All Journal Entries Journals

Rheumatologist Visit

Jun 23, 2010 - 11 comments

Hello everyone,
I am typing this out and sending the same thing to all my good friends who care about me so some of you will know all this already, some of you will know some of it, I just can't type it out so many times, too much pain involved.  I hope you can understand and thank you!

Ok, here is info on my rheumatologist appt. which did not go well. However, there was some positive points so will say them first. My bone scan is great - he said I have great bones for my age, so am thrilled with that at least, especially since I hate milk and never have drank it.
My blood work all came back normal or negative. So, no lupus, no any other bad thing.

Then, he said that he had test results from my pulmonologist that showed something  - it has to do with my oxygen diffusion. It hangs in the low end - I have known this for awhile - so he says - I think your pulmonologist should check you for pulmonary hypertension (which I am about 99% sure I don't have) but will tell my pulmonologist. He was going to send a report to him.

Then, as for the peripheral neuropathy that I do have - I have no underlying cause for it that he can see from his testing, so he said I most likely have nerve damage from something and that my neurologist should do a nerve biopsy. He is sending a report to him too. I see the neuro next week, so will inquire about it.

In the meantime, I am sitting there in pain all along my neck and shoulders (on a scale of 1-10, it was at least a 10) and he is telling me that he can't help me. and when he was talking about the pulmonologist and neurologist, he made some rude comments - basically, like "why did they send you to me" and that is what he did a year ago when I went to him and I didn't like it then either. This time, I did say "well, the neurologist wanted to rule out underlying conditions first, with the blood work" HELLO

So, I say to him "could it be fibromyalgia?"  Just this morning I printed out all the symptoms and I have every single one listed and was prepared to show him. However, he answered my question like this "Fibromyalgia is not a real condition, it is psycosomatic (something like that)" meaning it is all in your head.  Well, now I am mad but at the time, it upset me and I didn't say anything - I just wanted to cry, I was in pain and he is telling me it is all in my head!!!  I plan on sending him a letter with verification from the Mayo Clinic on Fibro!!! Not that he will care, but I will feel better.

After leaving there, I went to see Mariana and had a good cry. Thank you Mariana for always being there for me. I am still in tears because I feel like I am just "out there" with all these symptoms and in so much pain.  I do see the neurologist next week so he might be able to explain the peripheral neuropathy better and I am trying to get into my primary as she believes in Fibro and she will help me I think. I don't know that I have it but a lot points to it and I don't know yet what the treatment is for the peripheral neuropathy.

So thank you to everyone for listening to me, offering me advice and really just caring. I can't tell you how much the support means to me!!! You all know who you are!! I love you!

I am contemplating taking some time off to do absolutely nothing but very basic, I might not even get on emails for awhile. I am just feeling very overwhelmed and upset and frankly, tired and in pain. But you know I won't be able to resist emails so will get on to check on everybody else when I can!


Post a Comment
187666 tn?1331173345
by ireneo, Jun 23, 2010
I hope you never have to see this ding-a-ling again. He's in a rut and doesn't believe in modern medicine. Fibro seems to be pretty real to a lot of people and can be managed. But you need someone who's willing to work with you.

My kids had trouble with their PE teacher in school who didn't believe in asthma. Just figured my kids were out of shape and if they worked harder, they'd breathe better. Yeah, sure.

Keep chugging along. The more you can move, the more it helps the fibro. You don't have to prove anything to anyone. But don't give up.


Avatar universal
by rebel5, Jun 23, 2010
aww sweetie.... i will email you, but i know how real Fibro is and i know how much you have been suffereing for the 2 years ive known you.. i love you and am here when you are ready xoxox

643704 tn?1304684432
by Flicka0459, Jun 24, 2010
YOU TELL THAT [email protected], that it's not in your head.  My sister Pat has fibromyalgia and she is in a wheelchair because of it.  And you tell that [email protected], that my friend Liz has it, not to that extent.  She deals with it.  AND YOU TELL THAT [email protected], THAT HE IS A [email protected]

Ok now I'm calm, but not really.  You take all the time you need.  Consult with your primary doctor, she sounds like she knows what she's doing. Keep doing your research and show your primary doctor all your findings as I'm sure you already do and come up with a plan.  I'm coming up with a plan of my own maybe in October or November, kidnapping Trudie and heading to sunny FL?  I just need to see if Trudie can get off and if I can afford it, but you need us now more than ever.  Love Lisa

483733 tn?1326798446
by TrudieC, Jun 24, 2010
I am game.  I will find a way to do this.  Yes, a friendervention is required.

483733 tn?1326798446
by TrudieC, Jun 24, 2010
Do you think we could picket his office when we're there and let everyone know what an @ss he is?

