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Re: Just diagnosed with PCOS after five years of hell...
From: Melanie (anonymous@obgyn.net)
Wed, 28 Nov 2001 07:04:46 -0600 (CST)
Hi This might be way off but when i was in my earlie 20's i suffered
from the same sleep irregularities as yuoi, drastic weight loss and
aching joints, oily skin, food intollerances and i was diagonsed with
M.E along side PCOS. I saw complementry theratists and found them
helpfull but the main help for me was Pine bark extract and niastatin(i
have spelt it as it sounds as i am not sure of the correct spelling i
took it 10 years ago!) it is a really strong antibiotic in its purest
form, evidently the ME had candida tagged on causing bloating and
'firmness' ha ha ha more like cement in the abdominal area, thrush and
nausia as well as compounding the aching muscles(magnesium helps this
with zinc) and the inability to conerntrate. I have lymphatic drainage
treatment which really hurt but after 3 months made a huge difference.
Dont give up hope, where are you based? feel free to mail me privately
if i can be of anymore support.
You are in my thoughts
Mel
At Wed, 28 Nov 2001, Barbra wrote:
>
>At Mon, 26 Nov 2001, Sonnet wrote:
>>
>>Barbara -
>>
>>I don't have a whole lot of answers for you and I'm sorry for that, but
>>I thought I could offer something on one point you mentioned.
>>
>>Lately I've been doing quite a bit of research on diabetes insipidus as
>>my husband and I are considering adopting a child with this disorder. I
>>always though insipidus just referred to Type I, and I was quite wrong I
>>found out! DI refers to a disorder, usually of the kidneys, sometimes of
>>the pituitary, that causes the frequent urination of diabetes without
>>the blood sugar problems. My father (who has a medical background)
>>called it "water diabetes" as opposed to "sugar diabetes." From what I
>>am reading, it can be caused by medications or insufficient
>>vitamin/mineral uptake sometimes. When that condition stops (you stop
>>the medication or start absorbing more vitamins) the DI stops. Could
>>this be what's going on in your case?
>>
>>I found a great deal of information at
>>http://www.nlm.nih.gov/medlineplus/ency/article/000377.htm
>>
>>At Sun, 25 Nov 2001, Barbra wrote:
>>>
>>.Also,I still don't understand and neither does my
>>>specialist-as to why and how I had this rare form of diabetes and then
>>>it corrected it self.
>>
>>--
>>Sonnet Fitzgerald, PCOS Association, Online Community Liaison. Email: sonnet@pcosupport.org
>>
>Dear Sonnet,
>
>Thank -you so much for the advice on diabetes insipidus.
>I,myself,new that this was clearly and indication of a side effect of
>the medications that I had taken,which were anti-depressants,,,despite,I
>kept insisting that my condition was not at all depression at that point
>in time,but merely a leg problem.
>
>I understand that this is a water type of thing,where the kidneys
>produce very clear,undiluted urine and that is exactly what happened to
>me.I was just urinating all the time and there seemed to be no end to
>it....and I was not thirsty at all...which is strange.
>Then I was told that when I was quite delerious,,,was brought to the
>hospital by ambulance,,that I had been severely
>dehydrated,,although,even not thirsty,I knew it was important to drink
>plenty of liquids as my doctor had ordered.
>
>They still,at this point,said that I was anorexic.My electrolyes were
>completely out of whack,which in turn caused me to go into a ventricual
>fibrilation and some atrial fibrillation.
>For three consequtive months,I produced nothing but a small amount of
>highly concentrated urine,,but was told that my kidney function was
>fine.
>
>Then told,possibly,with the hair loss(I was loosing in clumps,,had a low
>grade fever and rashes,,boils...that it possibly was my
>thyroid....checked it out many times and results changed almost from one
>test to the next.
>Then these high DHEA's...saying I was stressed,,,,then the liver
>problems,,despite I never touch alchohol(but hey,,just pass the rum
>now,,haha)!
>Just a lol!
>
>This has been one total nightmare for me,that I still cannot believe it
>is happening.
>Now,my diabetes has cleared up....so,,what next,,,I say,,,,I could not
>find any answers out there from the numerous specialist .
>I seeked homeopathic meds when I was down to seventy two pounds with no
>muscle mass,,,,,,skin was oily and acne taboot..She insisted that in her
>terminology,,that it was a blood congestion in my lower abdomen causing
>all the complains and put me on many different homeopathic meds..which I
>must admit...I was a skeptic...but helped me with the nausea and helped
>me gain my weight back and absorb,as it showed that I was unable to
>absorb almost anything.
>Isn't this strange.
>I have been seeing her for a year and a half....now my heart apparantly
>is pumping normal at an ejection fraction of 71...before was
>30..yes,,for real,,,apparantly,caused by this malabsorbtion
>problem....now,am told that I am insulin resistant,despite that my blood
>sugars are slightly below normal..
>
>I still have these high levels of testosterone.....the endocrinologist
>that I seen this time,said that it was unusual,as I have no hair any
>other place that my head and where it is supposed to be,,,none on my
>face or belly etc.
>
>None of this fits the description of this disease and I am confused...as
>I still have these wierd sensations in my legs....pulsating in my lower
>abdomen all the time....cannot lay on my stomache at all,nor on my side.
>
>sometimes I wonder if I should be on another site,as my symptoms do not
>resemble others posted here,,,but this is my diagnosis,,without an
>ultrasound or anything other than bloodwork.
>
>I feel somewhat relieved when I see how all of you women out there help
>support one another and understand and can relate to each others
>problems..but I cannot seem to find anyone out there with my same
>symptoms and it scares me,as I feel that this may not be the correct
>diagnosis at all.
>
>I have no weight problems...this you may find strange too,,I have grown
>in height two and a half inches,,increase my bone density and muscle
>mass.....I look more like a little wrestler than a woman...used to have
>the petite hour glass figure and now is quite muscular,,but not fat.
>Only problem is my belly swells like bread and feels as if there is a
>pressure inside that is cuttin me off,,,my thoughts,,,possibly a
>big,massive cyst.....wishing it were true and just have it removed and
>all would be well.
>
>I also have difficulty sleeping...sleep during the day and up till the
>wee hours of the morning......feel that adrenaline surge during earlier
>times...like afternoons and then tapers off after midnight.
>
>Affected by certain foods for sure...but the high protein diet did the
>exact opposite for me..I gained weight,,but much needed weight...so,once
>again,,I am so confused.
>I all honesty,,I may be participating in a case study....that is what my
>doctor says,,as I also shown to be growth hormone deficient and now
>producing this in large quantities.
>Anyone else out there have that too?
>I sure hope that I am in the right place..as I find a little peace just
>reading the caring messages that you women post to one another to help
>cope.
>My depression and anxiety is awful and reached levels now,where I am
>suicidal.
>I was not before,,till these meds.
>Also,I never had children and miscarriages...last one shortly before I
>became ill..so possibly a correlation between the two.I was 35,with my
>last miscarriage and then few months after that,,the problems with
>weight loss and my leg and then legs...like pains,nerves in the
>thighs,,,,then this nightmare.
>
>Please someone....or whoever else reads this..I don;t know where to
>turn,as I am in constant discomfort all the time.......weak and
>exhausted from slight exertion....especially when I bend down...still do
>excercises,despite,I can hardly breath....
>
>Okay,,off my soapbox now...am on my adrenaline surge and need a carb
>really badly.....
>
>--
>Sincerely,
>Barbra Camara
>
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