Aa
Hi, I think I'm right where I should be now
I am a RN. I am 23. I have motivation, cmpassion, love for others, a dream to learn and to teach and to help. I am a daughter. I recently remembered I am human and thus powerless over the medical world in total. I don't know what else I am. I am a recovered anorexic/bulimic for almost 9 months and clean/sober for 4 years, 18 days. I love medicine and studied to go to medical school, but due to my physical conditions decided nursing was a better option and have recently applied for my dream major in nurse practitioning, Hospice/palliative care. I am also sick. More importantly, I am sick and tired of being sick and tired and feel that no one will hear me. They will listen, but not hear. It just makes no sense that I have such a range of problems, progressing in the way they have, with the tests I have had done, and with my family's history. I have low-income insurance and cant get into see a specialist, then get laughed at when I try and diagnose myslef, for I am just a nusre. Mind you I have caught several critical mistakes doctors have made just in 3 months of practicing. Some doctors, excuse me, are idiots. Currently I've given up. I cant get a doctor to see me, I even collapse at one clinic and begged. They told me to wait until December to see my Medi-Cal doctor. I went to the ER and they said the same, I am chronic, not emergent, (although I was and plan to appropriately follow up with the medical boards). I can't go out of my appartment the pain and exhaustion ae so bad. I wok up this morning my knees felt like gra[pefruits and felt so cold. This is not just fibromyalgia and is not lupus. I had a positive ANA but...to cut it short I think I have an idea of whats wrong with me, and the more inform ation I get the worse it gets. My family, rather mother, has mental stuff-issues with her own mom who mysteriously died at 50 y/o before I ever met her. My phone died-my luck-so now my only contact is internet. I sleep on the floor, I just had a bowel obstruction from chronic constipation but for some reason now have explosive diarrhea. My sebacceous gland just randomly got infected with what they thought was MRSA. I',m sorry, but this a;ll relates, Im an RN not an idiot. I am ideas. All of my symtpoms, all put together lead me to know/think of Multiple Sclerosis with cervical kyphosis causing nerve related issuse but I need to rule out non-hodgkens lymphoma or sebacceous gland carcinoma or Muir Turr Syndrome-Cancer...I have never had an MRI done, the one of all tests. I never had LDH (representing cancer or tissue damage) levels checked-of all labs. I have never had a spinal tap, of all tests. I have never had radeonucleotide imageing-the one GI test they never followed up with to rull out Meckels diverticulum. And the sad and painful, and frustrating thing is I know what tests need to be ordered but no doctor will see me as they are not a specialist and my primary doctor cant get off her a-- to fax to god d---- referrals to the specialits and thinks Im a drug addict-exactly why I want to major in what I do. Pseudo-addiction is more of an epidemic than addiction and doctors are clueless. I have stopped taking almost all medications now as they are just useless and most cause constipation anyway...My best friend now thinks Im psychotic because I wont take this one medication...that I took twice for extreme panick attacks....that I insisted I was put on myself...Haldol. He does not get that this is not psychiatric and it hurts so bad to be labeled as a psych case when Im in so much pain. But no one knows because they having seen me. I moved a year ago for anorexia/bulimia treatment and gained 70 lbs and have done poorly since. Great with my recovery though. They just cant get past my history...Sorry this is so long, but I'm sur you each have a stroy to tell.
Hi Sara I am glad you are calmed now.
I hope you stay with us, as your experiences in life will come in handy to help others. Perhaps that is why you came to us who knows.
Your family sounds like mine lol, we have auto immune problems. My sister virtually told me to get a grip a few years back in a nice way, and when I said I wanted to do some genetic research on our father and his father, she told me not to waste my time as there was no such thing really as a family predisposed to something like i.e. auto immune, it was just in our minds.
3 months ago she was diagnosed with AUTOIMMUNE THYROIDITIS and should I say well put that in your pipe and smoke it lol.........
Anyway I hope you have a great xmas and enjoy doing your cards. Hope to catch you later. You know you can chat to me anytime if you feel a bit down ok.
Mariax
I hope you stay with us, as your experiences in life will come in handy to help others. Perhaps that is why you came to us who knows.
