Rejected

[mamafigure]

Just letting you kow that I have been rejected from the Mayo clinic. Also my blood tests came back a lot worse than before, so I don't know what is happening. The GI dr, who referred me to Mayo asked me to get a referral from the neuro...and I think that his records are why I am not going to the Mayo. He thinks that I am a nut case.

So, just updating.

mama

[ms1128]

so sorry that you have to go through all of this crap. So many of the docs "neuro's" in particular, thought I was a nut job until I had the muscle biopsy x's 2, then a series of TIA's, and with that the lupus and APS showed. Well..it put a few neuro's in their place!

Before I had the biopsy I had to have a neuro psych consultation to rule out conversion disorder. It was the best thing I ever did.

You know your body. Stick with the docs who are doing their jobs and the rest will come in due time.

God bless.

[fishdude]

So sorry to hear that Mama - it is annoying how often we lay-people have our opinions discounted when compared to doctors.

I would suggest, however, a two-pronged attack to resolve this.

1. talk to your GP about trying to get A) him to intervene and/or B) another neuro to examine you (time consuming and miserable, I know, but worthwhile).
2. write a long, reasoned letter to Mayo explaining the situation, and asking them to reconsider.

I am guessing that one of those would work. In the meantime, as alwys, you are in my thoughts


Fish

[mamafigure]

Thanks, Fish.

I'm going to try for a little longer and if nothng happens soon, I think that I will take a rest. i am tired.

[minnie]

Mama, I am sorry that this is happening... I wouldn't want to go somewhere that once rejected me... Mayo wasn't helpful for me at all.... also they are part of the reason my uncle is deceased, in my opinion. He went there with strange sx, but also a very painful back... they told him it was good he was sick, (throwing up) because his only problem was obesity... their dx? lose weight and come back in a year if you are not better.

He died before his year was up... his family doctor found the problem with a simple back x-ray which led to his dx of Cancer... too far gone to do anything.

So in my opinion... no loss there if they won't help you... I am sure your family doc will have some other avenues to try.

[mamafigure]

Thanks Minnie, Fish, Shirley, Lex, Ms, Deb and my other friends,

I am taking a break from here, and I hate to, since it isn't doing so well, but I am emotionally fragile now and so need to leave.

If you need me, you know where to find me.

Love to you all,

Your Mama

[lexiathedragongirl]

((((((mama)))))))

[islandshan]

Hi Mama,
My dad told me I should march back in there and demand further explanation of my mri and I said "daddy, I CAN'T do that. They will think I am a nut case. They already think I am a nutty worrier." And my dad said, "doctors love worriers. Worriers come in alot. They pay the rent." So I guess there is something positive about us nut cases right?

I am not familiar with this place and what is going on with you right now, but I do think you ought to explain further. No one should be shut right out of something. You have rights..

[ms1128]

mama,

why not stick around for the continued support??? I was 19 when I got ill. It took til I was almost 45 for them to make a diagnoses. I felt abandoned by God. I understand the need for a mental break....but, don't go for to long.

[mamafigure]

I wasn't expecting any responses, and am humbled by them. Nice to see you Shannon!

I will check in from time-to-time. Had a GI test yesterday that made me very ill for the rest of the day, night but am mostly recovered today. They are scheduling and MRI or CT scan now.

Love to you all,
mama

[debblyn]

shan you can march your butt into see the radiologist who looked at the mri before he handed it over to the neuro -- I did it.

the radiologist spent over an hour with me = we discussed the lesion on my brain stem and all other aspects of my brain - I told him I am a chronic worrier and I didnt feel the neuro was talking to me with the kind of detail I ultimatly wanted.

I simply called the radiology dept at the hospital who did the MRI asked if I could speak to the radiologist who read the initial pictures -- interestingly this radiologist was a part time doc who works with the hospital on a contract basis to come in and read films etc -- he was not used to speaking to pts but once he got started he was amazing and I learned a lot about my brain.

so dont call the neuro back try to see if the radiologist will spend some time with you going over your pictures.

you are not a nut

db