he was at it. Im glad it worked out for you in the end and Im sure the cortiosone injections helped at the time.

The other thing that really worries me Cassie is the fact that he seemed to take no cognisance of the fact that you have Type 1 diabetes since the age of 2 :worried:. This type of diabetes is well known for causing neuropathy pain and one of the treatments for its symptoms is Tramadol. Anyway Im going off the subject a bit.

You are not making something out of nothing. This was a very poor consultation and its clear you need another opinion. Talk fervently to your GP about this and see if you can get another referral as soon as you can.

Let us know how you are
Luv n stuff
Joan:rose:

 

[cad]

Oh thanks so much everyone!!! Atleast you guys understand.

I did think that yes just having diabetes could indicate some kind of neuropathy, as I have had tingling, numbness, I have actually had heat patches on my skin which i am sure I contirbuted to a thread about a while back, I have awful difficulty swallowing, that lump feeling in the throat all the time, I also wondered if the eye pain could actually be a neuropathic thing. When I fisrt mentioned this to my endocrinologist, I had actually had what I am sure where auditory hallucintaions a few times. Obviously this is something that us diffiicult to say with certainty without thinking you are going absolutely ga ga!!!:hehe: These have actually not occured since though. They were mentioned in the referral letter from my endocrinolgist.

I have also have a family history of autoimmune disorders and 2 fatalities due to MS on my mums side.

I would have been happy atleast if he had investigated further and then found nothing it's just the total dismissal of everything. every other doctor I have ever seen has alsways asked about family history.

Oh well see what my gp say about the matter.

Thanks so much everyone. I am really sorry for all those too who have experiences like this especially those who have suffered on for rmany more years until diagnosis. Atleast I am undergoing treatment that should be working if this autoimmune related such as Hashimotos encephalopothy or related to inflammation. I am greatful for that.

I am also really glad for those who have successfully stopped taking tramadol and have noticed improvement in quality of life, I just know myself that I absolutely would never consisder stopping it dead and my gp would never let me anyway. He already told me if there comes a point in the future when there isn't such a need for it anymore then it would need to reduced gradually.

Thanks everyone

Take Care

Cassie

 

[x_claire_x]

god syndrome

Hiya Cassie.. get your strength back and then be very definite about wanting a second opinion.. or even a first opinion with the proper evidence/tests would be good!!!! Unfortunately whilst nursing I did meet some Consultants that thought they could reign supreme over their subjects without question.
Incredibly arrogant people; Well you know your body, so go with your gut instinct and persue another appointment with a human Consultant ...you are in tune with what your body is doing, he isn't. You could write or e mail the Consultant ahead of your appointment, that sometimes helps them peruse your symptoms before they see you and puts them in the picture.. hopefully if he/she is good they will actually read it! It also gives them a reference to prompt their questions/ test needed at the Consultation.
Best wishes , take care and you deserve better care from the health world!
XClaire

 

[Katharine]

Hi Cassie,

Like the others, I'm so sorry that you have had to go through this. I don't have much to add, I think it has all been said really.

He is most definitely a dangerous man, doctors are always going on about NOT stopping narcotic pain relief cold turkey.

I certainly hope you don't spare him when talking to your GP!!

Hugs for now :hug:

Katharine

 

[Douglas]

Howdy Cassie,
My Mother had an expression, "My God! I wade knee deep in idiots!"
You met one a lot taller than the norm.
It is well that you did not hit the jerk over the head with a comfortably hard object.
May things improve for you!
Douglas+

 

[Pink Pearl]

Hi Cassie,
I am very sorry that you had to suffer the idiocy of such an egotistical arrogant jerk!

Three years ago, I injured the tendon which operates the left thumb. The first ortho doc I saw thought he walked on water and kept his feet dry! My pulm doctor, when I relayed the events, said "oh, I see you found out what a jerk Dr ***** can be!" Well, so much for that jerk.......and I went back to a doctor I had seen years back. He did the surgery, have a superb result, and you would never imagine the damage that was done. Rack this one up to an idiot, and move on. We all have horror stories to share, and sad as it is, you will end up with a better result the next time around. You will not get caught off guard again.....

