too many symptoms to count

[sick_not_crazy]

I am a 34 year old female with a miserably long list of symptoms that began approximately three months ago and are becoming increasingly unbearable. They are listed below in order of severity.

sudden weight gain (45 lbs. in 8 weeks)
extreme sensitivity to heat/heavy perspiration
overwhelming fatigue
frequent urination/urge incontinence
facial tic
restless legs with sudden uncontrollable spasms while sitting or reclining
numbness in hands, face, and legs
generalized swelling including face and extremities (My right eye is nearly swollen shut.)
persistent low grade fever
difficulty swallowing
headaches
intermittent visual disturbances
shortness of breath
insomnia
small light-brown "age-spots" appearing about 3-4 per week for the last 2 months (I am obsessive about sunscreen and have never spent a great deal of time in the sun.)

I have sought medical attention from both my PCP and a neurologist and had the following tests and results:

* chest x-ray and EKG showed slightly enlarged heart and some type of irregularity prompting her to order an echocardiogram and stress test for next week

* slightly elevated prolactin level

* low B12

* decreased polyclonal gamma globlulins (whatever that means)

* in-office neurological exam highlighted decreased peripheral vision in right eye, poor balance, and lowered sensitivity to stimulus on my right side

* CBC/TSH/Cortisol/ANA/A1C/Blood Cultures are normal

I have prior diagnoses of PCOS, endometriosis, peripheral neuropathy in right leg due to injury, and sleep apnea.

I was scheduled for an MRI of my head and neck today, but I was too large for the machine. I am also scheduled to see an endocrinologist thanks to a referral from my GYN who seems to believe that I am really sick. My PCP is normally a very good doctor, but today she seemed to hint that she thought this is all in my head. I am not sure how a fever can be psychosomatic, so I am a bit insulted. I am the first to admit that I have been diagnosed and treated for bipolar disorder for nearly 20 years, but I also know the difference between sick and depressed. This is sick. I am not a frequent visitor to the doctor's office, and I have not given her any reason to believe that I am a hypochondriac, so I am confused as to why my concerns are being dismissed.

Thank you for your patience with my rambling. I appreciate any insight you might be able to share.

[Londres70]

I think this is DEFINITELY metabolic and consulting an Endocrinologist is the right direction.  I feel for you being that your PCP "blew you off" pretty much.  I mean, how can gaining 45 lbs in 8 weeks be "in your head?"  Duh!

[pyush]

I am sure that you have neurological disorder.As you told that you have extreme sensitivity to heat....this symptom says that you have M.S.(multiple sclerosis).in this disease ,always there is exacerbation of symptoms that you told us.Please check MRI ....It will decide your diagnosis.And as you told that that you r gaining weight........May be because you are facing these problems,So you would have been trying to take rest as much as you can,and also you also have swelling in certain region..........You didn't tell your actual weight....may be you r fatty.......it seemed like..but it is just my thought...............In MRI, if you see big patches (3-4 IN NUMBER),it indicates that you have M.S.,and please dont forget to tell me about your MRI report,as it is very imp. for me,for you also .

[tammypriest]

Not qualified to answer really, but I can say I have those same symptoms almost exactly.  after tons of dr appts and specialist, the mri showed chiair mal 1, but no lesions (MS).  They say, from that test, i dont have ms.  Certainly have symptoms of ms and have fam history of it.  Seeing nuerosurgeon next wednesday, can share what I find out with you.  Please do the same.  my prayers are with you and no your not crazy, doctors just dont seem to listen anymore nor take the time to truly help.  they just want in and out of your room and on to next pt, more money, more money (gain for them, loss for us).
Are your lymph glands swelling???

[Londres70]

I can't not see how MS, the rapid weight gain and some of the other symptoms correlate AT ALL.  

FYI: Fatty is not a POLITE term to use to refer to someone who is overweight.  That comment is for pyush.    

[ellis9600]

Hi SNC!

You are NOT Crazy!

