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Old 07-27-2011, 05:43 PM   #1
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Has anyone had so many autoimmune disorders

It is down right scary. It started when I was in my late 30's. I beat myself up over it all the time because I feel I did something to cause it. I was not very good to my body. At 38 I got high blood pressure, wasn't regular with meds cause I would forget. A little older I got psorisis maybe around 40. By the time I was 48 I was having female problems and went to doc and he found a 7lb fibroid tumor, had to have a complete hysterectomy. Was put on all kinds of meds including hormones. I was afraid of all the meds and feeling bad. My gyno insisted on the hormones and injected me with premarin before I even woke from surgery. I was later on a hormone that include testosorone. Feeling bad so I stopped everythiing all at once cause doc would not listen that I was feeling poorly. Well within a week my neck swell. Found a nodule and had a partical thyroid removal. I was told by the surgeon that if the doc would have waited it would have resolved itself. It was some kind of imbalance and that was why I had so much fluid in my thyroid. I do have hashimottos.

The next year moles were appearing on me, not many but I felt I should have it checked out. Well they removed two because they felt they were abnormal. The following year I had a breast lump removed. Then the next year they found another but decided to leave it for now. Last year I had cataracts removed. I am only 54. Now I am having stomach problems. I had an upper and lower GI done and they found and removed polps last week ( I am waiting results. A few days after that procedure I started having severe pain under my left breast. He decided to do a HIDA scan. They found I am at 28% and the tech told me the doc usually removes the gallbladder with that kind of report.

Needless to say I am very scared and do not want a surgery. I feel I am being taken apart piece by piece. I am hoping I find a solution to removing my gallbladder. Had anyone had these back to back issues? Does anyone have any input to what options I have to surgury again. Thanks for any help you can offer. Karen

 
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Old 07-27-2011, 08:43 PM   #2
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Re: Has anyone had so many autoimmune disorders

Karen,

I really feel for you. I have had psorisis since I was in grade school. Back then they didn't do much for you. I am now 56 years old and I have had 30 surgeries since 1990. Everytime I turn around it is something else. I have had polups removed, thyroid surgery that they found had cancer after the fact, breast cancer, I am fine now. I have had joint replacements in both knees more than once, took them twice to have a hysterectomy. I have poly arthritis plusI have a very rare disease that I grow tumors in the lining of the joints in my knees.
I also had to have a partial pancreatectomy and while he was in there he took my gall bladder. Don't dispare you will get better. I will not let it get me down.
I am a survivor and I will be damned if it will get the best of me. One day at a time.
Good luck,
Ann

 
Old 07-28-2011, 05:50 AM   #3
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Re: Has anyone had so many autoimmune disorders

Quote:
Originally Posted by California Ann View Post
Karen,

I really feel for you. I have had psorisis since I was in grade school. Back then they didn't do much for you. I am now 56 years old and I have had 30 surgeries since 1990. Everytime I turn around it is something else. I have had polups removed, thyroid surgery that they found had cancer after the fact, breast cancer, I am fine now. I have had joint replacements in both knees more than once, took them twice to have a hysterectomy. I have poly arthritis plusI have a very rare disease that I grow tumors in the lining of the joints in my knees.
I also had to have a partial pancreatectomy and while he was in there he took my gall bladder. Don't dispare you will get better. I will not let it get me down.
I am a survivor and I will be damned if it will get the best of me. One day at a time.
Good luck,
Ann

 
Old 07-28-2011, 05:54 AM   #4
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Re: Has anyone had so many autoimmune disorders

Thanks Ann, It gets lonely. I feel like I am the only one. I have a cousin I speak with frequently and she just says whats wrong with you. I have only had a hysterectomy years ago and I am almost 70. I told her that things happen differently to different people. I believe it has something to do with having hashimotto's. I am now afraid to do anything. It helps hearing from you. It's not that I'm glad these things happened to you but it is good to know that I am not alone. It gets lonely when everyone around me is healthy. Thank you and keep in touch. Karen

 
Old 07-28-2011, 04:08 PM   #5
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Re: Has anyone had so many autoimmune disorders

Ann,

I am 29 and know how you feel.

