Status
Not open for further replies.
thanks for replying rose, I just have so much going on that I really do not know what I will do if it keeps getting wotse, about 6 months ago my sed rate was 56, than it jumped to about 80 thats when he put me on prednisone 10mg a day, well now the sed rate is 130 so I guess maybe I need more, but for what? tried getting an earlier appointment with the rheumy, they said they would call me if they had a cancellation. Should of insisted on seeing one sooner instead of sitting aroung getting worse. I don't want to complain too much, I know there are a lot of people on this forum who are in worse shape than I am, I just want answers. The twitching started about the same time I started the prednisone, so maybe it is a reaction to that. The twitching does not bother much anymore it comes and goes, it us all over and not localized at all. It is the constant pain and the stiffness that is my main concern. Maybe I should try 20 mg of prednisone, Whats the worst it could do to me, I am already bloated and my hair is breaking off. Have'nt told any of children yet, how I feel, I think they still think I am wonder women, they are all grown and married and hate to complain to them. Since my husband had a stroke two years ago he hasn't been quite right so I do not want to lay any of this on him, well thamks for letting me vent. I am angry with myself for letting this get to this point, without insisting I see someone else or be tested for other things, I just don't buy the diagnosed of polymyalgia rheumatica.
 
Margaret ... I'm sorry, too, that you haven't had more responses. I've read your posts as they appear, and my problem is that I simply don't know what you're talking about, so I couldn't think how to respond. I don't know what a "sed rate" is, and I have no knowledge of prednisone, etc.

My only response is that if I were you, I'd talk to your kids about this. You don't have to be Wonder Woman any more ... it sounds like you did a great job raising them, and I bet they'd be a terrific source of support for you. I hope you find answers soon from your doctor(s), and start feeling better fast.

Take care!
 
Margaret-
About all I can add is that I work in a rheumy practice, as a nurse. I see a LOT of sed rates every day I work, and yes, I see at least one or two over 100 every week. I would not recommend increasing your prednisone to 20mg without calling your rheumy's office.

and if you have to, call them every day and try to get back in to see him. I'm sure they will call you if they have a cancellation, but it never hurts to call them at least once a day, maybe close to lunch, and see if someone has cancelled.

I pray you get back in soon and get some answers to your troubles, sorry I can't be any more help to you, but please know you will be in my prayers,
Never give up,
Never let up,
Never lose faith,
brenda
 
Margaret,

I'm glad some others have chimed in. I wish I had something to offer you, but I think you are doing the most logical thing you can, which is trying to get in and see the rheum as soon as possible. The things you are describing sound like they should be in their realm of expertise, especially with the pain and sed rate.

I didn't see you specifically mention this, but did they check your B12 with the other vitamins? There is an auto-immune condition (pernicious anemia) that can run with other disorders, and it causes chronically low B12. Some of the symptoms of long term B12 deficiency include neuropathy (sensory symptoms, tingling, twitching, etc) and fatigue. Although it doesn't cause severe pain like you are describing (it can cause muscle soreness), it sounds like you have more than one thing going on. Just a thought, and its a cheap and easy to fix.

Take care,

Robert
 
Last edited:
This is the first time I am seeing a rhuemy I have just been seeing my regular md and he is the one who referred me to him. I like my regular doc a lot he is very kind and understanding , I just think he is finally willing to admit he does not have a clue as to what is the matter with me, I even had a test for multple myloma(Bone cancer) came back neg. I have all the classic symptoms of RA, but tested negative for that, he was really baffled when that came back neg. As I mentioned in a previous post I do have type 2 diabetes, but from my last test my fasting glucose was 111 and it seems it is pretty much under control. I do have some nueropathy in my toes,but had that for a while(the numbness and tingling) and I can live with that. Planning guy, I was tested for b12 and it was normal, however my magnesium and potassium was low and I have been taking supplements for that for a month now, do not notice any improvement.also my vitamin D level was very low only 5, I take prescription vitamin d, one pill 50,000 a week, I seem to feel better in general after I take, but no decrease in pain levels. The cramping in my legs have let up a little, I have been drinking a lot of tonic water lately. I would never increase my prednisone on my own(I hate the stuff) it was my family doc who told me on monday to increase it to 20. Still mostly thinking Lyme. I tested positive for it about 8 months ago, took a 2 month course of antibiotics, I know I was bitten by a tick , but that was 8 years ago. Does anyone know if lyme just lays dormant, only to reappear at a later date? Also I have 2 first cousins about my age59, that were diagnosed with lupus. I am an only child, so I have no sibling to compare with. Well thanks for all your replies, I know some of you are have been waiting awhile for a diagnosed also, I know how frustrating it can be. Again thanks, take care, margaret
 
