Sister needs Help - what is wrong?

[Thelma-Louise]

I would appreciate any advice the members here could provide. I am at my wits end with my sister who up to the past couple of months has always been fairly healthy. We have been to many doctors with no diagnosis yet - if anything, the doctors are contradicting each other. Would really appreciate the names of research health care facilities we could contact in New York or nearby states. She is 44 yrs old, 5'1'', still menstruating and used to smoke.

Symptoms

Jan 2006 - became dizzy, weak, sweaty/clammy and practically passed out after having a bowel movement. Rushed to ER and they did an angioplasty. Dr said it was a vasso spasm in her right artery related to prinzmetal angina. Released her with no meds and told to followup with Cardiologist. Was fine for a few months. No residual symptoms.

May 2006 - same sypmtoms occured exactly only this time the ER called the Cardiologist and he prescribed Norvasc and Lipitor. Chest pains & palpitations developed over the next few days. We went back and forth to the ER b/c she thought she was having a heart attack. Cardiologist reduced dosage of Norvasc from 10 to 2.5mg but symptoms persisted. Meds were then changed to 30mg of cardiazim 3x daily. Now my sister became tired, said she thought her heart was stopping when she tried to lay down and still had chest pains and a squeezing sensation in the middle of her chest and very dizzy and nauseous.

June 2006 - We went to her PCP and he said he doubted she really had angina - thought there might be an underlying problem causing symptoms. Now her symtpoms included swollen lymph nodes under arms and in throat and occasional panting or short of breath. She aslo said she is feeling a rush of cold/hot (like adrenaline) shooting through her body on and off during the day and night. She stopped all meds and went to an Endocrinologist who ran a host of blood work, and did a sonogram on her pelvis (found 6mm Nabothian cyst) and thyroid (right side of gland extremely small, left side normal). She did have hypothyroidism when she was younger. She also had a brain CT scan done which was remarkably normal.

We went to another cardiologist who also said he did not think her symptoms were heart related. We then went to a Pulmonary doctor who said although she did have some emphysema from prior smoking he did not think it was causing the symtoms she has. He suggested a sleep study - which she is going to this Friday. He had a CT scan of her lungs done and it confirmed an enlarged nymph node under her left arm and emphysema.

Now all the blood work is coming back and its normal?

In the meantime she is convinced there is something seriously wrong with her and she is going to die before anyone figures it out. One doctor suggested that this is all due to anxiety. I know anxiety can cause physical symptoms but would it start with a bowel movement? I'm not that convinced.

Her symptoms remain as follows: a shooting pain across the top of her right breast with a squeezing sensation in the middle of her chest. A tightness around her upper back. Swollen lymph node under left arm and throat feels swollen and tight with a dull pain at the base of her head or back of the neck. Occassional chest pains accompanied by dizziness. Overall dizziness, tiredness, and a occasional sensation of something hot/cold running through her blood or body. Changes in bowel movements - loose and then constipated. Pain in chest and back increase in intensity when she lays down to go to sleep and she feels it is difficult to breath lying down and thinks her heart stops or pauses. If she falls alseep she is frequently awoken with a start - as if something jerks her awake. Her blood pressure remains normal (112/72) although occasionally (1-2 times a day) it will rise sharply (150/100). Her cholesterol is 243. My research on her symptoms keeps suggesting thyroid or adrenal gland - since she has most of the symptoms associated with those disorders and both can lead to angina or heart related symptoms but the blood work is normal. She has been developing these thin purple lines on upper arms that last a few days and then disappear - I thought it might be striations, but not sure. And lastly - although I can not tell this to her face - over the past several weeks she has suddenly become very irritable and her moods change abrubtly and she is not normally like this. It may just be b/c she does not feel well. You can see it in her face.

What should we do next - if all the doctors can not find anything where do we go? She feels that she should be in a hospital so they can do all the testing in a few days instead of us waiting 2-3 weeks for different appts and tests to be scheduled. We are basically managing this on our own since her PCP thinks it will just resolve itself over time.

Sorry for such a long post - but I really would appreciate some input in terms of what else this could be or names of health care facilities I could look into that could diagnose her symptoms. Are there any health care providers on the board? Thanks so much.

[ticker]

Hi Thelma-Louise. I am sorry your sister is so sick.

Regarding thyroid tests, some people who have results in the normal range can still have a thyroid disorder. See if your sister has had her Free T3, Free T4 (besides the T3, T4) and thyroid antibody testing done. They are not usually done but are necessary for a comprehenisive view. If she has positive antibodies, she could have an auto-immune type of hypothyroidism called Hashimoto's Thyroiditis.

When the thyroid is not functioning properly, it can cause so many problems. I suggest that she get these tests done. You may want to post your question here and her test results at the thyroid board at this site. The people there are wonderful and can help you interpret them.

Don't give up, you will find out what is wrong. Your sister is so lucky to have you helping her.

[aswander]

Could be severe acid Reflux /GERD. People often don't get heartburn, and other symptoms develop - pain located in various areas around chest and arms, neck and back.

Treatment is a Proton Pump Inhibitor, by prescription. For GERD this severe, don't bother with Prilosec OTC. Get the real stuff by prescription.

For really severe cases, you need 2 doses of a PPI per day, not just 1 dose.

The prescription PPIs are:
Nexium
Prilosec (Prexription) - you can also get a generic prescription version
Prevacid
Aciphex
Protonix
Zegrid

[schao]

Hi Thelma-Louise:

I am so sorry that your sister is so sick. I have been ill for quite a few years now, with no diagnosis yet--I have been to so many doctors and have had so many tests done its ridiculous. Anyways, my next step is to go to the Mayo Clinic. I live in AZ, so I am pretty close to one. But, at the Mayo Clinic you go in for a consultation--then they test you out the wazoo until they find out what the problem is. Sometimes they admit you to the hospital, sometimes they don't. I dont know a whole lot about it, but my 1st appt. is July 13th, so we'll see what happens. What I have heard is good about the Mayo Clinic, is that they will have many doctors working on your case at one time, not just one. I'm not sure where the closest one to you would be, but it might not hurt looking into it. Good luck to you and your sister!!! You will both be in my prayers

schao

[Thelma-Louise]

Thank you all for your replies.

We went back to our regular PCP today and also spoke with the endocrinologist and they both agreed she needs to be hospitalized for further testing. Her TSH was normal at 2.32 (range .40 - 5.50), the T4 was normal at 1.3 (range .8 -1.8) and the T3 uptake was slightly low at 27.4 (range 27.8 -40.7), I don't think they tested the FT3 or FT4 and her cortisol was slightly high at 24.5 and so was the lyme AB/RFX at 1.10.The endocrin dr said there are several more blood tests he would like to do that you need to be hospitalized for as well as a CT scan on her pitutary and adrenal glands. So she will be admitted this coming Tuesday which works out well since she is doing a sleep study at the local hospital tomorrow night to rule out heart or breathing problems. She started taking nexium a few days ago and it has helped with some of the chest pains and tightness around the upper back but not her other symptoms like shortness of breath, fatigue, dizziness and the rush of hot/cold feeling she is getting. Today she was complaining of facial tingling and hand tremors.

Hopefully we are closer to resolving this, we shall see. The fact that she is being admitted at least makes us both feel they are now taking her symptoms a little more seriously.

Schao - good luck at the Mayo clinic - I have heard good things about them as well.

Thanks again to all.