TVCH FORUMS HOME . JOIN . FAN CLUBS . ABOUT US . CONTACT . CHAT  
Bomis   Quick Links   TOPICS . TREE-VIEW . SEARCH . HELP! . NEWS . PROFILE
Referral to Rheumatologist; how worri...

The TVClubHouse: General Discussions ARCHIVES: 2004 Nov. - 2005 Jan.: Health Center (ARCHIVES): Referral to Rheumatologist; how worried should I be? users admin

Author Message
Seamonkey
Member

09-07-2000

Saturday, July 03, 2004 - 12:02 am   Edit Post Move Post Delete Post View Post    
I got a call from my doctor's office today saying that he wanted to refer me to a rheumatologist. I couldn't get much out of her even though I did question why specifically now.. but apparently my blood work continues to have some high "values".

I'm pretty irritated that he hadn't told me previously that this was possibility and why, but I called for an appt which I can't get until August 23.

Does anyone hear have a rheumatologist?



Jmm
Member

08-16-2002

Saturday, July 03, 2004 - 12:08 am   Edit Post Move Post Delete Post View Post    
Sea, Any clue what "values" are high? I would be more than happy to do some research for you if I knew where to start.

One thought, do you have carpal tunnel? That is one of the things that a rheumatologist often treats.

Mak1
Member

08-12-2002

Saturday, July 03, 2004 - 4:59 am   Edit Post Move Post Delete Post View Post    
My friend sees a rheumatologist for her arthritis. DD had to see one when she was 6 for some high values, too. They suspected she had juvenile rheumatoid arthritis but never proved it for sure. I don't think you need to be overly worried, Sea.

Cassie
Member

07-15-2000

Saturday, July 03, 2004 - 5:07 am   Edit Post Move Post Delete Post View Post    
JMM I was referred to one when my CRP tested high. This indicates that inflammation is present.

Daydreamer
Member

09-16-2003

Saturday, July 03, 2004 - 5:20 am   Edit Post Move Post Delete Post View Post    
I see a Rheumatologist, although all of my bloodwork has always been normal, my primary doctor thought I should see one because of my symptoms(muscle pain, joint pain, headaches, fatigue and dizziness among other things). May I ask what if any symptoms you are having? After many, many tests I was finally diagnosed with Fibromyalgia in which all of your bloodwork comes back normal but you just have these awful symptoms.

Here is a link with some info on the CRP blood test.
http://www.bloodworksusa.com/crpbloodtest.htm

Just try not to worry too much. I've had doctor's tell me to stay off the internet because you'll worry for nothing over what you read.
I'm sure if it was anything urgent your doctor would make sure you could get in to see the Rheumatologist before August 23. Please let us know how it goes.

Edit: Can you call your Doctor's office and request a copy of your bloodwork? I always get copies of mine. This way you can see just how high the values are.

Seamonkey
Member

09-07-2000

Saturday, July 03, 2004 - 10:45 am   Edit Post Move Post Delete Post View Post    
Yeah, I meant to ask again for the latest bloodwork results.. I do have some from earlier. I know one concern is some liver function something and I have had a high CRP at times. I'll call them back on Tuesday.

I do have muscle and joint pain and jumpy muscles.. we are trying magnesium on that.

He suspected carpal tunnel at one time but those symptoms seem to have subsided.

I'm on meds for cholesterol (my numbers are way down, ratio is way good now) and for some bone density loss (my mom had osteoporosis and I have tiny bones so I've been proactive except in the exercise area and I'm working on that now) anyway I'm on fosamax and the last spinal scan indicated that I'm holding my own or getting better in that area.

I'm not really freaked out, mostly irritated that he didn't speak to me in person, or on the phone but I'm not against seeing someone to figure out what is going on.

I'll come back with some values..

Yes, I figure it isn't urgent, although you never know with doctors.. I like mine very much but he's not perfect.

Thanks!!

Pamy
Member

01-02-2002

Saturday, July 03, 2004 - 11:03 am   Edit Post Move Post Delete Post View Post    
Well I hope you get the answers soon and that this new doc can help ya feel better!

Urgrace
Member

08-19-2000

Saturday, July 03, 2004 - 12:52 pm   Edit Post Move Post Delete Post View Post    
Hope it is just for a precautionary measure, Seamonkey. Good vibes coming your way.

Ladytex
Member

09-27-2001

Saturday, July 03, 2004 - 1:55 pm   Edit Post Move Post Delete Post View Post    
Thinking good thoughts for you, Sea ...

