Undiagnosed Symptoms Community
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Avatar universal

Just too many things going wrong.

I am praying that someone will be able to help me.

I am a 32 year old female that was diagnosed with Type diabetes at age 15. I have been on insulin from then and for the last 4 or 5 years I have been on a pump.  My HBA1C Levels have been good so I have no issues with my diabetes as far as I am concerned.
I was diagnosed with Poly CysticOvarian Syndrome...I have never had normal periods and I have always had to deal with acne.  In order to conceive my first two kids I did like 5 cycles of Clomid with each.   All pregnancy's were normal.
About 5 years ago, I just started with shortness of breath.  It felt as though an elephant was sitting on my chest and I couldn't get the deep breath in.  In order to get a deep breath in I would have to try and force a yawn and after several attempts at forcing the yawn I might get lucky as to drawing the breath in.  I have been to the emergency room on numerous occasions and because my pulse ox was always 99 they would basically dismiss me.
I also have most relief lying flat on my back with my arms extended so I feel like I am opening up my rib cage.  When I lay on my side I can barely breathe because it is like my rib cage is collapsing and can't expand to get air in.  They have tried me on advair or singular and stuff like that because they said I have asthma (diagnosis which I still don't believe) but it doesn't work or help me out.  

I was referred to the cardiologist and was told I have Mitrial Valve Prolapse...(Which till today I still don't believe that diagnosis) and was put on lopressa but the medication would drop my blood pressure so low that I couldn't stand up.  So that medication was stopped.  After that they told me I was mental and had anxiety (zoloft, adavant and the one people always get high on), in which I think they told me that because they didn't know what was going on.

I am always tired and the things I use to do its kinda hard to do them anymore because I just have no drive, stamina or energy to follow through.  The only other medicine I was on in addition to my insulin was the birth control pills and my doc decided that I should stop them, but I got pregnant that very month...considering I had PolyCysticOvarianSyndrome and paid to have my first two kids, I guess that was a blessing.  I had another baby and she just turned 2.  I am now on Mirena which is a kind of IUD.  My hair is also brittle and combs out no matter how much I do treatments for it.

Over the last few months I have started with balance problems in addition to the shortness of breath.  What would happen is when I get up I would have the "almost" blackout effect as I would call it, its like I am so disoriented that I just have to hold on, it is not the roller coaster feeling that comes with vertigo but it lasts for about 30-40 seconds and I just have to catch myself so I don't fall.  This has started happening more frequently, when I bend down to wash my face and get back up or bending over to brush my teeth or even just closing my eyes, I sway all over the place.  Its like shutting off an electrical breaker and cutting it back on quickly, so there is like a glitch in the system which cause just a temporary loss of power and then it resumes where it left off.  I also get the dots of flashing lights when this happens and it honestly is just a bad feeling of the constant rocking and swaying motion.

I went to my doc for my pap smear a few weeks ago and I told him what was going on and he was like noooooo this is not normal.  They referred me to the Cleveland Clinic over there in Florida. (I am from the islands so medical facilities/ resources aren't the best).  When I went there I had a neurology consult and a cardiology consult.  They did a brain mri and a few other tests.  One of them showed that the pressure in my ears was abnormal and the doctor told me to do therapy to "train my brain" to deal with the swaying.....at which I asked him if I was to just live with it?  His response was basically yes.  I was like but I have not lived with this all my life, and I understand the concept of developing a disease and treating it but I know the cause of my diabetes, my pancreas stopped working.  BUT to tell me that I just need to accept it and live with it is unacceptable because we still don't know what is causing it.  I went up to International patients department who scheduled all my appointments etc and busted out crying and requested a second opinion.  He gave me 12.5mg a day of hydroclorothiazide a day and although it has help the swaying some the medicine makes the shortness of breath a little harder to deal with because when I take in the breaths it causes the area around my heart, the bone included to hurt.  I am trying taking the medicine every other day because it is a capsule and honestly I don't think it is helping effectively.

International Patients sent me to the ENThroat doctor and he recommended some other balance tests etc including a tilt table test but  everyone seems to be missing something because I feel all of the symptoms I am having are tied together.     It has been 5 years now that I have been dealing with this and it is taking a serious toll on me.