Avatar universal
by helenl89, Jun 24, 2010
This guy is more than a jack ***, he's a idiot. I have two good friends with fibro. One so severe she can barely walk, the other a young girl, a little older than my daughter. This is a real disease and should be treated as such. Just once I would like to see these drs walk a mile in your shoes, and see what it's like. As for the neuropathy, I have   this, but mine is due to the chemo drugs, Sometimes it flares real bad, stress agrivates it sometimes. I found taking vitamin b complex helps it some. After two years its still there, I fear it is probably permamant. It's painful sometimes and very annoying. Wish I could give u a big hug, but I would be afraid it would hurt, so I'll just send one. Hang in there, some dr is bound to find a answer.

378425 tn?1305628294
by dawnlyn, Jun 24, 2010

I am so sorry this doctor is such a jerk....How dare he......I am with the other gals here.....he needs to be put in his place.....I feel for you I too have a very good friend who is affected by fibro....I really hope you can get some answers...I think I too would start with family dr....At least this dr seems like they are willing to listen to you....and not pass judgement.  I am so sorry you were treated the way you were.....I feel so bad....Like Helen I am sending you ((((((hugs)))))) I think you need not to give up they will listen....You have come so far please hang in there.....  Me I am hanging in there just playing the waiting game - waiting for next test......I will let you know as soon as I hear something....please let me know if you need anything....Thanks for being you.....I am here if you need me....Love, Dawnlyn

194838 tn?1303428544
by silver&gold, Jun 25, 2010
Oh what a total idiot that doctor is, Fibro is a very real condition and is very well recognised over here in the UK.
How dare he make out its an imaginary illness!. I too join the others and send you a great big hug Colleen, you have been (and still are) going through so much for the past 2+ years and that is enough to really pull anybody down. We all love you though and are here for you as you are always here for each of us, I feel like wringing that doctors neck !!!!. . Sending my love and prayers that and hope that all of your health issues can be resolved very soon.



329994 tn?1301663248
by lvfrogs, Jun 25, 2010
Thank you everyone, you made me cry and made me laugh with the comments. I do so appreciate your support,you cannot begin to imagine. I don't get this support from my family and friends, like I do with you all. I know it is because we have all been through so much together!!!
Irene, sorry about your kids when they were little. That is assine too!
Brooke, thank you, I know you care!
Lisa and Trudie - a friendervention - a new word, I love it. You all make me laugh so much and yes, Lisa, you sound exactly like Jan would and that made me smile and cry all at the same time!!  It would be the best gift in the world if you two come down to Florida. That is a beautiful time of year and you can stay with me or I will find us a cheap place on the beach!!! Just thinking about it has lifted my spirits.
Helen, I didn't know you had PD too. I have heard that chemo causes it. I see the neuro on Wed., so maybe he will give me more info. I have been reading up on it and there are 3 types so need to know what type I am and go from there. He seems to be a good doctor so I think he will help me.
Dawnlyn, please let me know how your other tests come out. You know I am thinking of you always.
Angie, same too, you have been here for me for so long. I don't know what I would do w/o you all. It brings tears to my eyes but they are good tears.

I can't see my primary until July 19th which s***ks! but they said I could keep calling for a cancellation, so I will. and the neuro is next week, so I will update everybody after that. The typing does not help at all, so I am off but wanted you all to know that I read these messages and I love you!

773755 tn?1328119777
by acker, Jul 07, 2010
F * C K E R ! ! !  IGNORANT PILE O SH*T ! !
o mate that's so bad - makes you wonder why they're in the field of 'specialty' they're in! so ****ing far-removed from what's actually going on in the real world.
"that dog won't hunt"
time for another dr
may as well be the flute-player in the irish band at the pub on the corner.
don't know what i meant by that, but that last dr is useless.
sorry for it being a crap visit. good on you for sending him the mayo verification. so proud.
take care
o - here's what i've done when i've been hurt or annoyed; maybe not what jesus would do, but it worked for me, and if i don't get my anger expressed or acknowledged, it truly brings me down; so here it is: get a square of toilet paper and write on it the offender's name, e.g. "commonwealth bank" - then use it on your wad of toilet paper to wipe your @ss. i was surprised how well it worked, i only had to do this once or twice. if it doesn't work for you, at least i don't think it'll hurt. normally i would be concerned that people might think less of me (and certainly not more) if i say this, but it's quite serious; anger must be expressed; we withhold the expression at our peril, as much as suppressing a festering wound is detrimental and makes things worse. out with it! vital!

329994 tn?1301663248
by lvfrogs, Jul 08, 2010
Oh, my you made me laugh! Especially with that sweet little profile picture then your words, made my day!

may as well be the flute-player in the irish band at the pub on the corner.

I don't know what that means either but it made me smile, your whole email did LOL
Never tried the toilet paper thing but I might have to do that with his name. It might make me feel a whole lot better LOL

and I don't think less of you! Thanks for actually cheering me up :)

Post a Comment