I'm so confused...

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retromamax2
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/28/2009 6:19 PM (GMT -7)   
For the past 10 years, on and off, i have been complaining about symptoms to my Dr. Extream fatigue, no libido, weight gain, dry skin, hair shedding, and now,my bones/muscles/joints ache so badly i feel like i have the flu, but i don't, and,  i have had sores in my nose on and off for weeks....they won't go away. They itch and throb.
 
After many years old blood work, and everyone telling me i'm "fine, many wrong diagnosises, many trips to the psychologist, many antidepressants, antibiotics for chronic sinus infections......I started doing some of my own research.
 
I finally found myself at the neurologist, because no one else would help. I couldn't get into an endo, and from what i hear, there arent any rheumo's around. I went to see the wonderful neurologist, and she gave me the dx of fibromyalgia. She gave me cymbalta, and told me to take it to see if it makes me feel better. She told me to see the sleep dr, since im sleeping too much.
 
I went to see the sleep dr., and of course he wanted to do a sleep study, and a nap study.
 
The endocrinologist had a xcellation, and was able to get me in today. I called the neuro, and asked them to fax me my lab work that was taken last friday. I got a copy, an there was a lot of things pending, but the ANA choice was postitive. I know that is a "Lupus" test. I almost had a breakdown. I have no cried in years, bt i was a basketcast at work.
 
All this time I swore it was my thyroid. I went to see an endo in 08, and he told he Hashimotos, but he didn't want to treat it.
 
I went to the endo today, and he told me that it wasn't lupus....not today. Basically, he told me that my diet was crap, i was overweight(i have put 14 pounds on since July) and that i needed to eat well, exercise, and "give in" to sex more often with my husband.
 
I am a 28 year old female. I feel like i'm 80. My 4 year old tells me "mommy, all you do is sit around..." The neuro says it's fibromyalgia, and that there is something going on with my thryroid from all my symptoms, but the endo says i'm just fat. The endo told me not to let anyone give me a dx, because on paper there is nothing wrong.
 
I still have the symptoms, and a positive ANA test, but hes saying i'm just overweight?!?!? WTH? Any light that someone can shed for me? Is my ego just brusied?
 
I'm 28, 5'3'', and 158 pounds..... 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/28/2009 6:40 PM (GMT -7)   
Body mass index (BMI) is a measure of body fat based on height and weight that applies to both men and women.

* Underweight = <18.5
* Normal weight = 18.5-24.9
* Overweight = 25-29.9
* Obesity = BMI of 30 or greater

Your height of 5'3" & 158 lbs gives you a BMI of 28.0, for whatever that is worth.


You haven't mentioned a rheumotologist in your post -- a lupus-aware rheumy is the kind of dr that is qualified to identify and treat lupus. These other drs may have personal options and see 1 or 2 lupus patients, but it is the rheumy who is the expert. One way to find one is to goto lupus.org, find your local chapter, and find out what drs work with them & are on their lists.

While you're finding a rheumy, trying to eat better, getting some movement into your day (walk to mailbox?), and taking the sleep medication can all be helpful in treating some of your symptoms. All of these can "treat" fibro and/or depression.

The sex thing? Fire that dr and find a useful one -- although sex can certainly combat depression and help sleep, under the right circumstances.

Hope that helps a little,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


retromamax2
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/28/2009 6:46 PM (GMT -7)   
I'm just so confused. My DH liked this Dr, cause he was to the point, and wants to treat it with diet. I agree i need to loose weight, that's not so much the issue. The neuro said she understands that i have the motivation to do it, but lack the physical energy to make it happen. My arms are acheing just sitting here typeing. My Bro in law has a PhD in rheumology, he's on the reserch end, and he's employed at Yale(they asked him to come work there, he was at UF) He says it could still be Hashimoto's, and that there is an automimmune something going on for the ANA to be positive....I just don't want to dr. hop to find the answer i want to hear, and not the truth...KWIM? I will go back to see the neuro next week like i'm scheduled, but i'm going to xcel my sleep/nap study....