As it stands all my symptoms are:
Rocking and swaying
blurry vision on and off- one day I can see clearly and others its blurry
lack of energy
no stamina
shortness of breath
sharp pains when drawing a deep breath
decreased libido
hair breakage
blacking out with out actually blacking out
and I usually have a minty feeling within my head, somewhat tingly

Medications I am on:
Novolg insulin in the pump- no more than 45 unites per day that includes basal and bolus doses.
Roaccutane- 20mg a day to clear up the acne finally- I have been on it for the last 7months and the only side effect was dry lips.
Mirena- inserted in 2009- has a 5 year duration
Hydrochlorothiazide- 12.5 mg every other day

I have just finished my roaccutane treatment and this is the first time since I was about 14 that my skin has been clear.

Confirmed Diagnosis:
Diabetic-Type 1
PolyCysticOvarian Syndrome

RESULTS from Cleveland Clinic Tests:

MRI BRAIN and IAC's without and with gadolinium- Their impressions were:
1. No enhancing lesions post gadolinium.
2. Mildly prominent cisterna magna. Slight asymmetry of the lateral ventricals.
3.  Non specific UBO's in the white matter with the largest being about 4-5mm in the medial left temporal lobe. This could represent demyelination, vasculitis, migraine, a normal varient or ischemic change.
4.  No evidence of mass or enhancing lesion involving the IAC's on either side.
5. Left maxillary sinusitis with hypertrophy of the turbinates.

Auditory Brainstem Response (ABR) and Electrocochleography ECoG:
Their impression:
1.  Today's results are most consistent with the normal transmission time through the lower auditory system in both ears; there is no electrophysiological evidence of the VIII nerve or pontine level auditory pathway lesions.
2. ECoG examination was ABNORMAL in both ears; presenting electropsysiological evidence of increased labyrinthine pressure in BOTH ears.

TESTS they have recommended which are not scheduled until the middle of September:
1. Audiogram and eng
2. Tilt Table test

I know this was long winded...but any help/input would be GREATLY appreciated.  Any recommendations for tests, the type doctor to go to, anyone who has experienced this type thing, anyone who knows of anyone who has experienced this type thing......JUST HELP PLEASE.  

6 Responses
1613542 tn?1366472143
Have you been checked for autoimmune disease/disorders? You have a lot of symptoms that indicate one. Here is a check list that you may feel helpful http://www.thyroid-info.com/articles/autoimmune-checklist.htm You can have flare ups for years and it is never caught because all labs differ on what a normal range is for the TSH level. Best wishes.

Avatar universal
I believe there are many different things happening to you but the most concerning is the symptoms described that seem to be cardiac or vascular in nature.  Being a diabetic for so long, predisposes you for significant cardiac problems.  The most concerning is the shortness of breath and the feeling that you have to expand the rib cage to relieve pressure within your chest.

"I also have most relief lying flat on my back with my arms extended so I feel like I am opening up my rib cage.  When I lay on my side I can barely breathe because it is like my rib cage is collapsing and can't expand to get air in." and " when I bend down to wash my face and get back up or bending over to brush my teeth or even just closing my eyes, I sway all over the place."

These sound like perfusion problems e.g., blood flow.  Lying on your back with your arms out changes the intrathoracic pressure, relieving the feeling of compression.  Also you stated: "It felt as though an elephant was sitting on my chest and I couldn't get the deep breath in."  That is "textbook" or a cardinal cardiac sign.

Pulmonary or lung issues relating to shortness of breath are usually worse by laying down and people feel the need to sit up and forward to breathe.  That is opposite of what you seem to be experiencing.

Right-to-left shunt
From Wikipedia, the free encyclopedia
A right-to-left shunt is a cardiac shunt which allows, or is designed to cause, blood to flow from the right heart to the left heart. This terminology is used both for the abnormal state in humans and for normal physiological shunts in reptiles. Commonly found in turtles.

Human medical

A right-to-left shunt occurs when:

there is an opening or passage between the atria, ventricles, and/or great vessels; and,
right heart pressure is higher than left heart pressure and/or the shunt has a one-way valvular opening.
Small physiological, or "normal", shunts are seen due to the return of bronchial artery blood and coronary blood through the Thebesian veins, which is deoxygenated, to the left side of the heart.