Seamonkey
Member

09-07-2000

Sunday, July 04, 2004 - 2:15 pm   Edit Post Move Post Delete Post View Post    
Thanks everyone..

For those who wanted "numbers"

I found my last two copies of results (and assume the latest one still had that elevation, causing him to suggest the referral)

CRP is high, as I knew: 3.86 (< 1 being low cardiovascular risk, 1-3 average and >3-10.0 being high)

But the one he's been circling and mumbling about is the ALK PHOS TOTAL, which was 231 late last year and still 198 in Feb. 27-142 is the reference range. I'll call them tomorrow and see what the latest reading was.

I'm not planning to fret much about this between now and August.

The Rheumatologist's office is sending a questionnaire for me to fill out before I come in, so that may also shed some light.

Cassie, what did they determine when your CRP was high??

Daydreamer, thanks for that link.. that's pretty much what I understood about the elevated CRP.. just wish I knew what to do to lower that, but perhaps that is what I'll find out, huh?

Cassie
Member

07-15-2000

Sunday, July 04, 2004 - 2:58 pm   Edit Post Move Post Delete Post View Post    
Sea, my PC really determined nothing. He said I needed to get my cholestrol down and that was about it. The following year I had to push him to retest the CRP and it was still high. (I need a new doctor My liver enzymes were really high that 2nd year too, so the CRP thing was kind of pushed to the back burner.

Seamonkey
Member

09-07-2000

Sunday, July 04, 2004 - 3:09 pm   Edit Post Move Post Delete Post View Post    
Ah.. yesss.. and the CRP is said to be more of a factor/indicator than chol. My cholesterol which has been as high as 365 in my life more than once, is, well in Feb was 150 with hdl of 55, ldl of 76 and ratios that made them happy, but that is on 40mg of lipitor daily. Since then I'm down another 17 lb and have been at least exercsing at curves so hopefully it is maintaining.

Thanks..

Cassie
Member

07-15-2000

Sunday, July 04, 2004 - 3:53 pm   Edit Post Move Post Delete Post View Post    
Wow, that is really impressive. Keep it up :-)

ETA: Just realized I omitted the rheumatologist outcome. I was diagnosed with FM and arthritis but the PC claims that is not the source of the inflammation! (To this day, it has never been explained to me why it is high. As I said, I need to find a new doctor.)

Seamonkey
Member

09-07-2000

Sunday, July 04, 2004 - 5:24 pm   Edit Post Move Post Delete Post View Post    
sigh. I actually do like my doctor, luckily. And my gyn is adorable. And my orthopod is great too.

It is hard to change docs but I had one retire (I liked him) and he sent me to my new gyn, and she sent me to my family guy (he's a DO) and he referred me to the great orthopod, so I have hopes for this new one, too.

Lkunkel
Member

10-29-2003

Sunday, July 04, 2004 - 7:38 pm   Edit Post Move Post Delete Post View Post    
Cassie: Of course we both know how good your PC is. ::snort:: have you looked up the nurse yet, or a FM group?

Sea: Don't worry. This is a typical CYA situation. Just go with an open mind, and don't let them scare you. my icon

Lumbele
Member

07-12-2002

Monday, July 05, 2004 - 9:03 am   Edit Post Move Post Delete Post View Post    
Sea, just an idea, but DH has been complaining about joint and muscle pain since he started taking Lipitor. It took us a while to make the connection.

Beachcomber
Member

08-26-2003

Monday, July 05, 2004 - 5:26 pm   Edit Post Move Post Delete Post View Post    
To add to Lumbele's post, my Dad is on Lipitor and has complained it makes his knees hurt.

Seamonkey
Member

09-07-2000

Monday, July 05, 2004 - 6:48 pm   Edit Post Move Post Delete Post View Post    
Hmm I posted in here earlier, but will try again.. yes.. I'm aware that this can be a side effect and that sucks if it is the problem, because I really do want the results I'm getting from Lipitor. But, yeah, I'm aware, and I'm concerned

Lumbele
Member

07-12-2002

Monday, July 05, 2004 - 8:27 pm   Edit Post Move Post Delete Post View Post    
Sea, dh's doctor is in the process of checking out if a non-statin drug will work for him. Will let you know in a few months if it is working and if the side effects disappear.
Keeping my fingers crossed for you. Good luck!

