Feb, You Say?

[suewatters1]

Phoebe22 You say you a proof from a Specialist that you do have problems. Do you have a copy of your diagnoses by that DR. If you have a copy of his or her findings then make several copies and give one to each DR you have.
I ask for a copy of my reports then I make copies of my reports blood work and other stuff so if another DR wants to see it or have a copy of it I give it to him

Sue.

 

[phoebe22]

Can you not just go with the specialist and what he/she says?

Please bear with me; I'm going to have to respond in installments (I'm so tired and brainfoggy I'll start wandering around til I get lost otherwise

Unfortunately, the specialist I saw has since retired from his pratice to go into advocacy and education (of GPs and similar health practitioners). He can't sell his practice because if he does, he won't be considered an "expert witness" in such instances as LTD claims.

I have been hunting for a contact number or email address to let him know his dx has been overturned (is that ethical?) and to ask for advice or possibly some support, but unless I can find him, I'm on my own. I have asked friends throughout the province if they've found supportive, knowledgeable drs, and while some have said their drs are willing to treat their symptoms, it would seem BC has lost its only expert.

There are several tests which would force them to accept the reality of my physical health issues, some of which can be conducted in a dr's examining room, others which would require a visit to the Lab or to the nearest town with an MRI machine, but my dr refuses to conduct/order those tests, sticking with the usual basic panel which anyone with any knowledge of my conditions knows won't reveal anything out of the ordinary. Of the few relevant tests a previous dr ordered, most showed abnormalities, but these have been dismissed/ignored and when I dare to bring them up, I get smacked down for my troubles.



---------- Post added at 11:55 AM ---------- Previous post was at 11:49 AM ----------

Phoebe22 You say you a proof from a Specialist that you do have problems. Do you have a copy of your diagnoses by that DR. If you have a copy of his or her findings then make several copies and give one to each DR you have.
I ask for a copy of my reports then I make copies of my reports blood work and other stuff so if another DR wants to see it or have a copy of it I give it to him

Sue.

Yes, I have copies of the report, as well as test results, and have given copies to every psych and medical person with whom I've dealt since. In fact, I have two reports: one from the specialist and one from a MT trained in the treatment of Fibromyalgia who "mapped" the extreme extent of FM-affected areas, but these (and the test results) have been written off and ignored.

Ha, if I wasn't crazy when I went in ...

:crazy:

 

[suewatters1]

Sorry you are having such a rough time.
I would be mad also if a DR told me that he didn't believe the Reports more or less saying those DRs are quack and that they don't know what they are talking about. I would say to that DR maybe some other people are saying your reports are not true either.
In Ontario we have a site CPSO that you can search for a DR and his information. If he is still a DR maybe he would still be on the list. https://www.cpsbc.ca/ https://www.cpsbc.ca/node/216 https://www.cpsbc.ca/node/211. You can call them and ask them how you can contact this DR

Good Luck

Sue

 

[phoebe22]

In Ontario we have a site CPSO that you can search for a DR and his information. If he is still a DR maybe he would still be on the list. https://www.cpsbc.ca/ https://www.cpsbc.ca/node/216 https://www.cpsbc.ca/node/211. You can call them and ask them how you can contact this DR

Good Luck

Sue

Thanks for the links; if I can figure out how to navigate maybe I'll find him there.

What I do know is that he's still working, but has closed his practice. I've been googling and asking around, but everything I find it out of date. Whether he can or will do anything I won't know unless I can reach him.

So tired ...

:search:

 

[suewatters1]

Your welcome.

 

[Andy]

Please bear with me; I'm going to have to respond in installments (I'm so tired and brainfoggy I'll start wandering around til I get lost otherwise

Unfortunately, the specialist I saw has since retired from his pratice to go into advocacy and education (of GPs and similar health practitioners). He can't sell his practice because if he does, he won't be considered an "expert witness" in such instances as LTD claims.

I have been hunting for a contact number or email address to let him know his dx has been overturned (is that ethical?) and to ask for advice or possibly some support, but unless I can find him, I'm on my own. I have asked friends throughout the province if they've found supportive, knowledgeable drs, and while some have said their drs are willing to treat their symptoms, it would seem BC has lost its only expert.

