Hey! Hope that you are doing okay? We've (Julie and Heather) been wondering about you. We're hoping that Colorado was so helpful, maybe they've kept you for treatment? ET phone home....sniff, sniff.. we miss you!

Sending you lots of cool vibes to get well by! :angel:

Cal Sun :cool:

ROFL!!:D It got my attention! If Kim doesn't follow this trail then she's not around these days. <Sigh>

Valiant effort, CalSun. I hope it pays off!

Hiya Kim! :wave:

Julie

Hhmmm.. not only did it catch my attention... now I've got a craving! ;)

Kim? Are ya around yet? I'm betting she ran off with a buff, hot 22 year old who drives a convertible and owns his own tropical island.. at least I'm *hoping* that's whats happened.. LOL.. :D

Hhmmm.. not only did it catch my attention... now I've got a craving! ;)

Kim? Are ya around yet? I'm betting she ran off with a buff, hot 22 year old who drives a convertible and owns his own tropical island.. at least I'm *hoping* that's whats happened.. LOL.. :D

Okay, let's up the ante here! Hot Fudge Sundaes!


Here Kitty, kitty, kitty.....

Hi My Friends! I have missed you all so much.

I am so sorry that I have stayed away so long. Denver was a waste of time. Neuro said not Migraines. Get lots of rest, quit smoking, and call for an appoinment if you need anything. OK! So dead end. I decided that if Denver did not show anything then I was going to stuff and suppress this thing. I did ok for awhile.

I changed my primary care and Holy Heck! This is the clinical findings.....



High Cholesteral 216

Positive ANA 1:160 speckled pattern (ANA results one week prior 1:40 speckled pattern)

Bone Loss in jaw and spine

THS very high....they think Pituitary Gland (t3 and t4 within normal limits)

So on Wednesday I got my first steroid injection, hurt like heck, but I felt better until today. Head pain is back amoung other things. Demerol has been my friend today.

On Friday I was told that I have an Autoimmune disorder. My new PCP has said it is possible vasculitis. I am not holding my breath. I have a scheduled appointment with the Rheumetologist on November 30, but PCP said she would try to get me in sooner.

So here I am....with somewhat of a DX and I feel so horrible. 3 years later and I probably won't get a difinative dx. I am in limbo..............................

Thanks for caring,
Kim

That's what I get for dropping off the face of the Health Board. Now I am being ignored :O( I got my first Morphine Shot Yesterday........never again!

Please say hello!

Kim

Hi there, Kim!!!!!!!!!!!! It's great to hear from you. Sorry that Denver was a waste of time. We were all so hopeful for you. But it sounds like you found a good primary care doctor and maybe you've now started down a path that will lead to some answers.

I am so busy these days that I only check the boards once in a great while. I'm glad I stopped in today and saw your posts. We're framing our home, trying to get it dried in before the snow flies. It is so much fun, but lots of work. I'm careful with my hand, but there is still lots I can do to help. I nailed down so much subflooring this week. I can drive a nail in 3-4 whacks!

My daughter (and her 4 yr old daughter) are now living at home with us, so it is a lot easier for me to help her. She's doing really well since her hospital stay last month. She's been to the Mayo Clinic again and has started on Copaxone again as her neuro is very concerned about how aggressive her MS is. She tried it before, but ended up suicidal. He now thinks that it was the combo of other drugs she was on (ambien and provigil) that caused the depression. We'll be watching her closely.

By the way, Demerol was my friend during the worst part of my RSD problems. It's the only pain med that doesn't make me nauseous. I'm glad it's helping you, too.

I'll check in once in a while to see how you and the rest of the gang are doing.

Take care,
Julie

P.S. Big 'Hellos' to CalSun, Heather and all my other friends here.

Hi My Friends! I have missed you all so much.

I am so sorry that I have stayed away so long. Denver was a waste of time. Neuro said not Migraines. Get lots of rest, quit smoking, and call for an appoinment if you need anything. OK! So dead end. I decided that if Denver did not show anything then I was going to stuff and suppress this thing. I did ok for awhile.

I changed my primary care and Holy Heck! This is the clinical findings.....



High Cholesteral 216

Positive ANA 1:160 speckled pattern (ANA results one week prior 1:40 speckled pattern)

Bone Loss in jaw and spine

THS very high....they think Pituitary Gland (t3 and t4 within normal limits)

So on Wednesday I got my first steroid injection, hurt like heck, but I felt better until today. Head pain is back amoung other things. Demerol has been my friend today.

On Friday I was told that I have an Autoimmune disorder. My new PCP has said it is possible vasculitis. I am not holding my breath. I have a scheduled appointment with the Rheumetologist on November 30, but PCP said she would try to get me in sooner.

So here I am....with somewhat of a DX and I feel so horrible. 3 years later and I probably won't get a difinative dx. I am in limbo..............................

Thanks for caring,
Kim

Hey Sweetie! Good to hear from you! I haven't been on the computer for awhile and found your post a supreme delight to find! :D

That is interesting the PCP is suspecting vasculitis. Do you have any venous stasis in your eyes? I hope the rheumie is very helpful. Your ANA is a good clue as well as the hi cholesterol, and he'll probably do more tests. I can't remember all the hx of your labs but have you ever had an ANCA? Anyway, I think the rheumie referral is a good step forward! Lupus is a vasculitis so is WG.

Haven't heard from our friend Heather in awhile. I've been wondering how she is doing. I hope that she found an activity to keep her occupied and not away due to an exacerbation. In July she had back surgery and I'd like to know how's she's doing but I haven't seen any posts from her.

Julie, I'm glad to hear that you're busy! Lots of hugs to your daughter and grandchild! Keeping fingers crossed that all goes well with your daughter's treatment. :angel:

No answers yet w/regards to a dx but I'm stable. I'm adjusting and finding interests. As you can see from another post, a condition that mimics MS was ruled out. See post about Susac's Syndrome. Very rare disorder but I have the symptoms but for the key to dx it, and that is the BRAO---Branch Retinal Artery Occlusion. Susac's affects the cognitive, and if not treated in time, can leave a patient with a residual affect of dementia. It can affect hearing up to loss, and it also affects the eyes. Complicated migraines is another misdiagnosis for it. MRIs and diagnosing the BRAO is how it is dx'd. The good news is it is treatable and can go away within 3-5 years. If treated right away, the patient may come out of it with barely any residual affects. Hearing, vision, and thinking abilities intact. So passing that tidbit of info on in case it is helpful to someone.

Good to see your posts again--all of you! Have missed you all and look forward to seeing you around!

Your pal, Cal Sun :cool: