Some health questions-MRKH

[snoflake241]

I thought that this might be answered more extensively in gen. health, where more people might read it.
First, let me state that 'see a doctor' is not feasible advice for me. Take all the problems we usually have with healthcare, then compound them by being in the mountains of North Carolina. The high mountains. (and yes, it is somewhat similar to the town in Deliverance, but alas my husband thinks that it is heaven on earth.)

I have been reading through some old posts and have several questions, if anyone has any info or websites (excepting mrkh.org, already been there).
I guess you should know that I have MRKH, with ovaries, fallopians, and 'functional' vagina. Beyond that, I don't know because I have never found a doctor that knew anything but the name of the syndrome (and she called it muellerian agenesis)

1) First, one person states that they did experience cramps every month, and that there urine was a dark color (like beer) at that time. Is it true that this dark urine is related to a menstrual cycle.

2) On the mrkh.org website, there is a survey which talks about skeletal problems, specifically ribs. I'm not good with medical terminology, so I am not sure if they are implying that mrkh can cause two short extra ribs at the bottom of the ribcage? Or maybe the two bottom ribs being deformed. I ask because I have two ribs that are only about 4 or 5 inches long and curve down toward my waist and tend to hurt alot.

3) I notice alot of people talking about joint pain. I have been to the doctor for this, and was told that I am too young (age 26) to have arthritis and that it was all in my head. Could this be linked to MRKH?

4) No one knows what causes MRKH, but I wonder...My mother is diabetic and should never have had a baby (oh, she's sooo responsible :\ ) At any rate, she says that at the time, her blood sugar was out of control - she considers 'in control' to be blood sugar levels between 30 and 420! I just wanted to hear any opnions that this may have been a contributing factor.

Apologies for rambling on, but I have so many questions and so many people here seem to have so much information. I look forward to anything anyone can tell me.

[Sofie]

Hey snoflake

and welcome.


Joint pain can be allergy-related. It could be caused by something in your household, clothing, toothfillings or food.
Joint pain can also be inherited. Does anyone else in your family have similar problems? If yes, do they have a diagnosis?

I have scoliosis and pain in the muscles along the spine. I had doctors telling me, that it was caused by psychological problems. So I went to see a psychiatrist, who also happened to be a neurologist, and at the end of the day I had a correct diagnosis. He also told me that some practioners try to avoid *expensive* diagnoses by telling patients, that their pain isn't real.
Some hospitals have specialists, who see many patients with back, neck and shoulder problems.

I'm not sure about the ribs. I have 6 of these short ones and they don't cause any problems.

Sof i e

PS. Of course there is no one else like you in the world. :cool:

[Dana Gold]

On that very same survey: ( http://mrkhorg.homestead.com/files/home/PhysicalSurvey.htm ) it mentions fibromyalgia and allergies as part of the constellation of reported symptoms experienced by women with MRKH. Fibromyalgia symptoms usually are tiredness with associated muscular/joint aches and pains. Allergies are immune responses by the body resulting in inflammation and depending where the body part is affected will cause aches and pains and swelling (edema) with redness. All of the aforementioned may mimic arthritic symptoms.

Dark urine may be caused by dehydration (not enough water drank).

Without access to medical care/lab testing it is extremely difficult to ascertain kidney function (urine test or blood test). I have heard of on-line home order lab kits, but I can't vouch for their credibility or accuracy. I don't know what else to tell you, but good luck and maybe one day you can get out of the Boondocks....maybe visit a University med center...ooops!! :embaresse I said it anyway :biggrin: .......bye-bye. :redface:

[snoflake241]

I should probably mention that I still wouldn't want to go to a doctor if I lived in the middle of New York City.

Thanks to the treatment I got from several doctors when I was first diagnosed with MRKH, I tend to avoid a doctor's office whenever a pelvic exam might be brought up.

I was at what was supposed to be the leading women's center in North Carolina, and one of the best in the southeast. But none of the doctors had ever treated MRKH, and only one had ever heard of it. I became the center of attention for half an hour, with three different doctors examining me. :embaresse
The first tried three times to use the little metal tool (I guess some kind of dilator), and completely ignored the fact that she was hurting me until I actually screamed loud enough to be heard out in the waiting room. She was more concerned with finding what she was sure was there somewhere, than with the fact that she made my first GYN visit more like a tour through hell. I've never been to the GYN again, and before I even go to a real doctor, I have to be on the verge of dying. I have found that with a little research on the web, I can usually help myself (certainly more than the doctors up here).

