I need help and no-doctor has taken me seriously

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maebae
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Date Joined Jan 2009
Total Posts : 18
   Posted 1/30/2009 10:04 PM (GMT -7)   
hello all who reads this,
 
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)


Tirzah
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Date Joined Jul 2008
Total Posts : 2284
   Posted 1/31/2009 10:55 PM (GMT -7)   
maybe headache-less migraines? also called "silent migraines".

here's a link:
http://www.webmd.com/migraines-headaches/what-are-silent-migraines

It wouldn't incorporate every symptom, but does have most of the ones you mentioned. A neurologist could diagnose & treat.

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 2/1/2009 10:24 PM (GMT -7)   

Hi Maebae,

You might want to check out the Lyme forum here on healingwell, to compare your list of symptoms.  The traditional testing that your average doc or infectious disease specialist uses for lyme is not too accurate.  If you log onto the lyme forum, check out the welcome thread.  It is common to have opportunistic infections become activated after added physical or emotional trauma.  I hope you get some answers!  I totally understand the frustration of not having a diagnosis or any abnormal bloodwork for an exended time- it was quite maddening to me.

Tracy


myfairlady
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Date Joined Feb 2009
Total Posts : 16
   Posted 2/3/2009 8:45 AM (GMT -7)   
Maebae...
You definately need to see another type of 'doctor'. Go to a wholistic doctor as the typical medical profession is not always up to date on these issues. I have a friend with many of these issues and she was given 2 MRIs and alot of other bloodwork and no one found a thing. She went to a doctor who specializes in homeopathic / wholistic healing and found that she was extremely deficient in the B vits. She gets injections. It has helped... she is still trying to learn more. Keep hunting till you find someone that believes you. You are not crazy. Many of us have gone through the same thing.

maebae
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 2/3/2009 4:10 PM (GMT -7)   
Thank you all for your responses. Its kind of disheartening to see so many people posting online that are so ill and never getting answers .Sometimes it makes me think I just have to get use to living this way, and then anger sets in and I start researching and making appointments. I'm not familar with the GSH and I will email for more information---and I really just need to find out whats going on because my kids really need me and I'm so drained in every way .
 
Thanks Maebae

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 2/4/2009 3:09 PM (GMT -7)   
Maebae, Another thing you can look into is a Vitamin D deficency.  This is a growing problem & can cause all kinds of symptoms.  I have alot of the same symptoms as you & after being dx'd with Fibromyalgia in 2004, it took another 4 years to get dx'd with ME/CFS.  I was dx'd just a few months ago.  So, just keep plugging along.  I am taking a break from Dr's at this time because I have been through the wringer, as we all usually are.  I finally just decided to let it go for awhile.  I have some symptoms that don't fit with either of my dx's so I will start again this summer.  It is a long & winding road to a dx.  Just because your blood tests came back normal for an Auto Immune disease doesn't mean you can't still have one or two so a dx is essential.  I also, think you should look into Lyme Disease.  Hugs, Denise

 I have:  Fibromyalgia, MECFS, Holt-Oram Syndrome, nasal allergies, depression, TMJ,

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


ladybugmandy1
Regular Member


Date Joined Feb 2009
Total Posts : 22
   Posted 2/22/2009 9:07 PM (GMT -7)   
maebae.....you need to see dr. a. martin lerner of michigan. i have suffered with this for 17 yrs. if i had gotten to him sooner, i would be well now. don't waste time.

jma44
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/23/2009 7:40 PM (GMT -7)   
Hi,
I really hope you find out what is wrong, have you researched b12 deficiency? http://en.wikipedia.org/wiki/Vitamin_B12_deficiency

Has a lot of symptoms in the list similar to yours. I just found out I have this, after having lots of wierd un-related symptoms (visual migraines, eye twiches, fatigue, pain in joints). Also, you can take b12 yourself and see if you improve if the Dr's aren't listening to you.

Good luck!

maebae
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 2/25/2009 3:52 PM (GMT -7)   
Hi,
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

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 2/25/2009 6:15 PM (GMT -7)   
Maebae, I really feel for you.  Not getting a diagnosis is like living in limbo.  You need to find yourself a Doctor who will stay around long enough to get you that answer.  The Doctors I see are just awesome & one of them once told me I was not to worry about getting it diagnosed,that was her job.  If your Dr won't listen then go to one who will.  There are just as many good ones, who care, as bad ones who only are doing their job & no more.  Do some research about Dr's in
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