The most common cause of right-to-left shunt is the Tetralogy of Fallot, a congenital cardiac anomaly characterized by four co-existing heart defects. The four defects include:

Pulmonary stenosis (narrowing of the pulmonary valve and outflow tract, obstructing blood flow from the right ventricle to the pulmonary artery)
Overriding aorta (aortic valve is enlarged and appears to arise from both the left and right ventricles instead of the left ventricle, as occurs in normal hearts)
Ventricular septal defect (an abnormal hole between the ventricles)
Right ventricular hypertrophy (thickening of the muscular walls of the right ventricle, this is a result of the increased amount of work the heart has to do)

I think this is something worth looking into:  http://en.wikipedia.org/wiki/Platypnea

From Wikipedia, the free encyclopedia
In medicine, platypnea refers to shortness of breath (dyspnea) that is relieved when lying down, and worsens when sitting or standing up. It is the opposite of orthopnea. The word is derived from the Greek platus (= flat) and pnoia (=breath).


left atrial thrombus
left atrial tumors
pulmonary A-V Fistula
Platypnea is due to either hepatopulmonary syndrome or an anatomical cardiovascular defect increasing positional right-to-left shunting (bloodflow from the right to the left part of the circulatory system). These defects include rare syndromes in which the venous blood from the liver does not pass through the lungs, or if venous blood from the portal circulation reaches the inferior vena cava without passing through the liver (Abernethy malformation, type 1).

Insufficiency of abdominal muscles causes lower diaphragm position and dyspnea. In clinostatism, abdominal organs push the diaphragm in its normal, upper position, reducing the respiratory effort.
Please keep me posted!
1756321 tn?1547098925
Based on your symptoms, medical conditions and drug treatments: biotin deficiency, vitamin A excess, magnesium deficiency are good possibilities.

Accutane side effects list biotin deficiency and hypervitaminosis A (too much vitamin A). Accutane is a form of vitamin A. Biotin deficiency causes hair breakage. Too much vitamin A causes many symptoms but include increased changes in skin, hair, and nails, dizziness, fatigue, blurred vision, elevated cerebrospinal fluid pressure (intracranial head pressure).

Low magnesium is common in conditions linked to chronic inflammation, including heart disease, hypertension and diabetes.  Hydrochlorothiazide can also lower blood potassium, sodium, and magnesium levels.

Magnesium deficiency is a known cause of Mitral Valve Prolapse and asthma. Magnesium deficiency symptoms are many but include feeling off balance/vertigo, blurred vision on and off, shortness of breath/unable to take a deep breath, no stamina/energy, wheezing (may not be full blown asthma symptoms), low libido. Magnesium also plays a significant role in the proper function of the inner ear. Only 1% of magnesium in the body is actually found in the blood and only 0.3% is found in blood serum, so clinical blood serum testing may not successfully identify magnesium deficiency.
Avatar universal
Hi, I know u tried everything but try this;
u will need a vitamin store or online for a decent price;
buy Pro-biotics enough to take 200 BILLION cultures daily for 2 months, cut to 100 billion x2 months, 50 billion x 2 months and stop and stay at 25 billion daily
In your immune system which is in your gut there should be TRILLIONS of probiotics but meds such as antibiotics kill bad bacteria AND KILL good bacteria needed for life, G.I. functions, skin, acne, hair etc.
you should see a difference in a week but stay on them
good luck
Avatar universal
I have had the shortness of breath for the last five years and some....so that has been a continuous problem for me.
They have me going to do a tilt table test that I think addresses the blood pressure at various stages between standing up and laying down.
The dizziness/swaying only started occurring about 3 months ago maybe.  
I just finished my Roaccutane cycle last week, my skin was horrible and I tried everything from skin care systems to antibiotics and creams etc prescribed by a dermatologist.  The Roaccutane was the only thing that worked, the only side effect that I experienced to my knowledge was the dry lips.
The Cardiologist at Cleveland clinic said that the MVP wasn't an issue as far as he knew.

And I was looking into all the symptoms of a B12 deficiency and pernicious anemia as these all fit as well.

I do appreciate all the help and I am going to the doc on Monday, so keep all this info coming in so I can discuss it all with her.
1756321 tn?1547098925
I forgot to add the autoimmune diseases more commonly found with type 1 diabetes. These conditions must be considered in regards to your symptoms.

Graves disease
Hashimoto's thyroiditis
Addison's disease  
Coeliac disease
Autoimmune pernicious anaemia  
Myasthenia gravis  

Vitamin B12 is a definitely worth testing.  The problem with testing vitamin B12 serum is that the reference range is far too low. Symptoms do occur in low normal levels. An optimal B12 serum is above 800pg/mL or 600pmol/L. Serum Homocysteine and Methylmalonic acid levels are considered more reliable indicators of B12 deficiency.

Besides autoimmune pernicious anaemia (antibodies attacking instrinsic factor/parietal cells), vitamin B12 deficiency is also commonly found with hypothyroidism - most cases due to Hashimoto's (this is due to low stomach acid) and coeliac's disease (intestinal damage).

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363281 tn?1518219421
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1756321 tn?1547098925
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19694731 tn?1482853437
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