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baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 2/1/2013 3:33 PM (GMT -6)   
I have been having health issues for quite some time. Been trying to find a diagnosis since August.

I have the following symptoms (not all my symptoms just some of the worst):

Fatigue (extreme)
General feeling of not well
Weakness
Joint Pain
Muscle Pain
Chest Pain
Shortness of Breath (with little or no exertion)
Rash on face
Sensitivity to Sun/Flourescent lighting
Blurry Vision
Headaches
Dry eyes/mouth
Difficulty concentrating/Memory Issues


In the last month the following have developed

Swelling in Fingers, wrists, knees and especially the ankles
Frequent Urination (every 1-4 hours)
Blood in Urine (per urinalysis) (They thought I had a UTI but tested negative for that)

Diagnosis that I have received

Diaphragm Dysfunction
Fibromyalgia

The Pulmonologist said the Diaphragm weakness can not be caused by Fibromyalgia - originally he suspect ALS now thinks either a Connective or Mixed Connective Tissue disease. He mentioned Lupus.

Yesterday I finally got my referral to a University Hospital Rheumotologist. He also seems to be leaning toward a auto-immune issue. They are rechecking my ANA. The doctor said where I live they use a newer cheaper DNA test that isn't always as sensitive and they still use the older version there because it is more accurate.

I have had the following tests:

CT Scan of Chest (twice) normal
Stress Test (all they said was exercise intolerance)
EchoCardiogram (I was told this was normal by Cardiologist however, yesterday the dr said it indicated I was
borderline Pulmonary Hypertention. Doesn't feel it should be causing my symptoms but something that may need to be watched)
Pulmonary Function Test - Diaphragm Dysfunction
Brain MRI - normal
EMG/NCS on legs
Sleep Study - showed sleep apnea during REM sleep (Neurologist said a second study should be done and dropped that)
Cervical Spine MRI - arthritis (but was told it did not explain any of my pain)
CT Scan of Abdomen/Pelvis - normal
Numerous Blood Test


Next week they are performing an EMG on my Diaphragm which I have to return to the University Hospital for as no doctors in my area perform this type of EMG. They are hoping it will help explain the weakness there.

Now awaiting test results, I return to the Rheumy in about 6 weeks. Hoping they call with results before then as the waiting is driving me crazy.

I have been on sick leave since just after Labor Day and my leave is running low so hoping they can figure this out before it runs out.

Post Edited (baccsurfs) : 2/1/2013 1:42:50 PM (GMT-7)


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/3/2013 12:10 AM (GMT -6)   
Hi and welcome to the forum, sorry that you are having so many issues and can't get a firm diagnosis.

I hope that your Rheumy contacts you before six weeks. Lupus is just so hard to DX. I've had lupus for 25 years but it took my multiple Drs 13 years before I was Offically Dx'd with lupus.

I wish you the best and that they begin to treat your symptoms.

Hugs,
Barbara

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 2/8/2013 1:59 PM (GMT -6)   
The EMG of my diaphraghm showed no muscular or nerve reason for it. I am short of breath with little to no activity.

I was able to look at some of my test results online. ANA came back negative. However, I did have a high platelet count. I also Red Blood Cells, Ketones and Bacteria in my Urine.

I don't return to the doctor until the middle of March so have no clue what all of this means.

Thanks for responding Barbara - My first name is also Barbara.

Post Edited (baccsurfs) : 2/8/2013 1:03:32 PM (GMT-7)


Morti81
Regular Member


Date Joined Sep 2011
Total Posts : 186
   Posted 2/9/2013 7:31 AM (GMT -6)   
Have you been bitten by a tick or biting insect and considered Lyme disease?

Cat53
Veteran Member


Date Joined Jul 2012
Total Posts : 672
   Posted 2/9/2013 4:24 PM (GMT -6)   
Morti's question is worth considering. A lot of your symptoms sound like ones many Lyme sufferers experience. It would be worth your time to google it and see what they have to say on the Lyme board. There is a lot of good information on there.

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 2/10/2013 9:07 PM (GMT -6)   
I haven't been bitten by anything. Though they did test for Lyme and West Nile back in September. All negative.

