Jun 23, 2010
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!