Your family sounds like mine lol, we have auto immune problems. My sister virtually told me to get a grip a few years back in a nice way, and when I said I wanted to do some genetic research on our father and his father, she told me not to waste my time as there was no such thing really as a family predisposed to something like i.e. auto immune, it was just in our minds.
3 months ago she was diagnosed with AUTOIMMUNE THYROIDITIS and should I say well put that in your pipe and smoke it lol.........
Anyway I hope you have a great xmas and enjoy doing your cards. Hope to catch you later. You know you can chat to me anytime if you feel a bit down ok.
Mariax
Thank you Maria, I take what you said to heart. I have slowed wayyy down now, I finally submitted my overdue application for disability today, despite my mom's initial protests. i think she just doesn't want me to end up like her. She retired on disability at 30 something for lupus.
So my days now consist of waiting, and listening to and taking care of my body. School application sent, don't have to think about it again until May. Disability and SSI application down. I finally get to do Christmas cards this year which is my biggest worry. I try and keep stress to a minimum and loving people surrounding me.
I decided I'm going to look for a new Primary MD. I got an e-mail from my aunt, her story is eerily like mine. She still does not have a diagnosis, which I fear the most. She calls it "The Bowman Syndrome," our maiden name, as it runs in every member of the family to some aspect. I wish someone had forewarned me!
Anyway, I feel stable enough to patiently wait and do my best to continue settling myself here. Again, what you say I trully take with gratidtude and see as coming from a person with experience, strength, hope, and wisdom.
Sara
So my days now consist of waiting, and listening to and taking care of my body. School application sent, don't have to think about it again until May. Disability and SSI application down. I finally get to do Christmas cards this year which is my biggest worry. I try and keep stress to a minimum and loving people surrounding me.
I decided I'm going to look for a new Primary MD. I got an e-mail from my aunt, her story is eerily like mine. She still does not have a diagnosis, which I fear the most. She calls it "The Bowman Syndrome," our maiden name, as it runs in every member of the family to some aspect. I wish someone had forewarned me!
Anyway, I feel stable enough to patiently wait and do my best to continue settling myself here. Again, what you say I trully take with gratidtude and see as coming from a person with experience, strength, hope, and wisdom.
Sara
Hi there, and WOW, I read your timeline and cried I have to say. I just wanted to give you a huge cuddle.
May I first say how much I admire you for your determination to get over so many things in your life and still stay focused on your career you are AMAZING. Many people would have just gave up. And congratulations on being clean and sober now for over 4 years that in itself is an amazing achievement.
Now looking at what you wrote. I would say 85% of the above is due to your recent problems i.e., drug addiction, anorexia, herpes, gall bladder..........
Several things.....
1. Meckel's diverticulum., This would explain a lot of your GI symptoms including the block edge and constipation with intermittent diarrhea.
2. cervical kyphosis can be genetic perhaps linked with your ankle problems as a child. CK from what I have read can cause CNS problems, i.e. bladder incontinence, tremors, pain and fatigue.
3. Herpes can be very severe and cause much of what you experienced including fevers.....
I hasten to add I am not a doctor and could be talking rubbish here, but I just wanted to take a few things out of the equation as there is so much stuff in there muddying the waters.
I am ignoring everything now until this :
a. Raynaurds
b. Hot and dry feet
c. Red and sweaty palms
d. Joint pains
e. Fatique
f. Positive ANA even a few years back.
I would go in concentrating on the above the join pains are really what are bothering you right now and this needs to be resolved. The pain can be a nightmare and you need to find a way for this rheumatologist to LISTEN to you. I certainly would not try to diagnose you with anything as you have been through so much in your short life and like I said some of it will be from your life experiences and some of it could be triggered by your life experiences.
I think you do push yourself far too much. I mean you have all this stuff going on and you have applied for a Master's program in palliative, or Hospice/pain management type of care.
I mean you have herpes you are very sick and you go to the gym to for healthy balanced exercise and you are on antibiotics and anti virals and all this pushing I would think just made you worse........body out of balance more like lol and that would explain the vomiting, not enough electrolytes.......or replacing them after a lot of exercise.
IF you were my daughter I would say to you, SLOW down. You are only young you need to get yourself well right now. 4 years clean and sober is not long and you dont want to be putting yourself into such a stressful situation that this could trigger a relapse.