I know, I know, I'm probably risking my health and life, but quite frankly I gotta wonder if it's not a fair risk...

[snoflake241]

I actually meant to reply to Dana, and got off on my own little tear.

The allergy thing sounds right, because often my knees will swell to the point that I can't stand or walk without severe pain. And I do have a lot of trouble with my sinuses, which I suppose would be a result of allergies?
But also my hands ache in the joints, which I really do think is arthritis, because it gets really bad in the winter and my fingers will sometimes cramp and curl so that I can't straighten them. I am a student in college, and when this happens it is embarrassing because I can't do any assignments in class because I can't grip a pen.

As for the dehydration, that is also what the nurse practioner told me, so I started drinking 10 glasses of water a day for several months, but all I ever got was heartburn and it didn't help whatever it was. It's been going on for several years, so I guess that it isn't too serious.

The doctor who first diagnosed me said that she believed that MRKH could lead to internal organs not being exactly where they were expected to be. Does anyone know if this is true? Just curious.

The hearing loss is interesting. My husband thinks I just have selective hearing...because I can hear women's voices really well, but not men's, especially if there is another noise (like the tv or washing machine)

Thanks for all the info. Any other good websites for me to expand my mind?

[Dana Gold]

Dear snoflake,

I have osteoarthritis of the knees and ankles (primary to hypogonadism and secondary to trauma from fractures due to osteoporosis). Your symptoms of swelling and pain and limited movement are exactly similar to mine and a few years ago, I was getting cortisol injections. These symptoms are due to the inflammatory response by the body, an immune function, resulting in release of chemicals to produce the redness, swelling etc. Alllergy symptoms are the result of some of the same chemical release. It has been established that arthritis may be associated with ovarian or testicular dysfunction (low sex hormones). Please refer to the Table 2. Risk Factors.... in the link below. Your MRKH may also have resulted in structural differences in joint shape, also causing friction between joints and lessening of cartilage surfaces. MKRH may or may not have affected your ovarian function (not structure)...this I cannot say, but if it has...then low circulating estrogen is a risk factor in both osteoporosis and osteoarthritis . Without going into "doctor speak", anomalies (in fetal, adolescent , and adult developmental years) of most any steroid hormone synthesis may result in altered mineral metabolism....."skeletal" problems. The link below is quite full of complex medical stuff, but I wanted to show you a "qualified source", and not another Internet "everday" site....and I am personally more apt to rely on medical specialty and professional research sites....I'm a "science nerd"

http://www.rheumatology.hss.edu/phys/diseaseReviews/osteoArth/osteoArth_phys.asp

I mentioned dehydration in relation to urine color and clarity because I was wondering about your kidney function.....which may be rudimentarily assessed by observing color, turbity , "frothiness" , and odor in voided samples (yes, I know....yucky :sick: , but those things were important, clinically) .....I used to work in hospitals and clinical diagnostic labs years ago.

Hearing loss?...interesting, because I have hearing loss in the higher frequency range in one ear, perhaps you have loss in the lower frequency range (bass and tenor of male voice). 3 very tiny bones comprise the inner ear mechanism which is attached to the eardrum; structural anomalies or trauma to any of those 4 will affect hearing.

As for sinuses allergies...oh yeah....I can empathize...I just had a "sneezing attack a few minutes ago"....I don't like taking the drugs for it though: dry mouth, tiredness etc.)....until I get an ear infection (dummy) :confused6
I've had a few ear and sinus infections, but been more careful recently (blowing nose etc) and those have lessened as a result.

Anyway, please take care, hope you don't get too lonely in the "Appalachias"

You could always "dip into" some moonshine to relieve the boredom :happy68: :biggrin:
:wave1:

[Dana Gold]

For those wondering about the link between hypogonadism and arthritis and whether it is true or not, I have provided the link below which establishes such a relationship in male hypogonadism.

This link establishes hypogonadism and arthritis in males with testicular dysfunction; I believe a similar phenomena may occur in female hypogonadism since steroid hormone deficiency is associated with various metabolic and neuroendocrine anomalies. The excerpt from the link below points to this...note the comment about females :

The clinical observation that sexual dimorphism plays a role in the immune response suggests that the endocrine system is an important factor for the development and maintenance of the response. There is a high frequency of autoimmune diseases in females and an increased immune response to antigenic stimulus. These observations make it evident that sexual dimorphism probably acts on the immune response through its effect upon the thymic–hypothalamic–pituitary–gonadic axis


http://arthritis-research.com/content/3/6/362

I am currently trying to find a similar definitive web link to female hypogonadism, and may be included in one of the citations/abstracts at the bottom of the web page...I just didn't have time to go through them; of which at a glance mention estrogen factors.......gotta get back to work (no PC at home, only at work)......