I have Confirmed- Crohns, IBS, errosion in stomach, Hyatal Hernia, Depression, PTSD, Diverticula, Degenertive artheritis, Anxiety disorder, Insomnia, endometrosis, Gull Stones

Possibles - Lupus (positive blood test but not yet confirmed) Rhumatoid atheritis

I often feel as if I am falling apart and wonder what will be next. I often call my self a "walking medical catastrophy". I hope that someday they will find a cure for all of this and I can live a normal life.

 
Old 07-28-2011, 08:55 PM   #6
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Re: Has anyone had so many autoimmune disorders

Quote:
Originally Posted by Ressamm20 View Post
Ann,

I am 29 and know how you feel.

I have Confirmed- Crohns, IBS, errosion in stomach, Hyatal Hernia, Depression, PTSD, Diverticula, Degenertive artheritis, Anxiety disorder, Insomnia, endometrosis, Gull Stones

Possibles - Lupus (positive blood test but not yet confirmed) Rhumatoid atheritis

I often feel as if I am falling apart and wonder what will be next. I often call my self a "walking medical catastrophy". I hope that someday they will find a cure for all of this and I can live a normal life.
I love the "Walking Medical Catastrophy"! You can't let it get you down. I went to a Nerouoligist a few times who told me he wished he could only study me. He wanted to know the hows and whys of everthing I have had. I will not give in to it. Two years ago I had 52 dr's appointments and I told myself that it would not happen again. My biggest worry now is my weight I am going to loose if it kills me. I am pretty active but I have put on an extra 50 lbs in the past 15 years. I know I will feel better and it couldn't hurt my health eilther.

Just don't let it get you down. If you take one step today take two tomorrow. If you can't get enough exercise without pain try waking in a warm pool or join a water arobics class. I always feel better in the water. As for the intestinal problems I don't know what to tell you. I was there but it all got better after my pancreas surgery. I don't have near the problems that I used to.

Good luck,

Ann

 
Old 07-28-2011, 08:59 PM   #7
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Re: Has anyone had so many autoimmune disorders

I wonder what we did to cause these things besides being born. I got a call today from the doctors office to call them for an appointment. I am scared to call. I have pending blood, HIDA scan results and the polps they removed and tested to yet hear about. I wonder why they got the results of the biopsy so quickly. Makes me think bad thoughts.

 
Old 07-28-2011, 09:59 PM   #8
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Re: Has anyone had so many autoimmune disorders

Well I hope everything goes well. My father died of colon cancer and I was on the one year plan for colonoscopies for the first 5 years. I finally made it to the 5 year plan. I have 3 years to go and then maybe on to the 10 year plan. Maybe it is good news this time. We can always hope. Keep us informed.

Prayers,
Ann

 
Old 07-29-2011, 05:09 AM   #9
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Re: Has anyone had so many autoimmune disorders

my dad died of colon cancer, my mom and sister died of lung cancer. My mom and sister were 60 and 46 respectively. My dad was 80. I am really scared. I have been trying to get a doctor to listen to me for years. I went to this doc twice and he did something right away. Wish I had him a few years back. the one gastro I had for 2 years he kept losing my records or tests, I finally had enough and changed docs to a internest who could not seem to follow up on anything. Then I found this doc. A lot a money and a waste of time later.

Last edited by jkarenc; 07-29-2011 at 05:12 AM.

 
Old 07-29-2011, 05:13 AM   #10
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Re: Has anyone had so many autoimmune disorders

did you have anything show up on you colonoscopies?

