[0dayin]

Hello and good day. I first want to thank everyone here for a wonderfully helpful site. I have browsed through the forums and read a lot looking for some possible answers to my own situation. Though I have found a few things related, nothing really stands out at me. What I did find however was a very friendly and helpful community. For this, I wanted to say thank you in advance.

Let me introduce myself. I am a thirty-nine year old woman and currently retired. I have three children, 19, 16 and 14. All were c-section due to high risk and other problems. I was lucky to have a doctor that was willing to wait and see if I could have my last two natural, but that did not prove a viable option. I am however thankful for three healthy boys.

Through out what I am about to explain, I had tried to stay as active as I could. Gymnastics, swimming, long distant running, body building, rock climbing.. anything I could do to stay active and "prove the doctors wrong".

Medical history is a bit shaky, as I have started to doubt some of what I was told by a plethora of physicians over the the years.

Other then bad teeth (which I brushed and flossed three times a day), my first medical problem I had was a (as i was told) a hiatal hernia when I was 8 years old. I remember having extreme abdominal pain when I was a child, though surgery was not done until I was 8.

Shortly after that, I am guessing around 9 or 10, I started having migraines. Though I was not aware what they were, all I knew then was that I had extreme headaches that would cause me to (odd i know) hide under my bed crying because they were so bad. Nausea, dizziness and nose bleeds tended to accompany them. I would get these every 1-3 months, however as I got older the frequency increased. My mother had sent me to doctors when I was young and they said I was just looking for attention. My mother was satisfied with that. I do not remember any answer for the nosebleeds. The migraines and eventually constant headaches became a lot worse in my early teens.

At 15 I had started getting them so bad I would pass out. I remember the first time this happened, I was rushed to UofM medical center, however they could not find any problem other then lowered blood pressure and glucose levels. The doctors there said I might have diabetes and put me on a diabetic controlled diet. I left the hospital with (my first) broken arm, collarbone and the migraine still.

By the time I was 17, my migraines were occurring about every month though were worse during my menstrual cycle. At this time I was attending college, and had to take several classes at home due to the pain.

Eventually I got used to it, and learned to take evening classes and work at night as I was able to. This helped somewhat as I realized that I was sensitive to bright lights. The summer of my 18th birthday, I had my first documented seizure while at an auction. Again, I do not remember anything other then my killer migraine and extreme sensitivity to pain. The doctors told me that I had epilepsy at this time, and that was the cause for it. They also said I had diabetes again and put me on (Humulin?) 4x a day, 75 units a day.

My problems got worse when I became pregnant the first time at 19. I had my first miscarriage along with the worse seizure I had yet to that point. The doctor then told me that I did not have diabetes and instead high blood pressure and that was the cause for my seizures, migraines, almost continual headaches and my miscarriage.

I had one more miscarriage, then my first successful son the end of that year. However, I was having grand mal seizures about once every 2-3 months.

... Long story short, I have seen many many doctors (neurologists, cardiologists, endocrinologists, and more) and each one has told me something different. Everyone says there is a problem, however no one has been able to find out what was wrong.

I also started suffering from extreme back pain in my mid 20's that only got worse.

I have been diagnosed with diabetes, mitro valve prolapse, lupus, cystic fibrosis (why ever did they think that?), degenerative bone and disc disease all the way up to MS. I pretty much gave up going to doctors in the last 5 years because of all the medications they had me on by the time i was 30. I really could have opened up my own pharmacy. (I now am only taking aspirin when my chest hurts, and excedrin migraine when my migrains get too bad.)

I have CT scans, MRI's, bone scans (all with and with out contrast), I have had several spinal taps (and yes they do hurt no matter what the professionals say), I have had every type of 'scopy possible. And each time they tell me they found something else wrong.

I have changed my opinion on my own heath care over the years and decided to just do the best I can for myself, live life the best I am able and be as happy as I can. This came about after a rather bad bout of depression when I could no longer work.