I feel your pain.  I am a 47 year old woman, gained approx 40 lbs. in 8 weeks, and have a long list of other nero symptoms, some just like yours.  The one that struck me that we have in common was being bi-polar. Like you it seems like some of my doc's don't believe me.   One of the things that has made me frustrated with my stable of Dr's has been that they pass my  symptoms off - mostly my weight gain - to my meds.  I don't know if you are on meds.  I am.  This is what I did to counter the dismissals I get.

So, mostly out of anger at being dismissed I did my own research.  I also wanted to find out if any of the meds were contraindicated with each other.  I got the list of side effects and contraindications online - not the lists for patients-consumers, but the ones written for Doctors.  I did see that there were a few side effects and contraindications that they listed "for physicians" that didn't appear on the consumer information.  I found out some good information about what I was taking and had printed out the info too.  So no when I get the "It's probably your meds" I've got back up."  I mostly get the brush off from Neurologists.

"You know your body better than ANYONE. If you feel something is wrong.  Something is wrong.  If a doctor doesn't believe you find another one. Keep going until you find some one who will listen."  Those were words of an anonymous nurse who was reading my chart while I was being prep'd for surgery.  A few months ago.  I try to remember her words every day.

Hang in there. There are answers.

Ellis

[sick_not_crazy]

Ellis,

Thank you for your support.  You are correct that my PCP seems to think that everything relates to my medication.  That fails to hold water now because my psychiatrist discontinued the meds. that I had used for years when my facial tic started in May.  I have been taking Saphris for about four weeks, and I am continuing to have the same symptoms.  My mood continues to be stable, but the physical ailments are taking their toll.  My husband and I see the same PCP, and he thinks she walks on water, so changing providers is proving to be a challenge.  I get very tired of being told that symptoms that are very real and specific are dismissed as being a product of medication, mental illness, or obesity. Fortunately my GYN and neurologist seem to think I am not just nuts, so perhaps an answer is on the horizon.  I am just so impatient with feeling this way.  I am a teacher, and school starts next week, so I am anxious to be well.

[thyroidian]

Firstly, may i say you are not crazy....
Dont let the medical world , lead you to believe that also..

Now lets start, i have looked at your symptoms, and the tests you have had done,
I didnt find one for a full thyroid blood count on that list, all i found was a TSH, and you cant judge a thyroid off TSH alone, so i would suggest getting a Full Thyroid blood test done.

Also you have had a cortisol blood test, may i ask what time did they take this from you?
If it was the morning, can you remember what time.

I would say you need a good Endocrinologist, who will test you for Cushings, Thyroid, Etc....also diabetes insipidus...


Hope this as helped, but im here if you need any help,
Remember you are not crazy, you need to get a proper diagnoses for your symptoms, and the correct treatment to help you to get better.

Good luck
Nicola

[sick_not_crazy]

Nicola,

Thank you for your insight.  I had a TSH, Free T3 and Free T4.  Apparently all were within the normal ranges.  My cortisol was drawn around 10:30 A.M.  I am acquainted with a lady who has Cushings, and she said that a single cortisol draw could not rule out the disorder, but mine was only 9.9, so the doctor will not pursue it.  My A1C was exactly 6 with a fasting glucose of 106, but the PCP is not concerned.  I thought that sounded rather borderline myself, but what do I know.  I have been diagnosed with insulin resistance in the past, but it has never been treated.  I hope that my visit to the endocrinologist is more productive.  My appointment isn't until the end of August, so I have a long time to fret over it.

Thanks again!

[thyroidian]

Hi.
Well your blood cortisol bloods were drawn to late, they should be drawn at 8am if its a morning blood test.
Our blood cortisol works like a clock, it is actually a cycle.
It is usually highest at 8am , and this time would be a good time to draw a cortisol blood test.

You could do a 24hour saliva test for cortisol, were by you put your saliva in a sample bottle 4 times over the day, which will give you an idea.

Also have you done any 24 hr urine collections?

I would say cushings, and diabetes, need to be illiminated properly with further testing done, by a specialist endocrinologist.


I hope in August , when you go and see the endocrinologist you get some testing and some answers, so in this time now , i would prepare yourself for the appointment.
Write a list of all symptoms, and how you feel and how it affects you, this is good to do because when you get in there, we often forget little things, and those little things are usually important, to the illness.
Best wishes, and a big good luck.for your appointment
Nicola