Seamonkey
Member

09-07-2000

Monday, July 05, 2004 - 9:30 pm   Edit Post Move Post Delete Post View Post    
Fingers also crossed for your dh, Lumbele. Yeah, my doc says there are other options if necessary. But, the statins soeem to be good for other preventions as well.. of course if the reality is that I can't take it.. I'll have to face that.. but not happily, I can assure you.

Seamonkey
Member

09-07-2000

Friday, August 27, 2004 - 10:26 pm   Edit Post Move Post Delete Post View Post    
So I did go and confront/see my doctor, with a great outcome.. he thanked me for bringing up my concerns/complaints.. his reasons for referrig me were for elevated sed rates and CRP over a period of time. He doesn't think the lipitor is the problem.

So I saw the rheumatologist last week and he's nice. He also doesn't think this is a Lipitor side effect (whew).. He sees the indication of inflammation and the possibility of liver problem.. asked a great many questions, did a pretty good physical, had bloodwork done and a bunch of xrays of my lower spine. I had the results of three spinal scans, one a DEXA, one as part of a full body (torso) scan and a followup spinal scan which does show improvement since I've been on Fosamax, but of course there is some degeneration and other problems there and I've had lower back problems for decades. (the body scan said I have disc narrowing from L2 all the way down the spine, degenerative joint disease in L4-5, facet joine arthropathy in l4-5, L5-S1, narrowed neural foramen, left and right L4-5, mild dextroscoliosis and hypertrophied ligamentum flavum.. which sounds scary but really just means I have a rotten lower back :-) If I had to carry around all those names in my head all the time, I probably wouldn't be walking..

He says it could be separate liver and spinal problems OR there is a type of arthritis which is liver involved but that would be atypical in me, more typical of older men (but he says he's been around long enough to know that he cannot rule it out in women without investigation.

So, I go in next week for a followup.

Both docs say I could end up going to a gastroenterologist too.

So, really nothing new to report as far as results.

Went to my orthopod this week for what I thought was just a followup on my knee surgery but at 9 mo post surgery, he says.. do anything on that, but he was following up on my shoulder/rotator cuff problem. I told him I'd backed way off on exercising that with the result that it only hurts if I stretch it out.. well he says that is phase two and I have adhesive capsulitis and now have some "passive" exercises to do for six weeks.. if I don't work it, it will become worse/frozen. The first phase was inflammatory.

Lumbele, hope your dh is doing well on the non-statin..

Cassie, I hope you found someone to listen to you.. it certainly sounds like there is a connection there I'll join Lk in a hearty ::snort:: here..

Texannie
Member

07-16-2001

Saturday, August 28, 2004 - 6:48 am   Edit Post Move Post Delete Post View Post    
Glad to hear you are getting at least some answers, Sea. Are you getting any relief?

Juju2bigdog
Member

10-27-2000

Saturday, August 28, 2004 - 12:14 pm   Edit Post Move Post Delete Post View Post    
Sounds like I better keep carrying Seamonkey's backpack for a little while longer.

dog backpack

Cassie
Member

07-15-2000

Saturday, August 28, 2004 - 2:58 pm   Edit Post Move Post Delete Post View Post    
Sea, I'm glad you are getting somewhere (sounds like you have a great team of doctors there and I wasn't surprised about the potential visit to the gastroenterologist either). I saw my PC again yesterday (grrr...) and have spent today researching many of the sites Laurie so very kindly sent me a month ago. (No, Laurie, I haven't been able to contact the RN yet but have another RN hunting her down. I'll email you if and when I find out anything.)

Seamonkey
Member

09-07-2000

Friday, September 03, 2004 - 9:49 pm   Edit Post Move Post Delete Post View Post    
I returned to the rheumatologist today.. He says perversely the alk phos rates that have been high for many months spread over 4-5 tests are now normal for the first time >>

But now a liver enzyme reading is high .. this is one that is not of bone origin. Also a mildly elevated sed rate probably from inflamation, not degenerative arthritis.

And my CRP is now normal, which is a good thing to go with my good chol readings!!

So.. I don't seem to have the odd degenerative arthritis caused by liver problems that usually doesn't occur in women but he wanted to check anyway.

However someting may be up with the liver, so my next step there is to have an abdominal ultrasound to check the liver and other areas (and personally, that is good since I'd been wanting to recheck the abdominal aorta.. I lost a good, elderly, friend last year when she had a burst aneurism of the abdominal aorta.. this can be very difficult to detect.. she thought she had food poisoning from fast food, put off going to the doc and it was too late.. it can also be sudden.. as in the case of John Ritter.. so this ultrasound can do double duty IMO.

