I need help and no-doctor has taken me seriously

 

I'm a 30 year old female 10 months postpartum.Dx with postpartum cardiomyopathy about 4 months after delivery and have recovered. But I have been extremely fatigue.Well I will actually say all of my symptoms started ONE day June 28 of 08 to be exact...

And heres all of my symptoms

 

extreme fatigue

shortness of breath

cold extremities

skin looks like livedo reticularis

muscle weakness/ lip twitches for days

tingling in head and have had brain tingling sensations

sensitivity to light especially *florescent

I feel like I have a constant hangover

always unbalanced  equilibrium I have to grip feet to ground

I have severe memory problems and brain fog

Depression-----can't find out whats wrong with me

anxiety attacks

swollen lymph nodes

hypoglycemia sometimes

my menstrual cycle is monthly but seems to worsen all these symptoms

the fatigue is unbearable I have to sit in a chair just to wash dishes

my life has not much quality and my family and children are suffering.

 

 I have had my blood work ups, an MRI

They have ruled out Lupus,thyroid issues, hepatitis, no infection detectable by basic blood work. I am to the point of being tired of describing all these symptoms to doctors.I have been to 15 doctors the ER at least 8 times in 10 months and 200 viles of blood. I have no idea whats wrong with me and I'm sad and scared.

 

To all that have been DX with this condition can this happen after a illness? Or a very emotionally stressful situation.Does it just happen instantly?

 

A few more important thing to add I have hemorrhaged twice after delivery. I have been bitten by a tick when I was a child twice.

Thanks for listening and any thoughts would be greatly appreciated.

Maebae

Post Edited (maebae) : 1/30/2009 10:07:14 PM (GMT-7)

 

Thanks Maebae

I do have Vit-D deficiency, B12 was normal 488 and with all the research I have been doing I'm leaning towards Addison's Disease.I go back to the doctor tomorrow afternoon and I have had some unique hyperpigmentation on my gums and a large area under my arm that has grown alot since I was a teen. The fatigue is getting worse by the day along with spontaneous anxiety with no trigger,no appetite so well see I know I need a AM  cortisol level checked. Just hoping I get an answer soon and medication if thats what its gonna take. I just think everyone deserves a fighting chance to know exactly whats wrong and the tools to survive it or at least know and be prepared especially when you have children. I just can't go to a doctors appointment and tell them whats wrong and they say nothing see ya in a month without even trying to find out the problem. Even with CFS alot has to be ruled out to be properly DX and how do you ever get that when the doctors just stop in their tracks?Pray for me please

 

Thanks maebae

your area, ask friends who they use & what do they think of their Dr.  But don't put your life & your happiness into the hands of someone who will go home & forget all about you until you make another appointment.  I used to think all Dr's were sent from heaven, but sadly, I have found that isn't true.  A good Dr will get you dx'd in no time, sure it will take some time but once you are on the road to a dx it gets easier because you know your Dr is going to figure it out.  Many soft hugs, Denise

---

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

 

maebae  PS*you all have a nice weekend

about panic attacks I've had those for many years,along with depression this is definitely not just that I wish it was actually it would make this easier. The Lyme disease well with all my doctors visits by time I tell them whats going on its an hour later and they seem like they're ready to run out the door. The doctors seem to be very uninterested in my health really cause I don't appear sick I guess...I will have to bring it up directly, they just look at all the blood work results with the basic Metabolic workup, CBC, blood clots factors and say they have no clue. My last visit my husband asked the doctor if I could be admitted to be monitored and run whatever tests it would take to find out the problem and she said "we don't do that anymore we have to have a DX or a reason to admit"  if you vitals are fine then your not sick. I hate having to prove all the time how sick I am, I wish I could wake up tomorrow and have my life back I'd give anything to feel healthy again. Depression and anxiety is not making me sick I'm depressed and have anxiety because I'm sick , why is that so hard to understand I guess if doctors could just blow me off like that they think I'll just go away and learn to live like this But they have to be accountable for the health of they're patients and just because I have medicaid don't mean my life and health has no value! My family deserves to have they're wife and mother and I should be able to have the tools to fight just like someone with money, just like one of they're own family members .And if they aren't as educated as the Degrees on the wall say then don't waste my time just say you need a specialist in whatever field it may be but I can only deal with the common health problems and I care not to spend any of my time on investigating your personal illness. That would save me alot of unnecessary stress, time and everything else that goes along with this . Every time I come online and speak about my frustrations I get worked up and it prepares me for the next visit!LOL  Anyway at least this last doc has referred me to the next doc in a short amount of time and is willing to send me to Mayo I know if I have to go there I will find out what the problem is . I thank God for all your support and I also thank God for making me (Me) cause I'll never give up or let someone tell me something and not have a valid point.

 

Maebae-----Have a great day:) 

Its been alittle while since I was here... Endocrine doc ruled out adrenal problems well actually awaiting 3 more blood tests ,Catecholamines, aldestrone, renin. But from what I read it don't match up. He said from all the tests I've had it looks like Dysautonomia my blood pressure drops when I stand and my heart races when I stand like 130. So I have to find a specialist for that. So one step back 2 steps forward:) staying strong and trying to be positive. To answers a few of your questions I live in Indiana near power companies, not in a wooded area have had dizziness for about 7 years since birth of 1st child. When not pregnant had symptoms not as severe untill last baby one year ago today Happy B-day to her:) never been tested for lyme. From what I read dysautonomia or (POTS Syndrome sometimes is accompanied with CFS) So I'm still in the right place. I had a liver ultrasound a few weeks ago because of the fluctuating liver enzymes but results were normal, so that was good to hear. No withdrawl issues I don't drink or use any drugs or meds I do smoke cigarettes I know thats bad I plan to quit especially with this racing heart.Well thats my update talk to you all soon I'm exhausted and very dizzy caught a virus on top of all thats already going on

maebae

maebae

EARTHANGEL good point just had MRI re-evaluated a few days ago pituatary is normal no change in size and no lesions... I am awaiting once again for a referral from my Primary to see a cardio that specializes in dysautonomia. Hopefully it doesn't take forever like everything else, I have to learn how to stay patient throughout all this . I have basically stopped living my life waiting for the day I'll get better and I woke up today and told myself I am not gonna wait till I get better to live <I'm just gonna live and pray to get better and I have to make changes like get a motorized scooter, do one activity instead of trying to do a few like I use to and try not to stress cause that affects me the most and delays the healing.

 

Maebae hope you all are having a good day