Its almost as if you are testing your resolve to yourself. Like laughing in the face of diversity if that makes sense. It can also be an opening for an excuse to relapse if you failed you can then say well I did try but it was all too much for me.
I found your statement..............I don't want my mom to tell me I'm a big girl and can handfle this by myself because I can't.
Do you feel your mum has pushed you a bit?
I dont think you can handle this yourself that is why we are here isnt it, because you do need support. I think you need to sit your mum down and have a proper long talk about things. Something happened when you were very young to trigger all your problems off in the first place. They are still not resolved. IF you would like to chat off forum I am always here and I listen impartially.
So for me I would put this bit of your career on the back burner for now and really get well first. You have loads of time. I was 47 when I went to college and took my teacher training certificate and passed and taught until 4 years ago to adults training in I.T. and cookery.
In my opinion it is really the wrong time for you to be furthering your career
Let me try to explain.
It would be like me enrolling in a 2 year course for councelling in my present state of poor health. I would fail and would be setting myself up for failure which would make my illness worse as I have put myself under unnecessary stress.
So take a deep deep breath and relax.
Go for you appointment, but just with the few things that are bothering you now.
Have some time with your mum and really talk to her.
Enjoy your Christmas.
Then start in the new year just give yourself a break.
I cant say much more right now like I said I am no expert and would never think of telling anyone what they have but I am happy to look and maybe see the wood through the trees so it gives you more of a chance to get a diagnosis and be treated with a bit more respect that you deserve especially after all the things you have managed to achieve in your life.
Big hugs. Maria.xx
IF I was you I would go into the
May I first say how much I admire you for your determination to get over so many things in your life and still stay focused on your career you are AMAZING. Many people would have just gave up. And congratulations on being clean and sober now for over 4 years that in itself is an amazing achievement.
Now looking at what you wrote. I would say 85% of the above is due to your recent problems i.e., drug addiction, anorexia, herpes, gall bladder..........
Several things.....
1. Meckel's diverticulum., This would explain a lot of your GI symptoms including the block edge and constipation with intermittent diarrhea.
2. cervical kyphosis can be genetic perhaps linked with your ankle problems as a child. CK from what I have read can cause CNS problems, i.e. bladder incontinence, tremors, pain and fatigue.
3. Herpes can be very severe and cause much of what you experienced including fevers.....
I hasten to add I am not a doctor and could be talking rubbish here, but I just wanted to take a few things out of the equation as there is so much stuff in there muddying the waters.
I am ignoring everything now until this :
a. Raynaurds
b. Hot and dry feet
c. Red and sweaty palms
d. Joint pains
e. Fatique
f. Positive ANA even a few years back.
I would go in concentrating on the above the join pains are really what are bothering you right now and this needs to be resolved. The pain can be a nightmare and you need to find a way for this rheumatologist to LISTEN to you. I certainly would not try to diagnose you with anything as you have been through so much in your short life and like I said some of it will be from your life experiences and some of it could be triggered by your life experiences.
I think you do push yourself far too much. I mean you have all this stuff going on and you have applied for a Master's program in palliative, or Hospice/pain management type of care.
I mean you have herpes you are very sick and you go to the gym to for healthy balanced exercise and you are on antibiotics and anti virals and all this pushing I would think just made you worse........body out of balance more like lol and that would explain the vomiting, not enough electrolytes.......or replacing them after a lot of exercise.
IF you were my daughter I would say to you, SLOW down. You are only young you need to get yourself well right now. 4 years clean and sober is not long and you dont want to be putting yourself into such a stressful situation that this could trigger a relapse.
Its almost as if you are testing your resolve to yourself. Like laughing in the face of diversity if that makes sense. It can also be an opening for an excuse to relapse if you failed you can then say well I did try but it was all too much for me.
I found your statement..............I don't want my mom to tell me I'm a big girl and can handfle this by myself because I can't.
Do you feel your mum has pushed you a bit?
I dont think you can handle this yourself that is why we are here isnt it, because you do need support. I think you need to sit your mum down and have a proper long talk about things. Something happened when you were very young to trigger all your problems off in the first place. They are still not resolved. IF you would like to chat off forum I am always here and I listen impartially.
So for me I would put this bit of your career on the back burner for now and really get well first. You have loads of time. I was 47 when I went to college and took my teacher training certificate and passed and taught until 4 years ago to adults training in I.T. and cookery.
