So Many Problems & Questions....

[lmt033167]

In 2003 I woke up one morning with excruiciating pain my left kidney; I started going to the bathroom 8-10 times a night and 30-50 times daily; this happened off & on for awhile and I went to see my dr. He did testing that came back normal but it's continued off & on since then; it almost seems as if I have kidney stones but didn't. I had a ton of different tests that showed I had an enlarged liver (dr said it was fatty liver due to high cholesterol but never did a chol. test). The dr told me to get off the couch, quit eating and lose weight and all my problems would stop.

I kept having problems including nausea, stomach bloating, chest pains, sob, fatigue, fainting, dizziness. I was having female probs also; so I went to my gyn and he looked at my test results from my pcp and said I needed to have surgery. I had severe endometriosis, adenomyosis & hundreds of uterine polyps. My ins at that time refused a hysterectomy since I didn't have cancer, even though the only cure for adenomyosis was that.

I changed pcp's the next year and went for my annual and to see if they could yield any answers, and nothing showed up but uti's or kidney infections, which they treated with Levaquin. In May 2007 I went to this pcp's weight loss clinic thinking losing weight would be the answer. He did a full workup ekg's blood work etc since I hadn't seen him in a few months, put me on Phentermine for 5-6 mths and I lost weight - 40+ lbs.

Nothing changed; I still felt crappy and having episodes of fatigue, cp, sob; fainting/dizziness; kidney pain; still urinating a ton. I kept on exercising and in Dec 2008 I decided to try another dr. I told him my history and he said try to lose 25 more lbs to see if that helped. I took Phentermine again and within a week I was so sick I could barely move, the problems intensified so he switched meds; it was terrible; so I quit, and a week after I went off them I started feeling better.

Until Dec 2008, all of my bloodwork was perfect, middle of the line for everything; except my sodium [138] and gfr [76] lvls were alittle low. Now my sodium is 135 and gfr was 59. We were looking for new health insurance in Jan 09 and we got United Healthcare, which has been a great plan and has been a lifesaver.

We went to the beach for a week in April and I had no problems during that time even with all the stuff we did; when we came home it took me 2 or 3 days to even be able to walk I was hurting so much and fatigued so bad. It took until May and I started feeling better and started packing our house to move.

In the middle of June 2009, I was cleaning my younger kids playroom, had a dizzy spell and slipped & fell breaking 2 small toes and hurt my left back area near my kidney. When my toes didn't heal and my back was still hurting, I decided to find a dr and go in. He did a full workup and asked if I had been having any other problems and if I was feeling ok. It wasn't my back; it was actually my heart. It felt like spasms of kidney stones because I was having pvc's every 2-3 beats constantly; he sent me to a cardiologist & EP.

When I first saw the cardiologist and she went over my history she told me fainting is never ok - no other dr had ever told me that before; even though I told them I had passed out since I was 9. She also said some of the symptoms I was having were not heart related and appeared to be something else (I can't remember for the life of me) but neurologic related and by the time I'm 50 I would have to have someone take care of me. [insert brain fog here] I wasn't paying alot of attention then, because I really didn't think anything was wrong with me.

I had a full cardiac workup and found out I was having 54,000 pvc's daily, v-tach; possible RBBB, Mild Tricuspid insuff., trace mvp and Mild Left Ventricular Hypertrophy. My EP scheduled me for a HUTT and EP Study & Ablation. During the ablation, he triggered some pvc's that were malignant and he suggested implanting a PM/ICD, but was unsure if it was due to cardiomyopathy or ARVD.

The dr said based on my complex PVC's and ventricular tachycardia, he felt that the bigeminy could be decreasing my blood pressure, contribute to the syncopal episodes and cause enough ventricular dyssynchrony to cause cardiomyopathy. They implanted a Pacemaker/ICD and did testing - it showed I had developed Non-Ischemic Cardiomyopathy. I'm taking Zebeta (Bisoprolol) for the heart rythym issues.

During my tilt testing, I started with BP 126/79 HR 77; at 20 min Nitroglycerin was given; my BP went to 137/71 HR 109. Within 4 min after nitro; I had a syncopal event with no palpable pulse and HR dropped precipitously to 20 bpm. My test results said - Classic symptoms of neurocardiogenic syncope with cardioinhibitory and vasodepressor responses; Sinus Bradycardia; and a disorder of The Autonomic Nervous System Associated With Orthostatic Intolerance, which they put me on (ProAmitine) Midodrine 3 x daily; 6,000+ mg of sodium, compression hose and a few other suggestions.

There's alot of other random things that have been going on that made no sense until I started researching NCS & Dysautonomia. I've had some problems the past year with brain fog; mixing up words or not being able to think of simple words like chair; car etc. Things that used to be quite easy such as simple math are sometimes no longer easy. I've had muscle weakness; pains & spasms; moderate Sleep Apnea; heat intolerance and I noticed a decrease in sweating to almost non existent now. We live in FL and up until this year, I did all of the yard work; during the heat of the day even and working outside 3-5 days a week, now I can't even be outside going into the stores without feeling weak & nauseated.

I'm not sure if this is muscle or nerve related - my husband's been doing leg massage hoping to help with blood pooling, but it hurts so much I almost cry; even a light massage - massage with palms doesn't hurt as much, but if he uses his fingers it almost sends me through the roof. This is a new thing in past couple of months and I've never had a problem like this before.

I had an EEG done to check for Epilepsy & blood supply problems, but I haven't been back to the dr to see the results.

Does any of this make sense to anyone? Is this just NCS/Dysautonomia related? Sorry for the extensive post, I really need to find answers to what's wrong with me or what path to take for which dr and what to ask so I can write it all down incase it's one of those days for me.

Thanks for listening & any help is appreciated.

[sue1234]

You sure sound like a complicated case with the heart issues, but still familiar to the dys. group. I am thinking one thing, besides your dys. issues, is have you ever had your PTH(parathyroid hormone), ionized calcium and 24-hour urine calcium tested?? With your kidney-stone-like issues and the broken bones, fatigue, etc. it MIGHT be an issue. It wouldn't hurt to rule it out.

[lmt033167]

Thanks for the tip on pth, I haven't had those tested, but going to ask my pcp about them next week when I go back. I've had my serum calcium tested a few times, but not ionized calcium.

My heart problems are still unbelieveble to me, I knew I didn't feel great but figured one of the doctors who had my test results would tell me if the EKG's were abnormal. I've been living with this dangerous problem that I would have had corrected before if they had told me.

I'm trying to learn as much as I can about what's wrong and how to treat it, but things like my dr not being in the office when I go in or my cardiologist not having time to answer questions makes it a bit hard