Wheeler

I wish you well with all this.

Yes, I had a +ana not sure of measure's but I think over 80 and it was the speckled smooth pattern assoc. with lupus, but tested neg on the anit sim. I had a elevated sed rate, then went down (that was do to the colitits). I have alot of sx of RA with no swelling. Have you been tested for HLA-b27 gene? I was and it was postivie. It is arthritis gene. It can be for Reactive arthritis/rieters, spondyalitis (that is what my rheumy thought I had) or some other stuff--look up. I have low vit. d also. I really thought that I had a form of that arthritits since I am + for the gene and only like less than 8-10% of population even have it. but then all my twitching and muscle problems. This is tough not knowing. Your family history of lupus can mean something, it can famial. MY dad has scardosis (the diagnosed that killed Bernie Mac) and I tested 'slightly' elevated for that (the ACE). My rheumy said family history is important. Maybe lupus?

Have you had emg? if not get one!
 
Margaret,

One reason for a lack of response to this thread may be that some folks, like me, are simply clueless as to what to write / how to respond. It seems like you have the doctors stymied to some degree, as well.

I do hope you reach an accurate diagnosis soon.

Zaphoon
 
hi, again thanks for all your responses, I will make this post short, I looked and I am not sure how to send a pm, so I will just ask here.Brendapals of the people that come to your office with high sed rates, what are they usually diagnosed with, I know there are no usual, but what are some of the possibilities? Awieleba, my ana was negative , which really stumped my doc as I have all the usual symptoms of RA. I wrote the info of the gene test you gave me and will ask about it. I had an emg about 3 years ago, it was negative, my doc does not beleive I need another one as I have no weakness, I mean I feel weak, kind of like flu like symptoms. kind of hurting all over, but no real weakness, I do have twitching all over my body, it moves around during the day. Well my next step is the rheumy and if he does not find anything I will see a nuero. Zaphoon, I have read a lot of your posts and I admire your sense of humor I know from reading your posts that you are on your own quest for answers and I hope you find them soon. Awielba your symptoms are close to mine so keep me posted if you get a diagnosed, thanks
 
Margaret,
Hey, most of the sed rates we do in our office are to monitor the effectiveness of the medications. Many of our patients have rheumatoid arthritis, polymyalgia rheumatica and a few have other inflammatory conditions. We have a small number of patients with a diagnosed of giant cell arteritis also.
The sed rate is only a tool used to check for inflammatory markers in the blood, one tool of many.
hope this helps a little,
-brenda
 
Margaret,

I just found out my sed rate and cpk level were both high. Yesterday, I didn't even know what a sed rate or cpk level were. I was told the test they ran for rheumatoid arthritis was normal, though.

Zaphoon
 
I am pretty well convinced that I do not have als, no weakness, just want some answers and feedback from others who have not yet been diagnosed. My emg 3 years ago was done for other reasons, if it makes a difference, I had popping and crakling in my joints. The problem I am having now is only for about a year, the cramping started about a year ago, but the twitching and the pain in joints about 6 months ago. The emg was only of my lower extremities Still no weakness, sometimes it does feel like I might fall though because of the pain in my knees. Now I look outside today and there is about a fooy of snow on the ground(I live in indiana) UGH, Have errands to run and also scared I am going to fall. well at least it is the squishy soft snow.:)
 
Status
Not open for further replies.
Back
Top