In my opinion it is really the wrong time for you to be furthering your career
Let me try to explain.
It would be like me enrolling in a 2 year course for councelling in my present state of poor health. I would fail and would be setting myself up for failure which would make my illness worse as I have put myself under unnecessary stress.
So take a deep deep breath and relax.
Go for you appointment, but just with the few things that are bothering you now.
Have some time with your mum and really talk to her.
Enjoy your Christmas.
Then start in the new year just give yourself a break.
I cant say much more right now like I said I am no expert and would never think of telling anyone what they have but I am happy to look and maybe see the wood through the trees so it gives you more of a chance to get a diagnosis and be treated with a bit more respect that you deserve especially after all the things you have managed to achieve in your life.
Big hugs. Maria.xx
IF I was you I would go into the
Timeline
6yrs- ankle surgery for pronate ankles (turned inward)
8yrs old- head injury, mild concussion, stitches. Diagnosed with Migraines.
11yrs- had to sit out of PE as I had lower back pain-had a doctors note-was told my backpack was too heavy.
12yrs- Diagnosed anorexia, inout of for 10 years rangeing in 60 lbs.
14yrs- Diagnosed with nearsightedness. Or is it farsighted...Ican't see far away darnit!
Began having trouble with my ankles again, hairline fracture to one.
16yrs- checked myself into rehab for 6 months of meth addiction. Began NA. Started seeing floaters in vision, decreasing acuity continues.
17 yrs- cholestesectomy-gallbladder removed for gallstones
19yrs- Colonoscopy, endoscopy, many other scans for painless but profuse rectal bleeding while running. Saw a urologist for urinary incontinence while running. Constipation issues began. severe pain attacks in lower right quadrant, unknown in origin. Just read over medical records and the one test I did not have done could have diagnosed Meckel's diverticulum, which apparently one specialist thought I had but no one followed through. Joint pain and fatigue began. Rheumotologist sought, positive ANA first seen, unknown cause. Stress increased in school, boyfriend drama. One month of bulimia then relapsed on drugs for 4-5 months. Then got cleansober again.
20-22: in/out anorexia and bulimia while trying to finish nursing school. Went inpatient for the first time. Clonus-pre-seizure movement in foot- developed along with tremors. Injured low back while lifting a patient. All tests negative, went through PT, however all massage therapists, and myself, can feel the injury in my back.
April 22 years; sebacceous gland above right eye infected with MRSA, hospitalized for one week as they said it wouldn't go away and I contracted it because I was so immunocomprimised from the anorexia.
June 22 years old- diagnosed with heart damage and osteopenia r/t anorexia nervosa
July 6 2010, 22 yrs-Hospitalized for almost one year for anorexia. I always said I was scarred to gain weight because I knew my joint pain would return. While in treatment extreme muscle/joint pain, exhaustion, migraines. Horrible constipation, close call bowel obstructions.
23yrs/present May: Had sex, sorry, got recurrent tonsilitis, and yikes! herpes. Would not go away! So tired. Multiple antibiotics and antivirals. Exhaustion. Was going to gym every day for healthy, balanced exercise, then one day stopped and haven't been back since. The day everything changed i call it. I could call my gym and find out exactly what day. Nausea/vomitting that persisted. Consipation. Fevers. Sleeping all day. Negative for mono.
July-got a job, started working, still exhausted. Symtpoms continued. Low back pain kicked up again. Migraines with N/V, ER a few times. GI symtoms and N/V got so bad, went to patients houses throwing up in a plastic bag in the car because there was no one to supstitute and I needed the money
Oct 5-Quick job (Hospice agency that didn't palliate their patients, I had to do the right thing...) Symptoms were extreme at this point and progressed.
Oct: Migraines with N/V
Early Nov: Hospitalized for bowel obstruction, still have to use enemas regularly to go.
Mid Nov: MRSA came back in the sebacceous gland above the eye...randomly.
Last friday, 11/26/10 went to chiroprator for innocent neck pain I thought, now its extreme neck pain. Xrays show cervical kyphosis, but only xrays of my cervical vertebra were ordered. Neuro symtoms such as tremors and clonus continue and have been for months but only worsened.