Dana

Dana

[snoflake241]

It is definitely the only plus to living here, and tastes smoother than 20 year old rum...unfortunately I have some natural high tolerance to alcohol, so all I can do is enjoy the flavor and watch everyone else get staggering drunk. :biggrin:
Well, I didn't want to get too gross, but dehydration is probably right, because there is a smell like vitamins (although I am on a high bcomplex supplement - they think that I am deficient because of poor circulation and family history) Or maybe it is just the excess b vit. being flushed out of my system? I know that the survey at mrkh.org mentions circulation problems, but my dad and his mom are on b shots and I have been told that I may have to take them eventually if the vitamins aren't enough.
Wow! I had never even thought about the osteo...(cant spell) being connected to hormones. I have often wondered if I have hormone problems, (mainly because of recently appearing chin hair - argh!) but I never connected it to anything but annoying problems, not actual physical concerns.

As for allergies, I don't suffer from sneezing or anything, just a constant sinus infection that they will no longer treat (something about creating antibiotic-resistant virus?) even though I have researched and found that it could create more serious problems. The biggest problem is that nightly sinus drainage causes constant chest congestion. And during the day my head hurts almost all the time. Tylenol doesn't help anymore, so I've just gotten used to it.
So here's something for you, since you're a science/med nut. Call it a curiousity question. My first 'problem' was found when I was 3 - Dwayne's Syndrome. It is (my best understanding) when a muscle in the eye grows long and thin, rather than short and thick, leaving it unable to control the eye (whenever I moved my eyes, my left one would roll up under my eyelid). The muscle had to be clipped or removed (can't remember) and now my left eye will not turn to the left. The question is, can muscle development be connected to mrkh? What do you think, just curious.

And thank you so much for all the information. It is hard to find a doctor with this knowledge available, and when you mention any abnormality, they want to start examining you. My family doesn't want to talk about my MRKH and so they are no help with finding info and don't want to hear about any problems that may be related to it

[snoflake241]

I was spelling it wrong is why I couldn't find any info. Here is an interesting clip from national human genome research institute

http://www.nhgri.nih.gov/11508984

"In 70 percent of DS cases, this is the only disorder the individual has. However, other conditions and syndromes have been found in association with DS. These include malformation of the skeleton, ears, eyes, kidneys and nervous system, as well as:

Okihiro's syndrome, an association of DS with forearm malformation and hearing loss,
Wildervanck syndrome, fusion of neck vertebrae and hearing loss,
Holt-Oram syndrome, abnormalities of the upper limbs and heart,
Morning Glory syndrome, abnormalities of the optic disc or "blind spot", and
Goldenhar syndrome, malformation of the jaw, cheek and ear, usually on one side of the face. "

It also occurs at about the same stage of development as MKRH -- 3-8 week of pregnancy.

So know I now that two of my syndromes could affect my hearing. Hey, if I find 4 more syndromes, do I get the steak knives? :biggrin:

:help: Any suggestions for a reeeeeaaaaaaalllllllyyyyyy bad sinus headache?

[Dana Gold]

quote: "Any suggestions for a reeeeeaaaaaaalllllllyyyyyy bad sinus headache?

Yes, ....ease up on the moonshine :biggrin: ...just kidding :rolleye11

On a serious note:

http://www.healthandage.com/html/res/com/ConsConditions/HeadacheSinuscc.html

Dana

[snoflake241]

Actually, my headache just disappeared. I didn't even notice it was gone until I was waiting on a webpage to upload and bam, no more headache. Very weird. Mais normale pour moi...

[Glenn]

:sign16:
While some of your problems might be related to MRKH, they could have other causes. Another possibility to consider is food allergies.

Most of my family was recently diagnosed with allergies to really common stuff like diary products and wheat (specifically, the gluten in wheat and oats). My stepdaughter was convinced she was allergic to tomatoes, since she couldn't eat Italian food, but later found it was the pasta causing the trouble...

What you might be able to try - I don't know if you can find this stuff in the boonies :rolleyes2 is to skip dairy products for a couple weeks and see if it helps. If you can find it, you can substitute soy milk for regular milk, for instance.
Or try clearing wheat from your diet for a while - rice and corn are fine. Sometimes you can find pasta made from rice or a grain called quinoa.

Oh, and too many vitamins can definitely make for funny-smelling pee. :)

Glenn