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mommy_em 04-22-2006 04:21 PM

10 years and steadly progressing any help please?
ok I am going to try and be as complete as possible in this, because I really do need help or a direction to look into. This has been on going since I was about 13 and just esculating as time goes on. There are some things that I might miss, because well it has been almost a 10 year process now to even get a doctor to take me seriously. And to be honest I am tired of hearing I don't know, maybe it is just stress, it will pass, just being blown off, or anything like that. And well Maybe is not a word I want to hear anymore.

When I was 13 is when the first of these on going sysptoms started. I started having horrible fatige and migraines. I have been dealing with both of these since that time and neither show a sign of ever just going away. When I say fatigue I mean to the point that just getting out of bed took all of my energy and well I didn't make it to school on those days. I didn't have energy, I didn't want to do anything, and just thinking of the simple task like going down stairs to eat was almost to much. My doctor told my dad to test me for drugs, cause that had to be it, then they blamed it on my weight. I have been heavy set since I was about 4 or 5. Well I didn't have the patients to be told I was lying so I just delt with it, my dad being a single father didn't have all the time in the world to keep tabs and I became good at hiding it in small and exhausting spurts. By the time I was 15 though not only was I having the fatigue and migraines more sytompts started showing. My hands would swell and stiffen, 3 times I was started on treatment for juvenile arthitis only to have it just disappear without any reasoning what so ever. I also had sever pain in my hip joint and knee. They would give me pain pills or take an xray and say everything was ok and to go home. Everything wasn't ok though, it hurt so bad I could barely walk or bend my knee. Like my hands though it would just disappear. Again they blamed my weight and said I needed to exercize more. Well even though I was over weight I could keep up with the skinny girls. I loved playing street hockey and my position was always forward. Wich ment I moved a lot. I was also addicted to swimming in the summer, so how could it be more exercize? Well then they started worrying that somethign was causing my weight problem but nothing came back as a conclusive answer. On an average day I would walk a total of about 5-10 miles because I hated waiting on busses besides exploring the city as a teen what could be more fun. I was heavy but I was in shape. At the age of 15 is also when I started having hotflashes. Just like my grandmother who was going through menopause. She didn't belive me then or now, my mom does though cause I can describe to her everything she is now going through. I graduated highschool at 16, shortly after is when my migraines shifted, now they not only caused the auroas but they sometimes stole my sight completely. This year I was dignosed with migrains in my eye nerves, it was weird seeing the picuters they took. The pain was still off and on, never consistant always random. Stress was not an issue at this time for me either. I had my first miscarriage at 16 (allegic to spermicide, couldn't use hormones cause the doctor said that is what was causing my hotflashes to much estorgen again cause of my weight, cycles to heavy for an IUD I would almost hemorage and still do, condoms made sex painfull, and well tell a 16 year old to insert her diaphram an hour before sex I think it was basicaly I have no form of birth control) Around 17 something else changed, my tolerance to heat and to cold weather. My hands would turn red when cold like normal then spot white until they where all white, pale as a ghost. I also got my first butterfly rash, it was very light and not noticable but I freaked. Since then I have had 2 more. 17 was also when my stomace problems started, nausa, vomiting for no reason, and not disgesting my food at all. When I would burp it would smell like rotten eggs, and still does when this symptom is acting up. I had another miscarrage when I was 17. And all the other symptoms though not living with them daily they where spuratic. By this time my doctor told my father I was a hypocondract and it was all in my head. I do suffer from Bi-polar/manic depression depending on what doctor your talking to, and I have since about the age of 13, but I do not like being sick and I sure don't like going to the doctor. At 18 I got married, my wedding night present was a preguancy. It was rough but I did give birth to my son after serveral times of almost losing him. This is also what promoted them to find the cysts in my head, I have 2. I have one in my sinuses. At first they thought them to be tumors and because I was so far along we had to wait and find out. They didn't think I was going to survive labor and almost didn't. The next two years where a blurr, I was constantly sick and the military ended up discharging my husband on hardship because I was so bad constantly. Pain was horrible but no reason could be found and migrains laid me out for days at a time. Durning this time I also had 3 more miscarriages and 1 still birth. About 2 years ago I found the doctor I am now working with. He has exhausted everything he knows. Doing a CBC a year and half ago we found out I had a white blood cell count. He tested me for everything he could think of from cancer and lukiema to the point of having an echo cartigogram on my heart. Wich it is slightly enlarged and has random *tries to remember the word* spams or skips beats. But nothing to cause a high white blood cell count. It has been since I was probly 15 that if anyone was sick I would get it and my recovery would be twice as long and it would hit me hard. It continued to stay elvated with no infection what so ever. Unknown cause for a compromised immune system is the current term used. I have been tested for every STD, type of cancer, had my gallblader checked, my kidneys, my liver, my intestine, my stomace. I am soooo tired of tests. As of right now I have had 11 miscarriages because for a strech of time I was feeling beter and me and my husband wanted to try for another kid. I am 22 now almost 23, in december my vomiting came back horribly. for a month I couldn't keep anything down. We have done food allergy tests too, and I watch how much MSG is in my diet wich helps the migrains but nothing helps the vomiting. Then like it came, it went away only to come back a month later. This time I found I could stomace rye crackers and swiss chesse 1 like every 4 hours or so. And then last month another "symptom" came up. A rash, it is oval with a dark rim and light on the inside the skin is scaley it almost looks like ringworm, wich they had treated me for feviously when I was younger but it wouldn't respond until it finaly went away. Well this time it only took 4 days no treatment and it was gone. Leaving the skin slightly darker then the surrounding skin just like before. Discoid rashes is what they are called come to find out. Well a friend of mine has another friend who was just dignosed with Lupus, a lot of my symptoms....ok most of them fall into that catigory. So I was tested. As much as I didn't want it to be lupus I did, I want to know what is wrong. But the test came back negitive for ANA the main diagnosing factor leaving me back at square one. After almost 10 years I thought we might have finaly found the cause, but we didn't. It is just getting worse with time. I used to be ok in the sun tan beautifuly, then I could go outside in the sun no sun block swim all day and still be pale like winter. Now I go out for a few hours without protection and I blister I don't burn but my skin blisters up. When I get a cut or a scratch it takes almost 2-3 months to heal from it, the 24 hour flu? it will be with me for about 36 hours. Any thing that is going around I catch and it wipes me. My fatigue is horrible. My migrains are being controled by 2 migrain meds (maxalt and imetrex) And we just can't seem to find what is causing any of this, and because there are so many symptoms but they never stay we are running out of places to look. So now that I have written a book, does anyone have any idea of where to point me? I am a single mother now, I am looking at losing my job cause I am sick so much, I have got to get beter I can't keep doing this and I am at my witts end. Any help would be apperciated.