 
Old 08-29-2011, 02:57 PM   #11
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Cool Re: Has anyone had so many autoimmune disorders

Oh I feel for you~ AND yes I, my sister and daughter are all "falling apart". autoimmune diseases are hard to deal with sometimes. Sometimes you're fine, other times you cannot believe that it will ever get better! Weather effects it, stress, doing too much, not doing enough, food etc, etc. All I can say is "hang in there" rest, and if you have faith then pray. Find a good dr and if you don't like the one you have, find another until you are happy with the one you have.
I was diagnosed with degenerative disc disease at 24, that's it. At around 35ish I started to have trouble getting out of bed, severe pain when I tried to walk, tired all the time. Then, it got better for about 10 years until I hit 55 and it came back with a vengence! Did I mention I had psoriasis and had around 3 really severe bouts where it covered me from head to toe? It was Guttate not Plaque which is rare. My fingers started twisting and ,y joints stared going at about 40 yrs old. I've always had small patches here and there of the psoriasis and had it pretty badly in my ears of all places. My daughter in the meantime was diagnosed with fibromyalgia, had several back surgeries and now is RA positive. My oldest granddaughter has juvenile onset RA and diabetes and the younger one is also diabetic. I fell at work and haven't been without pain since the fall, although it was their fault that I tripped over a cord, I just had my MRI and it looks like a rat was eating at my vertebrae! It is so weird..there are bulging discs, thin little discs, thick discs, the lumbar region looks like an S and the vertebrae that looks "eaten" looks like it would snap with a finger! it doesn't even look human! I don't know if Worker's Comp is going to help me when I look like that, but, I was working, walking, standing and sitting just fine. In fact I was a " shop-a-holic, I could stay in stores for hours. I fell in November and since then I can't walk for more than 15 or 20 minutes without intense pain, everyone got visa cards for Christmas which I would NEVER do before because I though it so impersonal! I am only 58, single and thought I'd work until I was at least 68 or 70, I felt great before this! And looked pretty good, too. Now I've put on weight because I can't get around. I've done lots of physical therapy and I love pool therapy, wish they'd give it to me forever!
Anyway, do not give up, keep exercising and get into pool therapy! It is the only way other than pain meds that have given me relief and I would say it gives more relief than meds except for anti-inflammitories, you absolutely need those with autoimmune problems because of the inflammation! See if you can find a good Physical Therapist that includes Aqua-Therapy and go for it at least 3 x's a week no matter how reluctant you are to go anywhere. That's my relief from all this, and my tens unit and heating pad!

 
Old 08-29-2011, 03:07 PM   #12
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Cool Re: Has anyone had so many autoimmune disorders

Oh I feel for you~ AND yes I, my sister and daughter are all "falling apart". autoimmune diseases are hard to deal with sometimes. Sometimes you're fine, other times you cannot believe that it will ever get better! Weather effects it, stress, doing too much, not doing enough, food etc, etc. All I can say is "hang in there" rest, and if you have faith then pray. Find a good dr and if you don't like the one you have, find another until you are happy with the one you have.
I was diagnosed with degenerative disc disease at 24, that's it. At around 35ish I started to have trouble getting out of bed, severe pain when I tried to walk, tired all the time. Then, it got better for about 10 years until I hit 55 and it came back with a vengence! Did I mention I had psoriasis in my 20's and had around 3 really severe bouts where it covered me from head to toe? It was Guttate not Plaque which is rare. My fingers started twisting and my joints stared going at about 40 yrs old. I've always had small patches here and there of the psoriasis and have it pretty badly in my ears of all places. My daughter in the meantime was diagnosed with fibromyalgia, had several back surgeries and now is RA positive. My oldest granddaughter has juvenile onset RA and diabetes and the younger one is also diabetic. I fell at work and haven't been without pain since the fall, although it was their fault that I tripped over a cord, I just had my MRI and it looks like a rat was eating at my vertebrae! It is so weird..there are bulging discs, thin little discs, thick discs, the lumbar region looks like an S and the vertebrae that looks "eaten" looks like it would snap with a finger! it doesn't even look human! I don't know if Worker's Comp is going to help me when I look like that, but, I was working, walking, standing and sitting just fine. In fact I was a " shop-a-holic, I could stay in stores for hours. I fell in November and since then I can't walk for more than 15 or 20 minutes without intense pain, everyone got visa cards for Christmas which I would NEVER do before because I though it so impersonal! I am only 58, single and thought I'd work until I was at least 68 or 70, I felt great before this! And looked pretty good, too. Now I've put on weight because I can't get around. I've done lots of physical therapy and I love pool therapy, wish they'd give it to me forever!
Anyway, do not give up, keep exercising and get into pool therapy! It is the only way other than pain meds that have given me relief and I would say it gives more relief than meds except for anti-inflammitories, you absolutely need those with autoimmune problems because of the inflammation! See if you can find a good Physical Therapist that includes Aqua-Therapy and go for it at least 3 x's a week no matter how reluctant you are to go anywhere. That's my relief from all this, and my tens unit and heating pad! You can go on-line and purchase a portable tens unit for 50 bucks and wear it all the time if you need to. They can implant them in you, but then you can't have MRI's any longer because they mess with the magnet and mess up the pictures. They usually sell these great ice pads that are about 2'x2' and you stuff them in the freezer then lie on them with the tens hooked up after stretching..and get a book on stretching and do them! Go to Pilates and let them know your problems and they will go easy on you, also Yoga. Stay away from high impact exercise. You can jog in the pool and not hurt yourself, but not on land. And I think I should end now because I could go on and on..all I want to do is WORK! I have been off 5 months and am going crazy! Take care!