There are several tests which would force them to accept the reality of my physical health issues, some of which can be conducted in a dr's examining room, others which would require a visit to the Lab or to the nearest town with an MRI machine, but my dr refuses to conduct/order those tests, sticking with the usual basic panel which anyone with any knowledge of my conditions knows won't reveal anything out of the ordinary. Of the few relevant tests a previous dr ordered, most showed abnormalities, but these have been dismissed/ignored and when I dare to bring them up, I get smacked down for my troubles.

I'm tired and brain foggy too so this could be interesting. lol

That specialist sure sounds like the person you need to help you, especially if he is an expert and an advocate. Could you not phone the practice that he owns and see if they can come up with anything? You would think that they would have his number around there somewhere.

In my opinion I think each doctor is entitled to their professional opinion. I don't think it's right or wrong. I guess that's why people always say "get a second opinion".

It is hard enough to find a doctor let alone someone who is an expert in a certain area. It's kind of hard to suggest anything as you live there and know what's what and all that you have already tried.

I don't understand why the one doctor won't do tests. Even if he/she did the blood work and physical exam, if he/she saw something from there then go from there and see what they can find. I find that rather concerning that they will not listen to you.

No matter what illness they think you have you have the right to be heard and taken seriously.

I am getting frustrated reading this because I can only imagine how dismissed you feel.

If I weren't such a mouse and chicken (a mouken), I would be one vicious bulldog mental health advocate. Seriously. *Grrrrr*

 

[phoebe22]

I have decided that until I'm able to locate the specialist (no joy so far) I am going to avoid the topic of my phys problems (except arthritis) entirely. If asked directly, I can be honest and say (for example) "my back hurts". This would lead to them to ask why (ironic, since they never believe the real reason!), to which I could respond in some neutral way, even if simply "I don't know". I can't change their minds without the help of the specialist (or a miracle) so I am going to stop wasting my mental and emotional energy on words no one will take at face value.

My GP will usually treat symptoms (though that's getting difficult due to allergies) so I'll have to remember to stick to exactly that: symptoms.

It's that or disconnect for a very long time. I disconnected for a few hours last night, and when I "returned" found I'd done myself some damage. It hurts, but it's what led me to the conclusion that there's no point wasting my breath. It will also remind me ... for a while at least ... to keep my big yap shut. I'm an honest person who tends to give benefit of doubt, but despite so many decades of experience, I have yet to learn that many do not.

STP, I owe you a reply (several, actually), and I apologize for being too worn out and frazzed at present. Soon, I hope (!)
:thankyou2:

SO tired ...

 

[Andy]

I agree with being neutral if you have no solution right now, there is no sense in stressing yourself out and making yourself feel worse.

I'm sorry you hurt yourself last night and I wish you wouldn't do that. Is there not a better coping skill, a healthier one that can help get you through? I know it's easier said than done at the time. Maybe write, your a good writer.

I don't think you should "keep your big yap shut". Know when to pick your battles right, but don't go silent. I do know how frustrating it is and it does a number on well on my sense of worth what little there is. I am wondering if you have ever inquired about a social worker or community services worker? Let them be your voice if your not being heard.

Oh phoebe lol you seriously don't owe me a reply or have to apologize for anything. You have no idea how much of a space cadet I am. Major brain fog, plus the intelligence, if there was any of that either, is slowly (quickly) declining. :crazy:

I hope you can get some sleep and have a better night.

 

[phoebe22]

I'm sorry you hurt yourself last night and I wish you wouldn't do that.

Me too!

Unfortunately it only happens when I disconnect (which is what I call my "DDNOS" because it can vary to fairly extreme degrees, though I've never developed full-blown DID) I think I understand why, which is a start, but it's a long road from "why" to knowing what to do about it. And, given that I can't trust anyone around here, it's up to me to figure it out.

But it does serve as a valuable cue; it tells me I need to look at a problem (or problems) from another angle. I've been doing really well lately, so it was a bit of a surprise. I guess I got so tangled up in all the anger and fear and frustration that I lost perspective.

the intelligence, if there was any of that either, is slowly (quickly) declining.

If it's in decline, it must have been wayyy up the scale before. I won't give you the spiel about how you sound pretty smart to me (even though you do) because that's the kind of invalidating statement I get a lot which makes me mad enough to spit nails. Only we can know and understand the state of our intellect/cognition.

