Its me again.. Broke down crying at dr.

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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 9:32 AM (GMT -7)   
Hi all:
 
I was dx with fibro (10 years).  Then test positive ANA 1:640.  Saw rheumy today..she went over every test with me..test i didn't know was even ordered and the test for lyme disease.  All came back negative.  She told me that I don't have lupus..she said some meds I was on, probably elavated ana or a family gene.  But she gurantee I dont have lupus or lyme and none of the criteria. 
 
She think its fibro..until I told her about my tongue hurting and swallowing issues and how my leg has been weak off and own for years-pain and twitches.  She said she want to run some more muscle test (muscle enysmes did not show any break down of the muscles).  But I could have some rare mucles disease..but all the test her and other doctors ran are normal.  Now i'm really scared..(she even told me that when she first seen me she was worried for me-until she got the test results) ..Now she want to do more and said depending on the test she may refer me to the Mayo or Cleveland clinic, because she doesn't know what other test to do-ALL HAVE RAN.
 
NOW I'M SO WORRIED AND DEPRESSED... DON'T KNOW WHAT TO THINK.. I HAVE TO WAIT FOR A WEEK OR SO FOR RESULTS..(VERY SCARED).. 

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40580
   Posted 12/2/2008 9:44 AM (GMT -7)   
I think that the best thing that you could do right now is try to keep your mind busy until you get the test results. Worrying about this will only cause you more pain, no matter what it is that you have. Anxiety makes it worse.

So try to relax, keep posting, we are here for you. Did she say what the muscle disease might be? You could always research on the internet to get some answers.

In the mean time, try to relax. We are here for you.

Luv and hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 9:54 AM (GMT -7)   
No she didn't say what muscle disease it could be (if its one at all) because muscle enzeymes (sp) test came back normal. But there are other test she wants to test..just to go the extra yard. And she told me to stop reading so much stuff on the internet..because I told her I had lyme and lupus from my symptoms and every test came back negative..thus far.

I wouldn't know where or what to search the net for anyway..too many diseases. I will leave that up to the doctors for now. Let them earn their money:+) and they are smarter than me..LOL.

I remember years ago.. I dx myself with HIV (about 20 years ago)..due to a sore throat and weight lost, from what I read on the internet..HAHA..needless to say.. I"M HIV NEGATIVE-AFTER 6 HIV TEST AND 3 HEALTHY KIDS LATER. SO BEWARE OF SELF DX:+)

Thanks for your post.

SleepyBug
Veteran Member


Date Joined Nov 2008
Total Posts : 1097
   Posted 12/2/2008 10:07 AM (GMT -7)   
first of all *very soft hugs* i am so sorry you're going through this. i know how hard it is to wait for potentially scary test results. i agree with karen that a good thing to do right now would be find some way relax-baths? tea? funny movies? anything to keep your mind off of things...

secondly-have you ever had an m.r.i. done? i ask because i have all of the same issues you are describing and also have plaques on my brain like m.s., but i do NOT have m.s. however, the neurologist explained that the plaques can cause m.s. like symptoms like the ones you are describing. i've had several m.r.i's done over the years, though, and my plaques have never changed (i also don't have any of the severe coordination issues or double vision that comes with m.s.)..i don't know if that's what's going on with you, of course, but i did want to mention it because if you have plaques, it would explain all of your symptoms.

i hope that helps a little and might be at least something you could mention to your dr.? i'm sending you warm, healing, calming thoughts. please keep us posted!

~danielle

KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 10:24 AM (GMT -7)   
3 or 4 MRI'S..over 10 years..last one did- last week..absoulty normal..(clean as a whislte) my doctor words:+).

so whats your dx? meds?

thanks!!

RedDiane
Veteran Member


Date Joined Jun 2007
Total Posts : 906
   Posted 12/2/2008 10:39 AM (GMT -7)   
Keo8, I've had fibro for over 20 years. During this time I've had tons of tests done, most have been normal. I don't have any rare diseases. Fibro symptoms can affect almost any part of your body and can be pain, weakness, burning, and lots of other feelings. Try not to worry too much and maybe everything is just fibro. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 11:03 AM (GMT -7)   
Thanks Diane.. I appreciate the words of encouragement.. it helps. But your tongue?and swallowing? :+)

Thanks again!!!

mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 12/2/2008 11:19 AM (GMT -7)   
KE08, I really hope that you can find some peace and stop worrying until your tests come back. You will do yourself more harm by stressing over it so much, adn may read into things that aren't there. It's good that you have a very thorough doctor on your side who wants to rule out everything, but liek you said, let her do her job. I hoep that's all it is is fibro, but if there is somethign else there, worryign won't change a thing. Have you tried the anxiety forums for advice on how to cope at this difficult time? They may have some tips that may help you.

I still don't have a firm dx, and what worries me is that my doctor hasn't ordered any MRIs. There is a history of MS in my family, and I have felt that some of my symptoms were more in line with MS than fibro. I also had some trouble swallowing for a time, and my tongue went numb, as well as some areas of my face and lips. I was very anxious, but I was making the symptoms worse by dwelling on it. When I first had symptoms, I was fixated on every little twinge and muscle tic. But I came to realize that my worryign won't change a thing. If I do in fact have somethign other than fibro, it will show itself eventually. In the meantime, I'm treating myslef as if I do have fibro, which I believe to be the case anyway.