 
Old 08-29-2011, 07:04 PM   #13
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Re: Has anyone had so many autoimmune disorders

I have asked my doctor for anti inflammatory drugs and he doesn't want to give them to me. I feel my problem has to do with inflammation. I had an ache in my mid part of my back for years. I had so many tests for them to find the problem. It was terrible. I was only 30 years old at the time. Finally the doc gave me an anti inflammatory drug and it went away. It actually went away for a few years. When it did come back they found a 7lb fibroid but that was when I was 47. The ache went away. Now I have an ache in the front lower portion of my stomach, close to my hip. I just feel an anti inflammatory drug would help. I have psorisis also on my hands, elbows and knees. I have had that since 40. I sometimes just want to cry. I hardly ever sleep because of the ache. I don't wish this on anybody Thanks for sharing. Even tho I am sorry you have difficulties, it is good to know that I am not alone. I gets so it seems I am the only one with problems. Karen

 
Old 09-02-2011, 02:49 PM   #14
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Re: Has anyone had so many autoimmune disorders

I was in very good health till age 48. I was diag with polymyositis then, and things have just gone downhill. At 49 needed a complete hysterectomy, had rectal surgery. I had psoriasis for as long as I can remember, a few years ago was diag with psoratic artheritis. Have osteo artheritis in the neck, spine, hips and knee joints. I also have hypertension, and just recently found out I have postural hypotension, have a high reading while sitting and my blood pressure drops when I stand. I also have a thyroid disease. I suffer from depression and have for the most part of my life. I have chronic pain issues. I take morphine, for the pain and many other meds for the other conditions. I had SADS, A few years ago my husband died, he was 60 and he was the one to help when I was going through a bad spell. I am attending a Mood Disorders Clinic weekly, and a Pain Clinic. I do not sleep well with the pain, I do not have an appetite, and I am fatigued, my polymyositis has damaged my muscles, find it hard to walk and have to do everything myself. Have no family support, I feel abandoned by family, I am struggling to carry on day by day. I do not know how I can keep this up much longer, it is no way to live.

 
Old 11-01-2011, 03:33 PM   #15
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Re: Has anyone had so many autoimmune disorders

I went through all the wondering. Pick up the phone, make the appointment and go for the results quickly. The longer you wait, the more you Google, the worse anxiety you will have. I know, I've done it. And, I am about to go through all the tests, blood and more, again, because no one can figure out what is wrong with me. I am 42. I'm about to ask to rescan my lungs again (I smoked for 26 years). The scan we did last year was clear but I still have issues. I have GI issues, going for an upper GI and colonscopy Nov. 17, back again the neurologist. I feel you're pain in this quest. No one wants to walk this road. I have a 6-year-old who has severe learning disabilites so just the fear of something being wrong and not being around for her has caused me to go on Xanax for my panic attacks. Fear of the unknown is the greatest fear of all. Best to think of it like a wall of fire that you to run through as fast as possible. Last year the docs found a monoclonial protien, made me redo the test, turns out it was a lab error -------- I was was mad that I quit going to the doctor for six months. However, my problems are still here and now impacting my stomach. I am going for broke to get an answer. Every rule out gets you closer to something real.

 
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