I do not believe I have tons of medical problems going on at once, there has to be an answer someplace. I may have one or two that are unrelated, but there has to be a common thread.

So, here are my symptoms. (the ones that are the worse for me are in red)

Muscle weakness (and knots in the muscles- sounds weird I know), pain and spasms- primarily in the shoulders radiating down the arm and in my legs (mostly on the right hand side)
Frequent fatigue,
Constant headaches with frequent migraines
Blurred/double vision, changing visions (can change from -4.75 to -5.75 in six months and back to 5.25 six months later)
Spots or "fuzzies" in my vision (constant since I was around 13 or so)
Seizures, (I do not remember when I have them, only the headache and neck pain afterward.)
Lower to mid back pain, with loss of leg movement/control, incontinence (when it gets very bad)- The more I move lift and especially walk, the worse it gets.
Frequent subconjunctival hemorrhage (new symptom-is not painful though coincides with migraines- in the last 3 months)- was told this was caused from straining, sneezing, coughing.. all the way up to high blood pressure.
Weight gain
Swollen and sensitive glands in the side of the neck. (possibly diet related and not related to actual health problem?)
Hot and cold flashes (hot=post menopausal.. cold= same thing?) (when I get cold, nothing can warm me up.. was told it was low blood pressure *sighs*)
Constant ringing in my ears (gets worse when I have migraines).

Okay, there is what I can think of off hand.

I have not worried too much over the last 5 years, since I do not think it would matter too much after all my doctor visits, emergency room visits and hospital stays (from 1 to 4 weeks at a time.) Basically, I despise going into the hospital and do not complain much at all at home.

I have found ways to keep myself busy from web design, 3d graphic design, support group and now working as lead designer on a mmorpg. However, my husband has become increasingly worried about me, and I guess his concern has become a bit infectious. Since the subconjunctival hemorrhage has started he now wants me to go either to the er (when he notices it) or see another physician.

Frankly.. I would rather go with some idea of what it could be.. instead of getting another new diagnosis. I dont know. I guess perhaps I am prattling on now. However I do not know what to do, or where to go. We have moved from Michigan U.S. to Alabama U.S. in the last three years, and the last physcian I saw when I was in the hospital (not by my choice... I was unconscious) said I had cancer and diabetes and fibromyalgia.

I do know this sounds like a lot. I went to see the doctor the ER physician recomended for me, and he thought I should see a psychologist .. until he got my records from Michigan the next week.

Myself, I would rather keep all these problems to myself and be happy with my family and new work over the net. However, I promised my husband I would do something. I guess this is the first step.

Thank you for "listening" and I appreciate it greatly. If anyone has any idea of what could be going on, I am all "ears". If I must see another doctor, I would like ot know what I am getting myself into, and not just another diagnosis and more medicines. (I hate taking pills.)

Thank you again and peace,
Odayin

[0dayin]

Sorry for another post. It will not be as boring or as long.

I am not sure if this is reliant or not. However, I forgot to mention that I was diagnosed with endometrium cancer and endometriosis. I had a complete radical hysterectomy 13 years ago. I also had three partial mastectomy between 1989 and 1998. Also went through a colectomy as well the last surgery.

Okay, I am done now. I am sure you are relieved. I cannot think of anything else that might be important over all right now.

Thank you again,
Sarr (Odayin)

[tied]

i am sorry for what you are going through. i am mostly off doctors myself especially specialists. misdiagnosis is my main concern too and i have had an in home pharmacy in the past. i felt much better not taking the drugs.

one thing you might try to regain control is to pick a food and stop it for several weeks till it is out of your system. then have some and see if you feel worse. repeat with other foods. my culprits are white flour and corn.

chin up - you sound so strong.

[0dayin]

Thanks. I try to be strong, though was not always in the past. I had a very rough go when I could not work any more. I still have the scars to remind me to keep my chin up and keep smiling. I sort of forgot at that time to look at all the beautiful things around me. Luckily that event kicked my head and heart into gear, if you will.