Take care of yourself. This disease does not play favorites on the ways it hits us.
Sally

 

[cad]

Hi All,
Thanks Sally and Douglas.

I spoke with my Gp yesterday and told him what had gone and the first things he said was and are you going to write to him?

What I said was that I am not sure at the moment, It has made me doubt myself a bit and wonder how much of effect that the Tramadol is having on me.

I told gp that the only way of really knowing and proving the neuro wrong is to reduce the Tramadol. He agreed with me that he would never stop it dead and said it would be a shame if I had to stop because its probably the only thing that is addressing the pain. I do also have days where I have to take oramorph as my pain is so bad and belive it or not some areas still break through. He said though atleast it would be definative proof if the neuro was right or wrong and then we could go back to him stating that his theory was worng and he would have to think again.

But the yesterday it was a sign from somewhere, my pain was absolutely awful, in my joints and muscles, I had the headache all up the back of neck and head. I know that this is not related to the Tramadol, this is realted to the spondilitis I have in my neck. Also the eye pain worsens when I ahev more joint and muscle pain and feel worse so I am convinced that, that is not Tramadol related either.

I am in a predicament because yesterday and to dau infact are a reminder to me that my disease ia not under control enough for me to reduce the pain relief. I am just hopinng that when I astart on Azathioprine, maybe it will help me reduce the pain meds.

Huuuuuhhhhh!!!

Thanks everyone

Take Care

Cassie

 

[pollianna]

Cassie, am so sorry you have had to go throught this too. I was sent to a Neuro by my GP who told me that my symptoms were "all in my head". This same GP failed find the cause of massive bruising on the inside of my legs ( looked like I had been kicked by a horse), failed to deal with my exhauston and massive bowel pain, then predjudiced the very refferal he made. I was sent for an endoscopy, told by the specialist there to 'get myself to a phsychiatrist"

I had a car crash, one orthopeadic consultand was worried I had intermittent claudication, told me I would be 70% disabled for life. the other one (reffered by this GP) told me my symptoms made no medical sense. The GP thought it was MS after I had a massive physical breakdown but when the MRI was clear told me I was mental:lol:...The Neuro diagnosed Fibromyalgia and CFS, but couldn't explain why I couldn't walk, totally missed the Lupus. My GP then told me "yes you have CFS but it's Phsychological" and that Fibromyalgia didn't exsist at all. He then sent me to a shrink who told me there was nothing he could do for me as he wasn't a Rheumatologist.
Confused yet?

It took me 10 long years to finally get myself to the Lupus unit. I had to beg the GP ( new one ) to let me see a Rheumi and used some slight of hand lol to get to St Tommy's. Only just this April I was told again when I lost the use of my leg. "There is no hint of autoimmune response in your blood" What a crock...Dr D'Cruz found it with one set of bloods

I hope that my experience helps you to realise that we know Cassie!!. The body has an inner knowing and you must hold on to that self belief and never let these people make you question yourself again. Yes I was depressed and anxious, yes I was afraid and maybe I came across as slightly bonkers after all of this but as I said to one Doc, if I wasn't depressed being in this situation I would almost certainly be mentally ill!!. My symptoms were bonkers and moving all around my body. I knew that I was extremely unwell, no one listened to me but now I am completely vindicated, all along Cassie I was right...If you feel something is wrong then the chances are it is

P xx

 

[cad]

Hi Polianna,
Thanks so much.

I am so sorry for all you had to go through, how awful to have to go through so much anguish actually caused by the medical profession when you are already so unwell.

I am gald though now that you can feel justified as when you finally got to see a specialist who knew what to look for instead of dismissing all your symptoms, you were diagnosed and proved right!! Well done for sticking with it!!

I am not letting that burk bother me anymore. I would like to be able to prove him wrong though!! Its is just difficult at the moment as my level of pain is not going to allow me reduce the pain killers. I just have to keep hoping that I can manage this at some point in the future.
The other things is ofcourse that if I do get benefit from some of these symptoms for azathioprine that to me it seems obvious that is some autoimmune or underlying inflammatory cause.

So we shall just have to wait and see what unfolds.

Thanks so much, I wish you all the very besy of luck with own health too!!

Take Care

Cassie