Meanwhile the series of back xrays showed what a chiropractor said years ago.. I have scoliosis .. and it also confirms my 2001 body scan that I have degenerative arthritis in the lower spine. He gave me some simple back strengthening exercises to take home and also said I might want to explore things a bit more in this area with a neurologist, since this lower back is probably the cause of the very irritating jumpy leg muscles. They don't hurt but they drive me CRAZY and cause loss of sleep.

I have an appt set up for the ultrasound.

He gave me a neuro referral but said if i wanted to get another referral from my family practice guy (he's a DO) that was fine. So I had to call the DO to push back my followup appt so he'd have the results from the rheumatologist, the ultrasound, etc., and asked his office manager who he normally referred to for neuro and it was the same guy.. so with two people sending me there, I've got an appt set up!

The bottom line is that nothing seems to be life threatening. Still want to pursue the liver a bit. As for the arthritis .. he says if I'm not in chronic pain, then taking daily meds isn't advised.. and that is definitely my position.. I've been given various samples but unless something will cure the muscle twitching, I don't see any point in adding to my blood pressure med, lipitor and fosamax regimin.

So I get to add these back exercises to the ones for my shoulder and go forward from there.

Hopefully I can get back to a less self-absorbed stage, knowing that there is nothing "known" that I'm ignoring (well except for getting a colonscopy by the end of the year. That's a goal.)

Cassie.. showing my ignorance here, but what is a PC?

Laurie, have your migraines backed off? Hope so.

Seamonkey
Member

09-07-2000

Friday, September 03, 2004 - 9:51 pm   Edit Post Move Post Delete Post View Post    
LOL Juju!! Knowing how you like to travel light.. the expression on your face was priceless when you decided you had to carry my backpack..

That is a good backpack,even though it is quite ugly (mine.. not the doggie ones up above.. those are quite attractive.)

Seamonkey
Member

09-07-2000

Saturday, September 11, 2004 - 12:10 am   Edit Post Move Post Delete Post View Post    
I had my ultrasound this week (seemed very lengthy and thorough; will be interesting to see the results). See the neurologist next week (spine) and then seem my regular doc the 21st.

Resolved to walk three days a week and rashly set out on a walk today with not the right shoes so ended up with hurting ball of the foot, incipient blister which meant no Curves today, and also with back spasms, first in a long time. SIGH!

Juju2bigdog
Member

10-27-2000

Saturday, September 11, 2004 - 10:29 am   Edit Post Move Post Delete Post View Post    
Got to have the right shoes, Seamonkey. Also remember the days are starting to get shorter, so you will want some shoes with reflective materials for safety.

dawg shoes

Seamonkey
Member

09-07-2000

Saturday, September 11, 2004 - 1:29 pm   Edit Post Move Post Delete Post View Post    
Woof! My walk was in broad daylight at 2:44pm.

Juju2bigdog
Member

10-27-2000

Saturday, September 11, 2004 - 7:57 pm   Edit Post Move Post Delete Post View Post    
Hope you weren't walking in shoes like these. These are strictly for walking around on the carpets at home.

dog moccasins


Seamonkey
Member

09-07-2000

Saturday, September 25, 2004 - 5:01 pm   Edit Post Move Post Delete Post View Post    
I know more now, so can follow up a bit here.

The ultrasound, which seemed quite thorough, found nothing amiss, which is good. I specifically asked if they'd be reporting on the abdominal aorta, which they did and it is fine. (that was where John Ritter had his aneurysm that cost him his life since they didn't check that but treated him for heart attack.

The neurologist checked me all over, gave me some meds to try for the jumpy muscles.. and the muscles haven't jumped since! Meds made me terribly sleepy.. reading about them it seems that some people have been known to literally fall asleep, suddenly, while driving! eep! I was also a bit alarmed that the med is for incipient symptoms of Parkinson's. My DO says the neuro probably didn't think I'd look it up or read the package inserts (sigh) but was undoubtably using it for "off-label" purposes.. for my symptoms. I've cut down to twice a day and maybe will go to once and see if that holds off the symptoms.

I go in after I return from Mystic for the test involving needles and electricity.

Still working on my shoulder, which is pretty restricted.

I don't have cool shoes, though.