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 2/15/2013 1:13 PM (GMT -6)   
I was back to doctor again Wednesday as my shortness of breath is happening more and more often while just sitting or laying down and the swelling in my ankles and knees in increasing.

They had ran the following:

EKG - Normal
Chest Xray - Normal
NT-PRO BNP - Normal (no heart failure)
D-Dimer - Elevated but it has been elevated for about 6 months

The doctor gave me a few options:

High Dose Steroids - which would mask my symptoms and make it harder to get a diagnosis - so I passed
Steriod Inhaler - might help with the shortness of breath
See Pulmonologist - I went with this option

Family doctor mentioned the possibility of ALS or MS. Though the brain MRI was very clear and did not show signs of MS Pulmonologist has also suspected these 2 items. He also suggested CIPD or Connective Tissue Disorder (Lupus or Mixed)

I am always fatigued. Now I am just tired of dealing with all this and frustrated. Sometimes I feel like they don't really hear me when I explain everything I am experiencing. As scary as some of the potential diagnosis has been at least these two doctors have been willing to tell me what they suspect it might be.



As scary

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/15/2013 4:08 PM (GMT -6)   
I totally feel for you. I too had become very frustrated with drs. It took an entire yr for my diagnosis of Lupus. You are experiencing a lot if not almost all the same signs. Going thru massive amts of testing, prodding can get too you...hang in there and the best advice I can give you is make sure the drs HEAR you...and be persistent. Hope you get some answers and help real soon!

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 2/15/2013 4:50 PM (GMT -6)   
Thank you Lorik. I feel so frustrated. I think a lot of it is I am unable to work due to the fatigue, weakness, etc. and am running out of leave time. My income is the main income and we need it. The last few days have just seemed very difficult. I needed to vent.

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/15/2013 8:50 PM (GMT -6)   
Vent away!!:-)
I was also on short term disability with FMLA and had to use every last minute of it. Had too beg for dr to write me back on cause I too needed the income. Sometimes I felt like screaming at the drs...especially one neurologist who was under the impression that It might just be psychological...HAH .,that was the last I saw of her.
I have only been on this board a short time but Barbara there are a lot of people who KNOW what you are going thru and there is a lot of good information to be found...Please stay positive and I wish you the best!

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 3/13/2013 6:39 PM (GMT -6)   
back to Rheumotologist tomorrow - sure hope they have some info. One thing they told me at the last visit was that was the Echocardiogram that I had in September showed I am borderline Pulmonary Hypertention though I shouldn't be experiencing symptoms from it. What scares me is the doctor who ordered and read the test told me it was normal. The Pulmonologist wants me to ask the Rheumy to order a muscle biopsy. He feels my shortness of breath is related to the diaphragm muscle and this needs to be checked out.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/13/2013 7:11 PM (GMT -6)   
Interesting....

I hope the rheumy has some answers for you.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 3/15/2013 7:17 PM (GMT -6)   
The Rheumy says Undifferentiated Connective Tissue Disorder.

The following tests have been ordered:

2nd Echocardiogram on Monday - as long as it shows borderline Pulmonary Hypertention this test will be repeated probably every 6 months or so.

Muscle Biopsy

Colonoscopy

Cystoscopy

another Pulmonary Function Test (as long as the diaphragm muscle is involved this one will probably be repeated also)

They also of course ran more blood tests.

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 3/15/2013 9:12 PM (GMT -6)   
I know how you feel from not having a diagnosis. It helps if the Dr's agree that something is wrong with you even if they cant give you a true diagnosis. My Neuro, Rheumy,PCP have all suggested Connective tissue disorder but yet to truly diagnose it. I hope you can et your answers soon and to get treatment ASAP!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 4/23/2013 8:42 PM (GMT -6)   
They have said it is Undifferentiated Connective Tissue Disorder. They have put me on Plaquenel.

The 2nd Echocardiogram came back normal
Cystoscopy - normal
Colonoscopy - 1 small noncancerous polyp
Muscle Biopsy - preliminary results are normal (though Rheumy said that does not mean there is nothing wrong with the muscles) I thought something might show on this. My muscles ripple at times.