DX- 04-24-2006 05:24 PM

Re: 10 years and steadly progressing any help please?

I've tried to comprehend all that you've written -- and it's almost impossible. I can't help you with a diagnosis, but I can give you some food for thought....

First -- it's entirely possible you have more than one medical problem, and you won't ever be able to explain it with one answer.

Second -- because of the drugs you are taking for some of your symptoms, you may be masking other symptoms that could provide clues. For example -- since you are taking drugs to lessen the pain of migraines, you may be masking a headache that could be the result of a fever. That's not to say you shouldn't take the drugs. I'm just suggesting that you can't overrule a problem because you don't have a symptom when you may be masking the symptom in some way.

Third -- don't rule out Lupus just because of one test. Look at repeating the test, and research to see if there are any conditions that mimic lupus.

Finally -- if you have had 11 miscarriages and you are only 22 years old, then you need to realize you may have simply exhausted your body, making it almost impossible for your immune system to keep up. No matter how exhausted you are, you need to begin taking care of your body, limiting your exposure to problems, and preventing any challenges to to your getting better, including putting off any future pregnancies until you're on your feet and strong.

schao 04-24-2006 07:17 PM

Re: 10 years and steadly progressing any help please?
Hi there--

Have you been tested for Lymes disease? The rash you described sounds exactly like the classic "bullseye rash" one would get, and so do pretty much all of your symptoms. The lymes disease board here is great--I'd suggest posting over there--they will give you great advice! Good luck to you!!!!


mefrin 05-14-2006 03:35 PM

Re: 10 years and steadly progressing any help please?
What a sad tale and from one so young. Your antecedents sound interesting and for the second occasion today on this form I am going to suggest that you look closely at your diet. Better still, and for the time being until you learn more on dietetics, try emulating the diabetic's diet. If this diet controls the health symptoms of diabetics it is also likely to have the similar affect on your health. You have probably been overloading your body with carbohydrates for the greater part of your life and to the detriment of your health. You might consider reading one of Dr Robert Atkin's books on the effect of carbohydrates. There are other more interesting books around worthy of reading. Few people seem to be aware that polyunsaturated fats (mainly vegetable oils) which might be nutritious, also have the downside of effectively suppressing the immune system; best to return to saturated fats which are more nutritious, less harmful, and very tasteful. There is a host of other factors which could improve your health but start looking closely at your diet and ramp-down the carbs and the veg oils. At your age you should be at the peak of health. The body is a self-healing organism but it can only do its task if provided with the proper nutrition.

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