Baloo
Regular Member


Date Joined Feb 2009
Total Posts : 210
   Posted 2/27/2009 11:52 AM (GMT -7)   
My heart goes out to you, I went through so much of diagnosis and well sometimes just plain meaness of the
doctors. I would even fall over sideways. They first thought I had MS. Then after so more testing they put me on disability for symotoform disorder, which is basically saying its all in your head. I lived with that for years and finally the Doctors and community started to reconize Fibro and Chronic fatigue. So what I am saying is, our prayers are with you. And I pray that the right doctors will be found. ;)

kris11
New Member


Date Joined Feb 2009
Total Posts : 11
   Posted 2/27/2009 12:10 PM (GMT -7)   
Asked to be tested for Mononucleosis and if you have cats, Toxoplasmosis.

maebae
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 2/27/2009 4:27 PM (GMT -7)   
Thank you all for the kind words and support. I did go to the doctor yesterday and showed her my hyperpigmentation and tried to explain my symptoms is more detail she got me into an endocrine doctor for this coming Wednesday she said it may be Addison's disease... she also said to find out how I can go to Mayo clinic because my insurance won't cover out of state but she'll refer me there if its not Addison's , so I'm being taking alittle more seriously after this long year!!!! I guess I have to just keep faith and have alittle more patience.
 
maebae  PS*you all have a nice weekend

ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 2/27/2009 5:57 PM (GMT -7)   
Sounds like Lyme symptoms to me. I would see a Lyme specialist. The tests often come up negative even if you have it.

rima3066
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/28/2009 6:17 AM (GMT -7)   
well it seems a panic attacks symptoms....possible you where under hard stress...

try to travel for a week... take a break alone....go to spa... change anything you will break that pain

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 2/28/2009 2:20 PM (GMT -7)   

Oh maebae, I am so glad you are being taken seriously now.  It sometimes takes a little persistance to get dx'd.  I wish it wasn't that way.  I will have to look up Addisons disease.  Is this an auto immune disease?  Whatever you have I know you will be diagnosed soon & will be able to get some relief.  I just hate the limbo of not knowing. 

Have they ruled out Lyme disease since you were bitten by a tick?  Well, keep us posted on how you are doing.  I am always here for you.  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
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 3/1/2009 11:31 AM (GMT -7)   
Hello again,
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:) 

LF1980
Regular Member


Date Joined Jul 2008
Total Posts : 78
   Posted 3/11/2009 7:33 PM (GMT -7)   

Sounds like Lyme disease. Please try to see an lyme literate doctor.  Please let me know if you need the name of a great lyme doctor in your area. If you have been tested for lyme please know that the tests are unsophisticated and only pick up a handful of strains when there are hundreds.

You should not have to live like this. Please let me know if I can help.

good luck.


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 3/11/2009 8:04 PM (GMT -7)   
Maebae, When is your appointment?  I am glad to see you fighting for good medical care. Just because they can "say" they are Doctors means nothing.  They have to earn your trust & respect.  So many feel they automatically get that just because they have the MD after their names.  Shop around, there are as many good ones as bad but you do have to be ready to say "bye" if you get no help.  Hugs, Denise 

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


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/16/2009 9:55 PM (GMT -7)   

How were you before you were pregnant? Ever experience these symptoms before?

Sounds like lyme, benzo withdrawal(tranquilizer/alcohol), some electrolyte imbalance, metal poisining, etc. Something is effecting your CNS which is why you have such an array of symptoms across many systems in your body. Where do you live and are you exposed to the woods, chemical plants, etc? 

Vin


History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 5 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


reenergized
New Member


Date Joined Mar 2009
Total Posts : 7
   Posted 3/18/2009 11:24 AM (GMT -7)   
Hi maebae, several of your symptoms sound like Adrenal Fatigue, which I've been recovering from for the last 2+ years. If I understand it correctly from Dr. James Wilson's book (very good!), Addison's Disease is when your adrenal glands are almost entirely shut down. But Adrenal Fatigue can be severe to moderate. I was there two years ago when I "hit the wall" (minus the panic attacks and a few other of your symptoms, but definitely the hungover feeling, imbalance, hypoglycemia, severe fatigue where you can't even carry out normal daily functions...yup, it's awful).

More of my symptoms and story at http://addyandme.blogspot.com/2007/04/signs-of-addys-arrival.html

maebae
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 3/27/2009 7:25 PM (GMT -7)   
Hi .
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 confused
maebae

maebae
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 3/27/2009 7:30 PM (GMT -7)   
LF1980----It wouldn't hurt to have that Lyme specialist name so yes it you wouldn't mind. Thanks
maebae

earthangel**1**
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/29/2009 5:14 PM (GMT -7)   
Hi, I am new and I am a nurse and a couple things stuck out in reading this Maebae, you said that you hemorrhaged a couple of times. If that was during childbirth, you could have infarcted your pituitary gland -a lot of your symptoms sound like hypopituitarism. Just thought I'd mention this ...? Good luck!

maebae
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 4/3/2009 3:01 PM (GMT -7)   
Hi,
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
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