As far as foods.. i have not really tried that. Could something as simple as a food allergic intolerance do so much? I am allergic to menthol and vine fruits (melons, squashes, etc), however, not sure about other things. All other allergy tests have been negative.

What I do know is that my husband is getting more and more concerned over my health the last few months and is pushing for me to see a physician down here in Alabama. That kind of scares me. I have had worse luck when I first moved down here then I have anywhere else.

I have to agree on the meds. They had me at one time so full of them I was a total zombie. I think a lot of that also contributed to my depression I had. I know some of it may have been caused chemically (pain meds, muscle relaxers, beta blockers, steroids and more!!) .. however I know some of it was also caused by my own perception of not being able to be productive. The more I became fatigued and wore out, the more depressed I would get because I could not do something like I used to.

Well, Thank you for responding. Perhaps someone will have some idea. I will talk to my husband about this and see what we can come up with. Flour eh? that would be tough.

Peace,
Sarr

[Jomar]

Have you considered homeopathy or a naturopathic Dr?
They tend to look for food, blood, system imbalances and such.
Usually more in depth on the whole body and with using more natural helps.

a list of info links-
http://www.google.com/search?hl=en&c...ic&btnG=Search

[0dayin]

I will look through those links and see what they are about. I have also sent those over to my husband (he is working out of town right now) and see what has to say.

Thank you so much.
Peace,
Sarr

[Dejibo]

You sound alot like my daughter. She was miserable as a child, and had constant tummy aches, and upsets. Her health always seemed so fragile. We consulted MD after MD, and each one added to the growing list of diagnosis' She had more meds than a local pharmacy, and each one had its own list of side effects. She was miserable. We consulted someone about Celiac disease, or Gluten intolerance. We cleared out the cabinets, and went gluten free. It was HARD at first. We were not used to such foods, and this was in the days when no gluten free isle could be found in the local supermarket. We worked hard to remove all gluten from her diet, and within a month, she was getting her old spark back. Her blood sugar normalized. Her moods stabilized. She started sleeping again. She was able to stand long enough to take a shower, without having to be held up. With each passing week, we saw her hair change, and her outlook change. She went from being so sickly, and collecting diseases to feeling like a teenager should. it was really scary.

I am NOT saying that you have this disease, but it is one of the great imitators. The thing with this disease is that just following the diet will either make a drastic change in your life, or it wont. It doesnt hurt to try for a month, and see how you feel.

There is a celiac forum right here, or you can go to Celiac.com or Celiac.org. both offer much information about the disease. Allergies and reactions to foods is so scary. Celiac is when your body cant absorb the proper nutrients from foods. Once the offender (gluten) is removed, your intestines heal, and you can start absorbing the good parts of food again. your body gets a chance to heal and repair itself.

I hope you feel better soon.

[0dayin]

Well, I have gone and had a few things done already. Sugar levels are normal, though a bit low. This doctor here said that I might not have diabetes but just simple hypoglycimia. <sighs> But, the sugar levels were in the semi normal range, so that is good.

He did refer me to another doctor again, and two specialists. We shall see, waiting on approval for the specialist and then I will find out more perhaps. I did ask them about the naturopathic physician and this doctor said they never heard of that nor anything related to. Oddly enough I have, and we had a few up in michigan at the u of m clinic. But, this is normal for what I have experienced since I moved down to alabama.

Other then that I am still about the same. I will look into this celiac, see what it is about and ask one of the physicians once i see them, about it. Thank you for the suggestion. I still swear there has to be something that is the primary cause for this. It is not logical that I would have so many different problems, such a plethora of diseases all at the same time. Then again, I am a bit stubborn.

Peace,
Sarr

[ConsiderThis]

Hi Odayin --

Gosh, it made me so sad to read about the doctors saying you were just trying to get attention. (((((((Odayin)))))))

The next most striking thing you wrote was the thing about the nose bleeds... I mean, striking to me.