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/28/2009 7:08 PM (GMT -7)   
Your endo is a JERK! And as ignorant as any MD who never should have been allowed to graduate from medical school can possibly be!! Lynnwood is right...fire the bum and get a real doctor!! mad

Your BIL is correct; the positive ANA means something autoimmune is going on. It does NOT necessarily mean lupus, although that is one of the many indicators of lupus. There could even be MULTIPLE autoimmune processes going on....although for your sake I certainly hope not! Fibromyalgia is frequently associated with autoimmune diseases, so that diagnosis by your neurologist is just one more indication that you have some sort of AI issue.

It sounds as though you are pretty sure you have Hashimoto's thyroiditis....let me tell you that's nothing to play around with! I went undiagnosed for more than a decade after I developed Hashi's. I know I must have had it as a teenager, because I was always the coldest person in a room and wore a coat in the summer (and I live in Southern CA!). I was always tired, too. And I started to gain weight without overeating.

I was finally diagnosed in my early thirties after my thyroid swelled up and pressed on my windpipe, making it hard to breathe. My TSH was over 90! And my poor thyroid is basically dead now.

Please find a decent doctor and have a full thyroid panel run, as well as blood tests for the autoantibodies for lupus, RA, and even celiac disease if you can talk him/her into it! See the following article if you want to know why: www.umm.edu/news/releases/zonulin.htm.

Good luck with everything! Please keep us posted!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/29/2009 9:42 AM (GMT -7)   
Please make an appointment to see a rheumatologist. In the meantime, don't listen to all the other well-meaning doctors who are not rheumatologists. You wouldn't go to a urologist to determine whether or not you have heart disease. And like Lynnwood suggested, take good care of yourself, eat well, and get plenty of rest. Take a look at the Resources page at the top of the lupus forum and you'll find some good info on preparing for an appointment with your rheumy. It's important that you keep a journal of your symptoms and type up a complete medical history for your first appointment.

Good luck finding someone.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/29/2009 11:52 AM (GMT -7)   
See a rhumy, see 3 or 4 if you have to until you get some real insight. Also I am in no way trashing dear heart but it sounds like he likes the dude because his (to the point) was hey loose weight and have sex with your DH. Hey I got no problem with the weight and the sex but it sounds like a total cop out to me. They seem to be migrating towards what makes life easier for them. I'm sorry I don't know your DH but it's your body don't compromise.
hugs
carol



systemic sclerosis sine scleroderma,sleep apnea,Megaloblastic anemia
what ever that is.
 
 


retromamax2
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/29/2009 4:33 PM (GMT -7)   
all my labs are fine, except my ANA choice....he said"you look good on paper- your healthy" today the butterfly rash appeared...but it went away by this evening...is that normal? It was somewhat bothersome. My boss pointed it out to me....

My husband and I are at odds now. I told him I had the rash and he told me "the dr said your healthy. Eat right and things will change. Give it time..."

Grrrr.........i just want to scream! The sores are back in nose after being gone for 3 days....and they hurt!

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/29/2009 5:21 PM (GMT -7)   
I'm not a medical doctor, but positive ANA, butterfly rash (yes, it can appear and disappear in a matter of hours for me), plus sores in your nose....those are all lupus-y symptoms. The fatigue you describe, lack of energy, hair loss, all-over aches and pains, etc., all fit that same picture as well.

When you say there are no rheumatologists around, what do you mean? Within 10 miles, or 100 miles? Please try to see a rheumatologist even if he/she is located a bit out of your way (even if he/she is a LONG way out of your way)!

And remember, it's your body and your health.....you must make these decisions, not your husband.

Good luck!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


retromamax2
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/29/2009 6:13 PM (GMT -7)   
What if they tell me the same thing? Overweight, and "depressed"? Do I keep going until I'm diagnosed? I don't want to keep going to a ton of Drs until i hear what i want...KWIM?

My son's teachers daughter just got the lupus diagnosis at 16, and she invited me to the support group next week. I'm going to go. I'm not aware of any rheuologist in the area....75 miles....

and i just found out my insurance is being cancelled in December...

Is it normal for the rash to hurt or be uncomfortable?
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