Rheumatologist Visit Summary

[MeaganGranger]

Hey all!!So I made my trip to the rhumetologist this afternoon. She did a full exam and looked at all my blood work from the neurologist. The summary is as follows:1.) No weakness, did not think my reflexes were hyper.2.) Good blood pressure, almost low, it was high the last time.3.) Was a little concerned, but not terribly about the circulation in my feet, which might explain the slightly elevated ANA.4.) Didn't feel the twitching had ANYTHING to do with the ANA, or any auto-immune thing, based on my answers to her questions, the blood work and her exam.She said that just to be sure she would re-test the ANA, and check for some other anti-bodies. She said ANA alone is not indicative of much of anything, but given my age (22) she said it was good to check one more time. She also said even if it came back positive again she would only recommend I check back once a year to have it monitored. She said if it came back higher or with some other positive anti-bodies then she would do some more tests and want me to check back every 6 months. She was careful to note, as well, that just because you test positive for these anti-bodies DOESN'T MEAN you will EVER develop a disease associated with them... she said some people test positive and never have a problem, but its good to know in case you experience symptoms, or if you are having a baby (I guess they need to monitor it more closely if you have these antibodies?). Oh! She also didn't feel the twitching was a vitamin deficiency but she said she would check my vitamin D and magnesium just to be sure.So... I am breathing a little easier, and hoping *crosses fingers* that these test results come out okay next week. She said she would personally call me to deliver the news!

 

[bfhopeful2]

I am really starting to think the BFS is some people reaction to anxiety. Instead of panic attacks we get twitching. Anxiety manifests itself in so many ways. Trouble breathing, vertigo, parethesias, chest pain, fainting, electric shocks, phobias, etc etc.

 

[MeaganGranger]

I am really starting to wonder too. I have suffered from anxiety forever and only had one panic attack. Until recently my only way of dealing was meds, which I am now off of. So maybe it was just my body's way of expressing the anxiety, but I don't really know for sure.It bugs me sometime when people just write all my symptoms off as anxiety, because I worry that someday when I am experiencing something concerning then they will just write me off again. I guess its learning how to listen to your body and speak its language right? At the same time, I really know, sometimes I am anxious and tense and I don't even realize it. While I definitely think BFS could be caused by something non-anxiety related, I feel like in my heart I know that even if it is, I will probably never know the cause. I think we try so hard to know the cause to gain some control in our lives. The anxiety is the one thing that we can control ourselves, with meds, support, nutrition, therapy, help from others. We may never know the physiological cause of the twitching, and we may never be able to control it... so for me, right now... after these tests, my next steps are to focus on controlling the anxiety, and my health in general.

 

[BarbiePetals]

Glad your visit went well Megan. I had some bloodwork done myself today but I bet it will come back normal. I don't know if I will ever find the cause my BFS but I think it had to do with anxiety also. My goal right now is to control the anxiety also and to stop focussing on scary diseases.

 

[Krackersones]

Did the doctor say what she thought was causing your twitching or express any real knowledge about benign causes of twitching? I too have been told the ANA titers do not tell you anything specific. The most that has been said is it shows my immune system was reacting to something.

 

[MeaganGranger]

She only seemed interested in the twitching at the beginning, and after I answered some of her questions basically any talk surrounding the twitching ceased until I brought up the possibility of the ANA causing it, or the vitamin deficiency. At which point she said no to the ANA, and unlikely to the vitamin deficiency, but she would check it out. She basically said that my exam was perfect, so nothing physically speaking was concerning her, and that all the blood work from the neurologist looked good minus the ANA, which she is now retesting along with some other anti-bodies. So no, she did not really have a theory about the twitching.

 

[AllGoodHere]

Hi Megan - Good news then! Questions about past injuries or x-rays of spine? My Rhemy was into the xrays - happy to see them and thought that some past damage may be responsible for at least the continued re occurrence of symptoms in certain areas of my body.

 

[Krackersones]

My rhemy didn't have a clue about the twitching either which I find interesting given that there are lots of reports with people with lupus having twitching/neuropathy and people with fibromyalgia having twitching etc. Both of these conditions come under their speciality so you would think they would have more to say about it. I know these two conditions are not easily dx and some don't even believe the later exists. This is not to say that twitching and a positive ANA mean you have either condition but I find it interesting that both are docs were so silent on the symptom even being possibly related to anything rheumatological.Krackersones