Rheumy said might send me for a muscle MRI will discuss at my next appointment in a little over a week. Does anyone know if a muscle MRI also shows the joints? I have swollen ankles, knees and fingers. (My legs actually look much bigger than they did a few months ago so perhaps swelling there as well). I have wondered if there is arthritis in my joints. I know I have it in my neck as it showed on the Cervical Spine MRI.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/23/2013 11:21 PM (GMT -6)   
I think the bones will show up too in a muscle MRI.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

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

Angelsway
Regular Member


Date Joined Jul 2012
Total Posts : 54
   Posted 4/27/2013 1:31 PM (GMT -6)   
I stay away from the prescription meds. I will do so when my staying away from flare foods and taking the proper vitamins. I take 3grams of omega 3 fish oil, 3 grams of evening in primrose, 2 hyaluronic joint complex,40mg. of Lutein and 5mg Astaxanthin a day. I also take Jarrows Neuro optimizer to help with the brain fog. This keep my pain down to a rumble and my eyes are getting better all the time. Before you do something like this you need to check with you doctor or pharmacist to be sure they won't interfere with your prescription meds. Before starting this...I was at a constant 6-8 and now I am at a 2 most of the time with an occasional 4-6 if I eat what I shouldn't. Just because this works for me...doesn't mean it will work for you. It took me a year to get to where I am today. The doctors are amazed and say that my vitamins are doing the same as the meds would without the side effects. Check each one of the supplements on the web in conjunction with lupus and sjorgrens...you will be amazed!

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 5/5/2013 11:47 AM (GMT -6)   
Was told the joints would not show if Muscle MRI and the doctor decided not to perform at this time. They did perform xrays on my ankle, knee and hip. I return in 3 months. I have developed a new annoying symptom: I feel like there is something between my toes!

Post Edited (baccsurfs) : 5/6/2013 3:42:13 PM (GMT-6)


baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 6/5/2013 3:57 PM (GMT -6)   
Xrays on hip, ankles and knees came back with no signs of arthritis. I keep getting new symptoms. Now my feet are swollen. I bought new shoes because of the swelling in my ankles, the shoes I bought in the fall were too tight. Now my new shoes are feeling tight. I went out and bought thinner socks. When I take off the socks you can see the imprint of the socks all over my foot. I also get the sensation of raindrops hitting me even though it isn't raining (I am usually indoors!)
Barb

Restrictive Airway Disease, Multilevel Degenerative Disk Disease, Undifferentiated Connective Tissue Disorder

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/6/2013 1:42 AM (GMT -6)   
Talk to your doctor about being put on a water pill. I used to swell like that a lot until I went on lasix.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

Nana+4
New Member


Date Joined Apr 2013
Total Posts : 8
   Posted 6/8/2013 10:09 PM (GMT -6)   
Hi, I'm new to this forum. I have a question, can you have Lupus without having the butterfly rash? I have Sjogrens and an UD connective tissue disease. I don't have a Rheumatologist but I am going to get one. I have most of the other symptoms of Lupus.

frustrated KP Pt
New Member


Date Joined Jun 2013
Total Posts : 4
   Posted 6/9/2013 12:36 AM (GMT -6)   
Nana +4, what is this butterfly rash you mention?
Tam
51 yr old female
Dx-chronic iretractable pain, degenerative bone disease, polymyalgia rheumatica (dx at 35 years old), peripheral neuropathy, costchondritis,
Subarachnoid hemoragic stroke on April 18, 2013 with no aneurysm or trauma: elevated Protein C and A 3, protien in urine, vitamin D deficiency Nephrotic Syndrome ? Vascular Lupus? Dx pending

baccsurfs
New Member


Date Joined Dec 2012
Total Posts : 15
   Posted 6/9/2013 10:19 AM (GMT -6)   
I think from what I have read you can have Lupus without the rash. Everyone has different symptoms. A lot of Connective Tissue Disorders have a lot of the same symptoms making it even more difficult to diagnose them.
Barb

Restrictive Airway Disease, Multilevel Degenerative Disk Disease, Undifferentiated Connective Tissue Disorder

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/9/2013 11:41 PM (GMT -6)   
I have lupus but no butterfly shaped rash, instead my whole face turns bright red.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

Aerayna
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/23/2013 2:51 AM (GMT -6)   
I am new to the group. I am experiencing the same problems you are and have gone through numerous tests beginning in 2005.