I've just realized I've had other symtpoms, such as raynauds, really hot and dry feet at night- my mom would always have to put lotion on them, and red/sweaty palms for some time but not sure when. As soon as I got to SD in March my nose began to bleed dry blood.
Currently I'm just exhausted and the joint pain is so severe, mainly in my knees. My neck is a constant and relentless pain that I'm used to being there and my low back pain comes/goes. Constipation with intermittent diarrhea now is my GI symptoms. I still have the tremors and clonus at times. I get hot flashes and then periods were I just can't get warm enough.
Emotionally/spiritually I',m doing better than I ever have, I just don't want to be referred to a chronic pain clinic because I'd rather be treated and cured, or managed with other means, as I am in a 12 step program today, have 4 years clean/sober, and would hate to be on pain pills forever. Plus the worsen the constipation. I just want the pain and exhaustion to go away so I can go on with my life and do the things I want to do, like help people.
I applied for a Master's program in palliative, or Hospice/pain management type of care to get my Nurse Practitioners but fear i won't be able to do it. I love my job as a nurse and just want to work again. I just want my family, my mom, and my old best friend to believe me and not tell me to take my psych meds. I don't want my mom to tell me I'm a big girl and can handfle this by myself because I can't.
Again, I'm so glad I found this site, thank you all so very much :)
6yrs- ankle surgery for pronate ankles (turned inward)
8yrs old- head injury, mild concussion, stitches. Diagnosed with Migraines.
11yrs- had to sit out of PE as I had lower back pain-had a doctors note-was told my backpack was too heavy.
12yrs- Diagnosed anorexia, inout of for 10 years rangeing in 60 lbs.
14yrs- Diagnosed with nearsightedness. Or is it farsighted...Ican't see far away darnit!
Began having trouble with my ankles again, hairline fracture to one.
16yrs- checked myself into rehab for 6 months of meth addiction. Began NA. Started seeing floaters in vision, decreasing acuity continues.
17 yrs- cholestesectomy-gallbladder removed for gallstones
19yrs- Colonoscopy, endoscopy, many other scans for painless but profuse rectal bleeding while running. Saw a urologist for urinary incontinence while running. Constipation issues began. severe pain attacks in lower right quadrant, unknown in origin. Just read over medical records and the one test I did not have done could have diagnosed Meckel's diverticulum, which apparently one specialist thought I had but no one followed through. Joint pain and fatigue began. Rheumotologist sought, positive ANA first seen, unknown cause. Stress increased in school, boyfriend drama. One month of bulimia then relapsed on drugs for 4-5 months. Then got cleansober again.
20-22: in/out anorexia and bulimia while trying to finish nursing school. Went inpatient for the first time. Clonus-pre-seizure movement in foot- developed along with tremors. Injured low back while lifting a patient. All tests negative, went through PT, however all massage therapists, and myself, can feel the injury in my back.
April 22 years; sebacceous gland above right eye infected with MRSA, hospitalized for one week as they said it wouldn't go away and I contracted it because I was so immunocomprimised from the anorexia.
June 22 years old- diagnosed with heart damage and osteopenia r/t anorexia nervosa
July 6 2010, 22 yrs-Hospitalized for almost one year for anorexia. I always said I was scarred to gain weight because I knew my joint pain would return. While in treatment extreme muscle/joint pain, exhaustion, migraines. Horrible constipation, close call bowel obstructions.
23yrs/present May: Had sex, sorry, got recurrent tonsilitis, and yikes! herpes. Would not go away! So tired. Multiple antibiotics and antivirals. Exhaustion. Was going to gym every day for healthy, balanced exercise, then one day stopped and haven't been back since. The day everything changed i call it. I could call my gym and find out exactly what day. Nausea/vomitting that persisted. Consipation. Fevers. Sleeping all day. Negative for mono.
July-got a job, started working, still exhausted. Symtpoms continued. Low back pain kicked up again. Migraines with N/V, ER a few times. GI symtoms and N/V got so bad, went to patients houses throwing up in a plastic bag in the car because there was no one to supstitute and I needed the money
Oct 5-Quick job (Hospice agency that didn't palliate their patients, I had to do the right thing...) Symptoms were extreme at this point and progressed.
Oct: Migraines with N/V
Early Nov: Hospitalized for bowel obstruction, still have to use enemas regularly to go.
