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Forum Name: Endocrinology Topics

Question: Chronic Mystery Illness for over 14 years


 ChronicMystery - Fri Nov 19, 2004 12:01 am

Hello!

I'm seeking help in trying to find a connection between the chronic illnesses I have experienced over the past 14 years. I am scheduled to see a metabolic specialist in 2-3 months and for the first time I am investigating my numerous conditions as the result of a single condition rather than just "bad luck".

It all started around 15-16 yrs. of age, with endometriosis - followed closely by irritable bowel syndrome, fibrocystic breasts, costchondritis, cfs, rapid tooth decay (would result in dentures by age 25), kidney stones, bladder infections, migraines and chronic headaches, mild conscious seizures (simple), low-grade fevers, mental problems, persistent lesions and skin infections, loss of appetite, perleche, sciatica and low back pain, carpal tunnel syndrome, and lots of small annoying symptoms along the way. My worst episode lasted about 3-4 years and then diminished somewhat, only to return in the past 2 years after the birth of my son & a hysterectomy following shortly after. Not only are all of these symptoms recurring with vengence, I can add the following to my growing list: hair loss in a diffuse pattern, chronic back and neck pain, vision problems (depsite normal eye exam), arthritis-like symptoms, shakiness, severe muscle fatigue. The list goes on, is growing and this is the worst I've had it. More strikingly is memory problems in the form of short-term memory loss and forgetting the names of objects. Unfortunately, I have not received proper medical investigation over the years due to living in a small town with limited resources and even worse - limited minds. The most I could get is general bloodwork (always "good") and a pat on the back. I'm likely missing a lot of extra symptoms - there are just too many to count.

I have a theory that my conditions all share the common thread of being inflammatory disorders. I do not wish to diagnose myself, but I feel that sometimes a patient has no other choice but to investigate for themselves when doctors fail to.

So I have a few questions I hope some kind doctor will answer:
- What types of diseases or disorders are reflective of this kind of chronic inflammatory-type illnesses?
- Do you think I'm on the right track by looking at the long-term conditions and symptoms as a whole, or is it indeed VERY possible that I just have "bad luck"?
- Any other insight, advice or ideas would be greatly appreciated.

Thank you for your time!

C.
 kat - Sun Nov 21, 2004 10:16 am

hi there, im not a doctor...just someone else on the board looking to see if a doc can help! i just read through all of your symptoms and it sounds a lot like ME/CFIDS, i guess which is like CFS or the same...but there are a super long list of symptoms involved in the illness. maybe u could ask about lupus? to see if you could be tested for that also. i hope that you can get some help and feel better after such a long time xxxx
 babyluv2004 - Sun Nov 21, 2004 12:17 pm

:roll: Hello, I too suffer with some of the same symtoms you have, but I have only noticed mine within the past year. I hvae short term memory loss and trouble saying things. I know what I want to say, but can't get it out of my mouth. I cannot sleep. I have constant low back pain and neck pain. I also have places on my body that feel like I have had boilong water poured over me. They are very sore to the touch, yet at the same time they feel kind of numb,like when you have had a place numbed and you can feel the pressure of touch. I have severe headaches, feels like lightening bolts striking in my head. I develop sore places that just come and go,may last 1-5 days. Also have constant joint pain . I have seen doctor on top of doctor with no real clear diagnosis. I had a positive result for rheumatoid arthritis, however my neurologists said it was not enough to worry about. The last thing I have been told is that I have an auto-immune disease and that all I can do is treat the symptoms and live with it. Oh, I am also very fatigued all the time. If anyone has any information, I welcome anything! I am at my wits end with this. I am only 32 and I feel like I am 90 and on my last leg, I'm too young to feel this way. Thanks, Babyluv
 ChronicMystery - Mon Nov 22, 2004 12:31 am

Thanks Kat,

Actually I tend to think it is Lupus based on some very specific things (some not even listed here), though I'm keeping an open mind. And this time I'm going to push the doctors like never before - they're not getting off so easy this time :)

C.

kat wrote:hi there, im not a doctor...just someone else on the board looking to see if a doc can help! i just read through all of your symptoms and it sounds a lot like ME/CFIDS, i guess which is like CFS or the same...but there are a super long list of symptoms involved in the illness. maybe u could ask about lupus? to see if you could be tested for that also. i hope that you can get some help and feel better after such a long time xxxx

 ChronicMystery - Mon Nov 22, 2004 12:37 am

Hi Babyluv,

Sounds like we're in the same boat - or at least floating in the same ocean. It seems irresponsible for a doctor to say you have an autoimmune disease without: 1) identifying which one 2) not offering any relief and 3) telling you to live with it. No wonder you are discouraged. When a doctor belittles a patient's symptoms like this it is just cruel. I understand they can't allow themselves to feel any sort of empathy for patients, but geez... a little humanity wouldn't hurt.

I wish you best of luck

C.

babyluv2004 wrote::roll: Hello, I too suffer with some of the same symtoms you have, but I have only noticed mine within the past year. I hvae short term memory loss and trouble saying things. I know what I want to say, but can't get it out of my mouth. I cannot sleep. I have constant low back pain and neck pain. I also have places on my body that feel like I have had boilong water poured over me. They are very sore to the touch, yet at the same time they feel kind of numb,like when you have had a place numbed and you can feel the pressure of touch. I have severe headaches, feels like lightening bolts striking in my head. I develop sore places that just come and go,may last 1-5 days. Also have constant joint pain . I have seen doctor on top of doctor with no real clear diagnosis. I had a positive result for rheumatoid arthritis, however my neurologists said it was not enough to worry about. The last thing I have been told is that I have an auto-immune disease and that all I can do is treat the symptoms and live with it. Oh, I am also very fatigued all the time. If anyone has any information, I welcome anything! I am at my wits end with this. I am only 32 and I feel like I am 90 and on my last leg, I'm too young to feel this way. Thanks, Babyluv


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