EMG, several MRIs, CT scans, ANA (twice and both times, the first was positive but a second negative), EKG, EEG, colonoscopy, EGD, western blot Lyme Disease test, ultrasounds, numerous blood tests, urine tests, glucose tests, heart monitor, test for Epsteine-Barr, and the pressure points for fibromyalgia.

I am going for a hyda scan next week. I am 37 years old with symptoms since 12. Began with my lumbar and neck. I threw my back out for the first time at 12 but had recently been beaten up so we assumed it was from that.

I've been bitten by many ticks since very young, and I have considered Lyme.

My symptoms are: widespread pain - stabbing, burning, pinching, dull achy, sudden spasm, contraction like, cramping, and one I can only describe as a spike being driven through my spine -, constantly sweating awake and sleep - wake up soaked, minor tasks such as walking or dishes and even showering (yes I sweat in the shower) -, tiny one or two bump rashes, widespread itching (oh the constant itching! Worse at night), nausea, motion sickness, feeling like bugs crawling on me, tingling, shocking pain, swelling hands, feet and ankles, joint pain, fog, memory issues, anxiety, depression, fatigue, feeling like falling asleep for a split second then,jolted awake all day, loss of balance, tinnitus, grinding and popping in joints especially knees, knee cap getting stuck, abdominal pain, chest pain, loss of breath, dizziness, very sore feet, sore muscles, mouth sores, bright red face especially when over exerted or in sun, pain and feeling like something is on my eye, and peeling finger tips.

My diagnoses are fibromyalgia, degenerative disc disease, rheumatoid and osteo arthritis, sciatica.

A year ago I became violently ill with sudden stomach pain, feeling of blood draining from my face, sweating, nausea and horrible diarhea. The doc thought it was diverticulitis but the MRI was negative. Then ulcer, hernia or gall bladder problems. I basically stopped eating most everything because everything made me sick. This went on for a year. In March I got a UTI which became a kidney infection because I had to keep trying new antibiotics due to supposed allergies, then a month ago a kidney stone, then last week went to ER for ripping groin pain that we thiught was kidney stone hadn't passed. They found sliding hiatal hernia and kept me for 2 days. Did ultrasound because the doc assumed gall bladder problem and said hernia was not enough to cause this many problems. The colonoscopy showed 6 bright red irritation spots that were biopsied negative. And that's where wr are now.

I had a great aunt with lupus and I am convinced it's what I have but rheumys seem bent on finding something else. Currently on an anti depressant Effexor XR, Norco, Benadryl, tordol, and tigan.

I have pain all over my abdomen and groin. Each pain is different like mid area poking, left like contractions, creeping cramping left mid to back and up, very sore and useless shoulders, and random stabbing pains all over abdomen. Plus all over itching that gets worse as night. Also best as I can describe them, pain seizures and restless legs and tremors. I baffle every doctor and ER staff I see. I've seen so many that I've lost count. Most times they give up or give the old "it's just fibromyalgia" excuse and then prescribe pain killers.

I'm nit just going insane from the pain and sickness and itching. It's driving my family crazy. My marriage is on extremely rocky ground and I am so tired. Like the energy and strength has just been sucked from my body. I use a cane or wheelchair. I'm trying so hard to be patient with the doctors but I'm certain it's lupus and they don't want to listen. I'm sorry this was so much. I'm just going out of my mind. Even my brain has become useless. Things I used to gave no problem with like spelling and vocabulary, I've lost. Driving is a nightmare because I forget how to get places. I don't remember things from yesterday and even just today. I lose my words in mid sentence, forget the names of things and have to describe them instead, and things I do every single day like knitting, I suddenly forget how to do.

Please tell me if this sounds like lupus to you. I'm sorry. I'm just so very tired of this. Thank you for listening.
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