Mid Nov: MRSA came back in the sebacceous gland above the eye...randomly.
Last friday, 11/26/10 went to chiroprator for innocent neck pain I thought, now its extreme neck pain. Xrays show cervical kyphosis, but only xrays of my cervical vertebra were ordered. Neuro symtoms such as tremors and clonus continue and have been for months but only worsened.
I've just realized I've had other symtpoms, such as raynauds, really hot and dry feet at night- my mom would always have to put lotion on them, and red/sweaty palms for some time but not sure when. As soon as I got to SD in March my nose began to bleed dry blood.
Currently I'm just exhausted and the joint pain is so severe, mainly in my knees. My neck is a constant and relentless pain that I'm used to being there and my low back pain comes/goes. Constipation with intermittent diarrhea now is my GI symptoms. I still have the tremors and clonus at times. I get hot flashes and then periods were I just can't get warm enough.
Emotionally/spiritually I',m doing better than I ever have, I just don't want to be referred to a chronic pain clinic because I'd rather be treated and cured, or managed with other means, as I am in a 12 step program today, have 4 years clean/sober, and would hate to be on pain pills forever. Plus the worsen the constipation. I just want the pain and exhaustion to go away so I can go on with my life and do the things I want to do, like help people.
I applied for a Master's program in palliative, or Hospice/pain management type of care to get my Nurse Practitioners but fear i won't be able to do it. I love my job as a nurse and just want to work again. I just want my family, my mom, and my old best friend to believe me and not tell me to take my psych meds. I don't want my mom to tell me I'm a big girl and can handfle this by myself because I can't.
Again, I'm so glad I found this site, thank you all so very much :)
You are so right about using big words. I've tried to play dumb hen going into a new doctor or for an ER visit, as opposed to pulling the RN card, but the doctors also seem to catch on. Something I say always gives myself away, which makes them think I'm even more of a psych case because I was smart enough to come up with a plan to try and fool them!
The timeline sounds like a good idea and I could use it for my upcoming appointment with a new rheumatologist in the area on the 15th, and also for my disability application, my SSI appointment is tomorrow, so I'll get working on it tonight and get back to you guys! Thanks Maria!
Sara
The timeline sounds like a good idea and I could use it for my upcoming appointment with a new rheumatologist in the area on the 15th, and also for my disability application, my SSI appointment is tomorrow, so I'll get working on it tonight and get back to you guys! Thanks Maria!
Sara
Hi you sound more calmer in your post phew I was worried about you. I am a bit of a worry wart when it comes to the young who are ill I have grand children and step kids your age.
Look the thing is with the medical profession they hate being told what is wrong with someone. You would think wouldnt you that your help would be welcomed but sadly it just screams hypochondria or Somitization disorder.....to THEM. That is why when I talk to my doctor I never use big words lol because I am scared to death she will just say I have been googling lol and sometimes even I am put off a bit when I read posts full of medical words lol as it means I have to google them too to understand what is wrong lol. Not your post but I have seen some which would scare me to death lol.
Look would you do me a huge favour. Write down your symptoms from the worse downwards if you can section them so that they are ie. SENSORY, GI, AND so on. When the first symptom started. Well a timeline. If you look Jibjen did this for us recently and it is so useful as it gives us an idea of what is going on. Would you mind?
We might be able together give you some form of attack procedure for when you see your doctor next.
I would really like to help you better but I need more information but in more order.
Yes Lupus is one of the hardest things to diagnose.
Did you know for example that certain medication and drugs can start Lupus?
If you have family members with Lupus or auto immune you are more likely to have an auto immune problem.
My father it took years to get diagnosed and he constantly had negative ANA, until he finally got 2 which were positive 6 months apart.
The problem with our bodies is we can harm it unintentionally but it can take years to recover. For example smoking. My ex husband finally stopped smoking but after 7 years he was still suffering with lung problems and died of lung cancer which he didnt have when he stopped. The damage is done the cells remember the damage you can kid some things but not your body lol it knows you know.....
I had my gallbladder removed when I wasnt much older then you, and still cant eat certain things so thats like years ago.
Try to relax you are obviously an extremely intelligent young lady wow I mean really clever and you need to just find a way to attack this problem without it doing further harm to you.