Grrr ... so there! :lol:

:hello:

 

[Andy]

Do you read any self-help type of stuff? Things you can do on your own that don't need all these other people that you don't trust? I don't know if that's something you could get into or not.

There has to be some sort of agency that you can access for mental health purposes around your area? All of this can't be easy to do alone.

Thanks for the compliment phoebe. Not to many people think that about me so it's nice to know I don't sound completely moronic.

 

[phoebe22]

Do you read any self-help type of stuff? Things you can do on your own that don't need all these other people that you don't trust? I don't know if that's something you could get into or not.

There has to be some sort of agency that you can access for mental health purposes around your area? All of this can't be easy to do alone.

Thanks for the compliment phoebe. Not to many people think that about me so it's nice to know I don't sound completely moronic.

Well, I read informative stuff, but left self-help (e.g. Bradshaw) behind a long time ago, though I did do an abuse "workbook" once, which wasn't very helpful as it just woke up the dragons.

It's the local mental health agency that's driving me gaga ... well, them and my dr. No, it's not easy to do alone, but until someone is prepared to see me for who I am instead of how they choose to label me, I'm basically my only option. I do get some practical help from mental health (they have some funds and services for ppl on DB) but I'm obviously going to have to change how I deal with them if I want to retain what's left of my marbles.

You dont' sound remotely moronic to me, and I double-dog-dast anyone to disagree with me

:cheers:

 

[Andy]

Would you be into any of those mental health services? Well what kind of services? Supportive services of any kind?

Do you think changing how you deal with the mental health agency will help with things? Or is this strictly a keeping your sanity type of thing?

lol Well thank you, I tend to disagree-doh!

 

[phoebe22]

hmmmmmmm ... found an interesting article:

?UNINTENDED? INTERNATIONAL SPREAD OF A FAMILY OF RETROVIRUSES?
by Ron Logan

ME / Myalgic Encephalomyelitis (inflammation of brain and spinal cord) patients (referred to as Chronic fatigue syndrome by some) have taken out an advert in the 6 December 2010 edition of the Washington Post following a recent ban on their donating blood by the International red Cross and various government bodies. The ad states:

?New HIV-like Virus in the Blood Supply. Up to 20 Million Could Be Infected. FDA and NIH research recently uncovered a new family of retroviruses in 7% of healthy blood donor samples. This could mean that 20 million Americans are already infected. These viruses were also detected in an astonishing 87% of Chronic Fatigue Syndrome patient samples. Similar to HIV, this infection is likely to be transmitted through blood. Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS, is a serious and sometimes fatal neuroimmune disease that can be as disabling as chemotherapy or late-stage AIDS. ME/CFS afflicts more than 1 million Americans.?

so according to my dr and the psychs, i should be able to donate?

:hippy:

---------- Post added at 01:57 PM ---------- Previous post was at 01:43 PM ----------

Would you be into any of those mental health services? Well what kind of services? Supportive services of any kind?

Do you think changing how you deal with the mental health agency will help with things? Or is this strictly a keeping your sanity type of thing?

lol Well thank you, I tend to disagree-doh!

LOL! I guess we'll have to agree to disagree on that last point

I can't afford (literally!) to sever all connection to mental health because I'd lose the services (which include 2 hrs/week assistance in such things as errands and appointments + a few $ of what they call a "top up" income added to my DB and desperately needed). What I can do is not say anything regarding my physical health and, if asked, remain as neutral as possible. I really do think that's my only hope of retaining my sanity. They offer practical help ... can often open doors I can't ... which helps with the anxiety, so it's kind of a trade-off.

But I AM absolutely dying to ask my dr:

1) would he accept a transfusion from me (O-neg = universal donor)
2) if he's so convinced it's just "a new form of depression", why won't he send me to be tested for that XMRV virus.

Then again, why risk :badwords: him off?

 

[Andy]

That's interesting. Well they screen the blood, maybe you should go donate and they will call you if there is a problem and you can show your doctors!

Well I am glad you have that little help with the mental health. Maybe that is a good idea then, just stick with mental health, if you think that will help ease a lot of the stress with it.

lol Maybe just ask the 2nd question. I mean if he just did the tests then that would be the end of it, you would get your answer and so would he. Unless it's a really expensive test and that is why he is holding off on it???

My dad is O neg too, I have an extra supply of blood all the time!