I have found that when I am low on vitamin B12 that I have nose bleeds, I used to have intensely heavy periods, and my gums bleed.

Now that I know about vitamin B12, if I find the least amount of blood on my kleenex I immediately use a methylcobalamin lozenge.

I used to have horrid headaches, though they weren't migraines, at least not often. I would regularly get them when I was under stress, and I was mostly under a lot of stress at work. They used to buy Advil for me the way they bought sugar for everyone else to use in their coffee breaks.

Now I know that Advil weakens the jaw bone and is not good to use as much of as I was using.

I use magnesium now, to help relax muscles. It feels strange to get a headache (which I don't do nearly as often anymore) and to not take an Exhedrin or Tylenol or Advil... but to instead take a magnesium capsule. I think the tablets work equally well, by the way.

I'm under huge stress now and I've had such bad tightening of my muscles in my legs that it feels dangerous to walk, as if the sharp pain that causes my legs to start to buckle, will actually tumble me to the floor. It's really hard to keep on top of stress. I mean, I know I have to use more methylcobalamin to handle increases in stress, but it's hard to do it day after day... and I totally forgot that if my legs were feeling like the muscles were all knotted and I SOOO wished I could go for a massage, that I should be using additional magnesium... so for the last couple of days I've set my computer to remind me to take supplements more times during the day, and I am better.

But, it's very scary when ones legs are suddenly so heavy it's hard to walk... or when they are sort of crumbling when weight is placed on them... so I think that outside stress depletes B12, and then the physical results of the depletion are scary and that's stressful and even more B12 is depleted, and it's hard to believe that a simple vitamin can be a significant part of serious health problems.

I have kept notes for years, less now than I should because the stress is so overwhelming at times, so I can look at my notes and see that stress is followed by an increase in symptoms related to low vitamin B12... I have to do that, too, because I get scared that what I'm feeling is some horrible disease and it won't go away.

Only really, if I keep using methylcobalamin in significant amounts, then so far it's always been okay in awhile. I mean, I don't realize how stressful something is until I notice that I can't wiggle my toes, or that my thigh is wooden feeling, and by then my B12 must be quite depleted... so it takes awhile to feel better, but I do feel better once I take enough more methylcobalamin to set things right again.

Methylcobalamin is known to regenerate nerves. For me, it's reassuring to know that.

You might want to take a look at a list of symptoms associated with low B12 and see if there are very many that are things you are dealing with... B12 is not a dangerous vitamin, so you can take it to see if it helps and it won't hurt you. But, it's good to use lozenges because it's a complicated vitamin for our bodies to use if there's any kind of malfunction in our digestive systems... and it's good to use the methylcobalamin because it's much more effective than the cyanocobalamin form.

I haven't tried the hydroxy form, but people speak highly of it.

(((((((((((Odayin)))))))))))

,

[ConsiderThis]

Originally Posted by 0dayin

Sorry for another post. It will not be as boring or as long.

I am not sure if this is reliant or not. However, I forgot to mention that I was diagnosed with endometrium cancer and endometriosis. I had a complete radical hysterectomy 13 years ago. I also had three partial mastectomy between 1989 and 1998. Also went through a colectomy as well the last surgery.

Okay, I am done now. I am sure you are relieved. I cannot think of anything else that might be important over all right now.

Thank you again,
Sarr (Odayin)

This reminds me that my mother had a hysterectomy when she was relatively young... and when she was older she was diagnosed with pernicious anemia, which is a rather advanced form of vitamin b12 deficiency... years ago before cyanocobalamin was discovered pernicious anemia was fatal.

Okay... why did I write this? Because I think I inherited from my mother my problems with low B12... and I've read that certain genetic backgrounds are more prone to low B12.

I think that if my hemorrhaging had gotten much worse that I would have been recommended to have a hysterectomy... My periods got much less severe after I began having B12 replacement.

.