So if you would like to write down your timeline it might I SAY MIGHT help us to at least see what is going on with you. Then perhaps we can help you move forward a little less anxiously.
Big hugs. xxx Maria
Look the thing is with the medical profession they hate being told what is wrong with someone. You would think wouldnt you that your help would be welcomed but sadly it just screams hypochondria or Somitization disorder.....to THEM. That is why when I talk to my doctor I never use big words lol because I am scared to death she will just say I have been googling lol and sometimes even I am put off a bit when I read posts full of medical words lol as it means I have to google them too to understand what is wrong lol. Not your post but I have seen some which would scare me to death lol.
Look would you do me a huge favour. Write down your symptoms from the worse downwards if you can section them so that they are ie. SENSORY, GI, AND so on. When the first symptom started. Well a timeline. If you look Jibjen did this for us recently and it is so useful as it gives us an idea of what is going on. Would you mind?
We might be able together give you some form of attack procedure for when you see your doctor next.
I would really like to help you better but I need more information but in more order.
Yes Lupus is one of the hardest things to diagnose.
Did you know for example that certain medication and drugs can start Lupus?
If you have family members with Lupus or auto immune you are more likely to have an auto immune problem.
My father it took years to get diagnosed and he constantly had negative ANA, until he finally got 2 which were positive 6 months apart.
The problem with our bodies is we can harm it unintentionally but it can take years to recover. For example smoking. My ex husband finally stopped smoking but after 7 years he was still suffering with lung problems and died of lung cancer which he didnt have when he stopped. The damage is done the cells remember the damage you can kid some things but not your body lol it knows you know.....
I had my gallbladder removed when I wasnt much older then you, and still cant eat certain things so thats like years ago.
Try to relax you are obviously an extremely intelligent young lady wow I mean really clever and you need to just find a way to attack this problem without it doing further harm to you.
So if you would like to write down your timeline it might I SAY MIGHT help us to at least see what is going on with you. Then perhaps we can help you move forward a little less anxiously.
Big hugs. xxx Maria
Thank you both so much for your posts and for your warm welsomes, and yes, Mrs. Aristotle, that was helpful!
I realize I have been digging deep into my symtpoms a) for my love of medicine and b) I figured if I went to my doctor with a list windled down to 3 possible diagnosis and tests as opposed to sysmptoms, which I have been doing, she would do something. Either way I just want her to fax a referral over to a specialist as I realize things are far beyond my knowledged.
And stress of course does worsen my symptoms. Today, I woke up in less pain, and I was so grateful I was able to go out of the house, get groceries, get some christmas presents, and finally get a phone that works so I have contact with the outside world! And as I'm typing, the pain and exhaustion symtpoms are manageable.
I realize too the GI symtpoms may be a delayed reaction to my anorexia, but the thing is this all began a long time ago, I had my colonoscopy 4 years ago. About 3 months ago I was finally regiular, which was the wierd thing, then something triggered it.
I didnt know you could have a positive, then hegative ANA, that must make diagnosis even more frustrating. I wish the best for you both.
I realize I have been digging deep into my symtpoms a) for my love of medicine and b) I figured if I went to my doctor with a list windled down to 3 possible diagnosis and tests as opposed to sysmptoms, which I have been doing, she would do something. Either way I just want her to fax a referral over to a specialist as I realize things are far beyond my knowledged.
And stress of course does worsen my symptoms. Today, I woke up in less pain, and I was so grateful I was able to go out of the house, get groceries, get some christmas presents, and finally get a phone that works so I have contact with the outside world! And as I'm typing, the pain and exhaustion symtpoms are manageable.
I realize too the GI symtpoms may be a delayed reaction to my anorexia, but the thing is this all began a long time ago, I had my colonoscopy 4 years ago. About 3 months ago I was finally regiular, which was the wierd thing, then something triggered it.
I didnt know you could have a positive, then hegative ANA, that must make diagnosis even more frustrating. I wish the best for you both.
Hi and welcome.
I cant understand why you dismiss Lupus and trade for MS?
If you have had positive ANA it is more likely going to be that or something similar.
I had a positive ANA then a negative one. I am still waiting to be diagnosed after 4 years with something either MS or Lupus or similar.
The trouble is with your past history of eating disorders you could have done any amount of damage to your intestinal tracts and could be paying a price now sadly.