Good luck to you whiel you wait. And please keep posting, we do care. And getting your fears out in the open may help you too. (((HUGS)))
Waiting for appointment with rheumy (March 2009) to get an official dx. waiting, waiting, waiting....
Taking malic acid/magnesium combo, what a life saver! and amitriptyline


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 12/2/2008 11:28 AM (GMT -7)   
KE08,
You're doing what we all do when we don't know what's wrong... It's scary! Please don't beat yourself up for being afraid of the unknown. Just remember that we are all in this together and if you eventually need to jump to another forum here on HW because of a new Dx, it's ok. Most everyone here is pretty nice smilewinkgrin

One day, one staircase, one load of wash, one errand at a time. I stopped trying to be the hare and find the tortoise's pace much easier to maintain. Maybe this might work for you?

(((((((((soft hugs))))))))))
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 12/2/2008 1:00 PM (GMT -7)   
With all the testing they have done and haven't found anything, I wouldn't be that concerned.  Your active imagination is running away with you.
 
I used to have a medical book that told about certain illnesses and their symptoms.  I convinced myself that I was jaundiced and my anxiety kicked it.  Well, of course, I didn't have jaundice so, for my own health, I threw the book in the garbage.  Don't go looking for trouble.  You just might find it!  LOL
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 12/2/2008 2:26 PM (GMT -7)   

Keo...I have had ALL your symptoms, and all the same tests you had....even one for heavy metal poisoning that cost about a bazillion dollars because I was convinced they had missed something.  I think you are frustrated and scared and the anxiety you are feeling is adding to the misery, which is understandable.  If you have had muscle weakness and twitching on an off for YEARS, I'm pretty sure you can rule out some rare "muscle disease.'  Those conditions are progressive and do not go into remissions for extended periods of time. {Rheumy told me this, as I was convinced I had one of those too!)  And...I have the sore, raw tongue thing all the time.  And the throat thing.  I have thought I was choking in restaurants...it has taken me several minutes to swallow a lousy Advil. At one point I had two glasses of water next to my dinner plate so I could 'wash it all down."

Fell better and know that I am thinking of you.  There's alot more to fibro than pain and fatigue and when some of these other symptoms rear their ugly heads, it's difficult to believe another manisfastation that we have never experience before can bring us to our knees!

Donna 


KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 5:02 PM (GMT -7)   
Thanks Mamanan...I really appreciate your advice. Most doctors want to get a MRI done asap to rule out everything like MS etc.. I would get another opinion..I'm sorry your going thru this, because I can certainly relate:+). I do think positive most days, but every now again, I break and fall. BUT I GET UP:+). Fibro's are survivers!! I love this support group here, its like no other. It pulls me through some challenging times! Thanks again and good luck to u too!

KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 5:04 PM (GMT -7)   
Reddan.. your right fibro is a strange illness. I hope I'm just reading too much into all of it. Thanks for your support!

KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
   Posted 12/2/2008 5:08 PM (GMT -7)   
TO EVERYONE THAT REPLIED OR CAN RELATE TO MY POST- THANKS FOR YOUR WARM SUPPORT (((HUGS))). It really means a lot to me!! I often post on other boards to offer my support to them as well. It really helps everyone when we give our opinions and support big or small. ALL of you are really appreciated and are special and kind people.

God bless us all!

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40580
   Posted 12/2/2008 5:51 PM (GMT -7)   
I had the toxic metal test done too. Just to rule everything out. But I was working with stones then and they can have toxic metals in them.

Hope that you are feeling better.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


scardykat
New Member


Date Joined Dec 2008
Total Posts : 1
   Posted 12/2/2008 10:57 PM (GMT -7)   
Hi all,
I'm new but I might be able to contribute something here. I had the same symtoms as you. I do have fibromyalgia, but I knew my symtoms were more than that.

It turned out to be low potassium due to diaretics. I had this conditon for over 4 years and felt like I was dying--literally. Weak muscles, no energy, twitches and stings all over my body. Muscles so tight I could not tie my shoes. My potassium number was 3.5--the very edge of normal, but for me it was too low. In 2004 I went to the hospital for chest pain, but nothing was found. I was told mypotassuim was a little low at 2.4 (that is way low) and given a prescription, but my primary dr. didnt refill it once my numbers increased. I dont know why.Last year I went again to the ER with chest heaviness, racing heart rate and heat rushes from my chest to my face and arms. My ears felt like my ears were on fire. This all happened suddenly. No one could find anything wrong with my heart, Thank GOd, but I wanted answers. So I got my records from the hospital before meeting with the cardiologist and he said a 3.4 potassium could be what was wrong, but he wasnt sure.

I got a script for potassium supplements and I am like a new women. If I miss a dose, I know it that day.

Just to be safe, I had a heart CT which is the best thing since sliced bread. I have NO blockage and no calcium build-up. Offically I have 0 chance of an obstrucive heart attack, but I dont assume to stay that way since I now have diabetes.


BTW, I also have chronic problems with my throat:weak voice, hoarsness, easily choking, feeling like I am on the verge of a soar throat all the time. Part of that was reflux that I didnt know I had. Now I am much better with meds, but still have some of the symptoms which can come from diaretics.

Just my tidbits.
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