DX info please (aka Throwing speghetti at the wall and seeing what sticks)

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sandur
New Member


Date Joined Jun 2013
Total Posts : 18
   Posted 6/28/2015 4:24 PM (GMT -6)   
Hi All. Not Dx'ed but dr doing half hearted dx mission.

I have not felt well for a long time. I had a headache start in February 2014 and it is constantly there with no headache/migraine free days/ hours/ minutes or seconds. Even through three surgeries and IV meds it has remained (I think I will call my headache Old Yeller). I also have a dull ache in my right ear (like what you get when you start to get sick) with a discomfort in my throat on the right side when I swallow. This ear/throat thing started April 2014. I am tired and exhausted from the moment I get up until I go to bed. I don't sleep well at night, some nights awake numerous times others I don't recall waking but wake up exhausted. I have had numerous blood work done.

For some reason the dr ran a ANA test. Mine came back positive at 320 with a homogenous pattern. Dr ran a dsDNA and it came back negative. She has referred me to a internist and I will see that Dr in late July or August.

SO I guess why I am posting is can anyone help me out her. Has anyone had these symptoms and what has helped or gave relief.

I have also had two surgeries this year on my left elbow. Since the surgeries I have a stiffness/soreness/discomfort like feeling in the elbow joint. No swelling of the joint. The Positive ANA was after the first surgery when I had swelling and fluid around the incision and the incision wasn't closing. Finally the first surgery this year healed but a seroma developed at the elbow which was why I had the second surgery this year.

I also had a four point salvia test done in July 2014 and I had at that time low cortisol in morning, lunch and bedtime and normal cortisol at supper time. I have an increase of fatigue in mid afternoons currently.


I have no clue whats wrong with me but I want to feel better and feel more like I did before all these weird things started to happen to me.

My drs have seemed to wrote me off insisting I should take anti-depressants, have botox injections for headaches, take upper in the morning to combat the fatigue and I feel that they have wrote me off. I just need some relief.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 6/28/2015 5:12 PM (GMT -6)   
Once you have a positive ANA you should see a rheumotologist. ANA is an indication that you may have some kind of auto-immune disease, and rheumatologists are the ones who diagnose and treat auto-immune diseases such as Lupus. GP's, surgeons, and internists are not very extensively trained and certainly not experienced in these diseases.

Also, check out the Diagnosing Lupus link below -- Lupus is generally diagnosed by determining that you have 4 or more of 11 symptoms.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

sandur
New Member


Date Joined Jun 2013
Total Posts : 18
   Posted 6/28/2015 5:29 PM (GMT -6)   
Thanks for the response Lynwood

I will ask the dr at my next visit about sending me to a rheumatologist. I am fearful that in this city that's really a one horse town when it comes to medical needs I will have to see the internist to pass go and collect a referral for the rheumatologist.

I ve checked the symptoms but its sketchy whats caused by what and whats related to what. I have fatigue, headaches (dr says its a side effect of med), elbow joint pain (dr says its related to the surgery in the area), some hair loss and thinning of forehead but it seems to go in cycles (not large patches just a lot of hair seems to come out dr says that's just getting old, I'm 39), back ache on the left side (that doesn't seem to be relieved by anything- never brought this up with the dr I feel defeated and deflated going and complaining about the same things over and over), anemic (cant get number up despite taking supplements- dr doesn't appear to be worried about this), tightness in the feet and ankles like there is fluid retention but feet ankles are swollen where I cant wear my shoes (reaction to gabapentin according to drs).

Stacey

Post Edited (sandur) : 6/28/2015 5:56:36 PM (GMT-6)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/28/2015 10:17 PM (GMT -6)   
The waking up a lot during the night could be due to sleep apnea. Ask for a sleep study too.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 6/30/2015 7:30 AM (GMT -6)   
It seems that your ear and throat symptoms could be related to your headache. Like something could be going on with your inner ear, perhaps an infection. If your regular dr is not helping you out, go see an ear nose and throat dr. Your dentist should be able to recommend or refer you to one if needed. It's hard to get a good night's sleep if you're constantly in pain. Maybe you need some physical therapy for your elbow. I broke my elbow at age 11 and had to do particular exercises to loosen up the joint and rebuild lost muscle. I hope you are able to get some relief soon!
Diagnosed with SLE lupus October 2014.

sandur
New Member


Date Joined Jun 2013
Total Posts : 18
   Posted 6/30/2015 9:36 AM (GMT -6)   
couchtater said...
The waking up a lot during the night could be due to sleep apnea. Ask for a sleep study too.



I had a sleep study done in February 2015. No sleep apnea. (I almost wish it was that easy to dx. )

sandur
New Member


Date Joined Jun 2013
Total Posts : 18
   Posted 6/30/2015 9:44 AM (GMT -6)   
Becky20 said...
It seems that your ear and throat symptoms could be related to your headache. Like something could be going on with your inner ear, perhaps an infection. If your regular dr is not helping you out, go see an ear nose and throat dr. Your dentist should be able to recommend or refer you to one if needed. It's hard to get a good night's sleep if you're constantly in pain. Maybe you need some physical therapy for your elbow. I broke my elbow at age 11 and had to do particular exercises to loosen up the joint and rebuild lost muscle. I hope you are able to get some relief soon!



Seen an ENT nothing wrong with my ears except that I use q-tips and they were very dry. Since stopped using q-tips and no change. HE felt my throat was from acid reflux but I don't have the symptoms of acid reflux. Was taking Tecta for the acid reflux but stopped after 5 months, restarted taking Zantac by prescription two times daily. Have had a Barium swallow as well as a CT of the throat, no abnormalities have been found. The ENT wasn't interested in further investigating the issue.

When I go back and see the Neuro for my headaches (to switch meds) I will ask him about the ear pain being related.

Like my title states I am just throwing spaghetti at the wall and hoping that something sticks so I can get rid of this pain and reduce my frustration with going back to my doctor over and over looking for answers when they have none and just shrug their shoulders.
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