I hate to say this but knowledge can be a bad thing lol.
Dont be fixated on MS it doesnt honestly sound like MS I have read one of your posts and it really does sound more like a lupus type disease. You dont usually sweat or have red palms in MS but you certainly do in Lupus.
I do feel for you, its a nightmare being ill then getting labelled as being physchotic.
You need to really concentrate on the really bad things you are experiencing as otherwise you will get lost in all the little bits and pieces.
Just write down the main issues.
I have had some awful symptoms over the 4 years and I am still here.
I think you are so anxious you could be making the illness worse. I speak as I find, I know that outer stress is the worse thing for lupus or MS or even M.E. and can put you in bed for months.
You need to get people on your side right now and perhaps a break away from it all will allow you to rest and think about your next course of action. You need your family on side.
Sorry not being very helpful and I am no expert what do I know I cant even sort myself out, but my gut feeling doesnt think MS for you, but something other connective tissue disorder which can cover all your symptoms.
Such a young person to have all these worries here is a big hug from me. Mariax
I cant understand why you dismiss Lupus and trade for MS?
If you have had positive ANA it is more likely going to be that or something similar.
I had a positive ANA then a negative one. I am still waiting to be diagnosed after 4 years with something either MS or Lupus or similar.
The trouble is with your past history of eating disorders you could have done any amount of damage to your intestinal tracts and could be paying a price now sadly.
I hate to say this but knowledge can be a bad thing lol.
Dont be fixated on MS it doesnt honestly sound like MS I have read one of your posts and it really does sound more like a lupus type disease. You dont usually sweat or have red palms in MS but you certainly do in Lupus.
I do feel for you, its a nightmare being ill then getting labelled as being physchotic.
You need to really concentrate on the really bad things you are experiencing as otherwise you will get lost in all the little bits and pieces.
Just write down the main issues.
I have had some awful symptoms over the 4 years and I am still here.
I think you are so anxious you could be making the illness worse. I speak as I find, I know that outer stress is the worse thing for lupus or MS or even M.E. and can put you in bed for months.
You need to get people on your side right now and perhaps a break away from it all will allow you to rest and think about your next course of action. You need your family on side.
Sorry not being very helpful and I am no expert what do I know I cant even sort myself out, but my gut feeling doesnt think MS for you, but something other connective tissue disorder which can cover all your symptoms.
Such a young person to have all these worries here is a big hug from me. Mariax
dear Sladylani,
welcome to limboland. i am sorry you are going through so much and found your way here, but i'm glad you feel like you're in the right place.
(just a favor to ask--if you could break up your posts into paragraphs next time, that would be super helpful. the typeface in this forum is pretty small and some folks have vision problems, so we'll all be able to read your story and hopefully provide you with the support you seek a little more readily if you create some space between your paragraphs. thanks!)
we all know that doctors can make mistakes and with your nursing background, you are in a position to follow up on their actions, i'm sure.
have you contacted your local MS society at all? from what i have understood, there are resources there that can help you obtain an MRI. also, there is an MS forum here on medhelp that has some very wise people on it who may be able to give you some guidance as to how to seek proper care with your limited resources. if you haven't yet visited those folks, please go to:
http://www.medhelp.org/forums/Multiple-Sclerosis/show/41?camp=msc&personal_page_id=874974
blessings to you and welcome, once again.
binx
welcome to limboland. i am sorry you are going through so much and found your way here, but i'm glad you feel like you're in the right place.
(just a favor to ask--if you could break up your posts into paragraphs next time, that would be super helpful. the typeface in this forum is pretty small and some folks have vision problems, so we'll all be able to read your story and hopefully provide you with the support you seek a little more readily if you create some space between your paragraphs. thanks!)
we all know that doctors can make mistakes and with your nursing background, you are in a position to follow up on their actions, i'm sure.
have you contacted your local MS society at all? from what i have understood, there are resources there that can help you obtain an MRI. also, there is an MS forum here on medhelp that has some very wise people on it who may be able to give you some guidance as to how to seek proper care with your limited resources. if you haven't yet visited those folks, please go to:
http://www.medhelp.org/forums/Multiple-Sclerosis/show/41?camp=msc&personal_page_id=874974
blessings to you and welcome, once again.
binx
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