Hello, its been a while...

[nhnancy]

Hi everyone, Christel & Jeff I have tried to read the latest posts, to get caught up.
I have a brand new Rheumy....she is young knew about my GAVE...
The reason....I am in horrible pain in my arms, wrists, hamd...knees, lower legs and feet, inflammation through
the roof.
Many tests, nothing showing like arthritis, Lyme...could be a virus?

I took prednizone but it keeps me awake. no bone deterioration showed on exrays.
I am very fatigued and have lost all padding on hands and feet....
taking Tylenol..but need something more

I am still on mino, 100 mg. 2X a day...

Lots to tell you, hubby is home, 100% disabled Vet, just got SSDI and is qualified for his retirement, dueto disability, he has RA, severeback issues, and war related illness.

I wish we were all closer...

xoxo, will try to pop back in....thinking of you
trying to enjoy whatever I can..

Nancy...

[jeffn]

Well - good to hear from you Nancy but sorry about your health news. When do you see your new Rheumy again? Where are you seeing her? Still Boston, IIRC that's where you were going. I hope the new Rheumy can come up with a program for you. Is she thinking about a new or additional med? I was recently thinking about you "northern girls". I was hoping no news from you might be good news but... Tough situation with your hubby not in great shape either. Hang in there. More later off to work.

[nhnancy]

Hi Jeff,
I see her this next Friday, the 13th. I am unsure of her, she is young andher experience with SD is prolly nil!
I plan on asking her about it, then. I was in bad pain and called her office, someone (secretary) returned my call telling meto go to
urgent care.....
“forwhat, to be evuated by yet another ER Doc that has no idea about SD.?”

I found a great page, from Johns Hopkins, here:
www.hopkinsscleroderma.org/patients/living-scleroderma/

it cover Scleroderma Arthritis and Tendon rubs (tendonitis) I plan on giving this to her, also
She wants me to havea nuclear bone scan, which, I do not plan on doing...
for Gods sake, I am 68, have lost so much muscle mass, foot and hand padding, just give me something to help, when tylenol arthritis isn't enough. I have neuropathy.
I am exhausted, most of the time...terrible fatigue...CFS.

Sorry for typos, words running together...spacebar is finicky

my primary has some results for me, shetook a while ago a month+, (i dont understand)

Thank God for tranquilizers!
Nancy

[jeffn]

Are you still going into Boston to see the rheumy or somewhere close to home? It is frustrating, when I was looking for a new primary I tried one and he wanted me to have a bunch of tests up in Boston. If I really thought I need them I would have gone but all said and done I continued my search for a new primary. Is there another rheumy around you some where? How close are you to Dartmouth? Or perhaps your visit tomorrow will go better. I hope so!

Is the bone scan to find bone loss or for something else? Not familiar. I have had the garden variety ones, not a nuclear one.

Yes the happy pills probably help. I asked my doc early on about them and he said "don't wait too long" In the end I did not got that route but they do have their place.

Let us know the outcome. Hang in there Nancy!

[jeffn]

Good luck with your appointment today Nancy.

[nhnancy]

Hi, Jeff, thank you....
Well.....it turns outthat I now have RA, also
She, started me on Methotrexate/ folic acid.....it can take 3-4 weeks to work, so I am still doing Tylenol and a
low dose of Prednisone to keep the inflamation down.
The pain seemsto be abit less and I am sleeping better..
Iam hoping that the fatigue (CFS) will improve, as it was explained to me...
that because my immune system is”overactive” it causes fatigue....
You know, like when youget a coldand yourbody isfoghting it, you get really tired...
I guess my minocycline wasnt suppressing my immune system enough.....
Thank youfor the well wishes!
My hubbyis able to get his retirement, as if he were 65, so that will help....

Maybe we can take some bus trips, once Ifeel betterand we get MORE MONEY, MORE MONEY, LOL,

I hope you are feeling well....ready for the summer to wind down, soyou can have your island back!

I saw a bus trip to thecape and islamd someplace....hmmmmmm,m
NhNancy

[jeffn]

Hey Nancy, sorry for the late response. I have been laid up about a week with what I found out today it is a disk problem. Something else to fix. Off to the mainland at some point for a consult.

RA too aren't you the lucky one.good news about hubby though. Another hurdle hurdles. Sleep is good and may those new drugs do their thing quickly. I do remember the fatigue part not very fondly.

Have to go typing on my back does not agree.

Be well and happy you have some answers.