Wrong diagnosis? Need MD help....

[SLadylani]

Hi, I am a 23 year old RN. No I don't have a psych illness and I'm only trying to diagnose myself because I'm so desperate. I have a low-income insurance that allows me to see a horrible primary doctor only once monthly and require referrals to see specialists, but she cannot seem to find the time to fax the referrals. I was recently hospitalized for a bowel obstruction at 23 y/o. i have had this problem for years, a GI history like no other, with no diagnosis. Also, on/off urinary incontinence and rectal bleeding when i used to be able to run, n/v, chronic periorbital headaches, chronic joint pain, neck/back pain, severe, paresthesias in my extremities, sweaty red palms, swollen lymph nodes in armpits and groin, recently diagnosised with MRSA again, under my skin-no lesion found-they said they thought it was in a gland...oh, im bedbound now. complete exhaustion. my mother and best friend think i am crazy as they have not seen me, i moved 6 months ago when this all started-i got a case of tonsilitis-my first case-that would not go away and just never recooperated. im a rrecovery anorexix/bulimic, previously all my problems were blamed on that and everyone promised i would feel better if i gained weight, but i knew i would feel worse, and i do. horrible sweating, night sweats, hot flashes. i can no longer leave the house and my phone died. i went the the ER yesterday and begged for help but the doctor said to wait to see my primary. I have a positive ANA-autoimmune test. H/O lupus in family... grandmother died at 50 from pneumonia?! I was thinking Multiple sclerosis with myleopathy in the cervical area, as i have an inverted c-spine. but i find it odd that my friend from my eating disorder treatment, with my same story, just died from lymphoma. i dont know what to do. if someone can give me a diagnosis, at least i can tell my family/friend so they beleive im not psychotic. I am just an RN they say, the doctors know best...of i have had a clonus since i was bulimic-they told me it would go away. but it hasnt. currently i give myself enemas every 3 days, i urinate once daily, i sweat constantly or am freezing, tremors, twithing, my right leg fell asleep for a long time for no reason, severe neck paion speading down my arms and shoulder blades-i sleep on the floor if at all, severe low back pain severee knee pain-my joints feel frozen-icy hot all over my body is the only thing that works anymore...I swear I HAVE TRIED EVERYTHING, please can someone help? I will do my best to help you in return, as I do know a lot about medicine, i love medicine, was a hospice nurse, and dream of going to NP school

[supermum_ms]

I am surprised and shocked that an RN would imply there is nothing abnormal about habitual enemas, yes 2 bowel movements a week is normal but giving your self 2 enemas a week is NOT! Basic readily available information........

"Are habitual use of enemas to treat constipation harmless?

No!

Habitual use of enemas is not harmless. Over time, enemas can impair the natural muscle action of the intestines, leaving them unable to function normally. An ongoing need for enemas is not normal; you should see a doctor if you find yourself relying on them or any other medication to have a bowel movement."

Your all of 23, have experienced numerous serious medical situations and life long dx's, some life threatening and you have a co-morbid mental health condition on top of which you have a history of self harm, how you managed to finish school is a miracle, let alone nursing school, so give your self some credit. As you are taught, you are counselled about not getting too close to a patient, being too emotionally invested is not good ever, you are being your patient and are too emotionally involved to see everything clearly and with out prejudice.

To be totally blunt, you do not have enough life experience and in field work experience, to have gained enough medical knowledge to dx or treat but you would know that no matter how many years your an RN you are never qualified to dx or treat. You should already know that working in the field of medicine is a life long learning experience, what you know would fit on a pin, compared to what is known and then there is still even more that is yet unknown. That is not a dig at you, but truth of anyone, you do need to be honest with your self about everything, including cause and effect.

Your psychiatrist should be an ally in getting aditional tests to prove, along with your documented dx conditions and testings that prove them, that would all help you be taken seriously! Your psychiatric issues are not just the anorexia/bulimia and drug and alcohol abuse but the most important are the "obvious BPD, bipolar recently became apparent" that you said in the Borderline personality disorder forum, neither are recoverable but are life long conditions that can be managed. You can't isolate your mind from the rest of you, seriously is your mind not the driving force of you, what affects your mind affects all of you, your spirit, your sexuality, your ability to feel, to love etc etc the mind is not isolated it is all encombasing.

I am in no way trying to be disrespectful to you and I totally understand you wanting support and empathy because we all want that but i'm not sure what you mean by encouragement. I think everyone would be encouraging you to be healthy and to stay focused on your recovery but i suspect you may not ever truely hear/see/feel that because what you seem to be ultimately looking for is a yes man, and if they can't give you that, all the advice and support you get simply falls on deaf ears because without totally agreement, you dont feel anyone really believes in you or understands.

I base that observation because you've overlooked all the important logical questions, support and empathy given by all, which you've totally missed and you've replied with a justification of something unhealthy, followed by a misinterpretation of advise to narrow down your sx to 3 main ones (NOT focus on 3 specialists, 3 referals, 3 possible dx or 3 appropriate tests) and then ended with the lack of being believed or supported. I am trying to get you to see that there is some truth in the posibility of your psychiatric issues playing a role in your overall picture, i am not saying you dont have medical issues out side your mental health conditon because Lupus alone as i've said before is not nothing!

I would be just as honest, if you were my daughter or my mother so please take this in the spirit it is being given. You may be upset that someone else is mentioning your mental health condition, but hon that is a big part of your life. I know you dont want that to be the problem (i'm not saying it is the only problem) but from an out sider reading what you say, it is playing its part because your clearly saying that your health is making you isolated, depressed and anxious, put your RN hat on and see how this is not ideal for anyone. You may not be the best person to make the assumption that mentally your doing fine, when clearly from what you say, your mental health is taking a battering, there is no shame in that, totally understandable for anyone dealing with chronic health issues.

So forget your history of mental health issues for a moment and recognise that feeling the way you do is understandable and well documented in all the research on chronic health, so be brave, be proactive and go and speak to your psychiatrist about what your feeling, thinking and all of it, follow that advice for a time. If not you'll never know if by just dealing with that one aspect if it will make the journey towards finding answers so much easier than it is right now.

I hope you take on board all the advice and support you've been given and realise that getting the all clear on your mental health, would actually be the smartest thing you could do. You need that field of medical help behind you, you need the proof with your history or there will be no getting around that, so be wise and put your RN hat on and give your patient the necessary advice. Ahhh in case you've forgotten in this epic novel i've written (dont worry i wont write you again) the patient is YOU!

Take care.........JJ

[SLadylani]

I don't know how to respond to so many. Hmm. Well, firstEvery threee days for enemas=2 times per week. I don't do laxatives anymore as they dont work and my system will become more dependent. Amitiza and DSS and aloe extract herbal pills are all I take. As a RN I know we start a bowel program in our patient after 3 days to produce a bowel movement, so thats what i do as when I'm constipated that just tends to add to my pain. 2 BMs a week isx normal. And its not a stimulant laxative. Also as far as symtoms go, I figured my PCP knows that Im an RN, and I only have 5 minutes or so with her an appointment, so if I narrowed it down to 3 specialists/3 referrals or 3 possible diagnosis, that might work, which I think I have. I have 3 appropriate tests that I just need someone to believe me enough to order. And as far as the insurance, I can't go to the grocery store right now, let alone work, so I defineitly can't get good insurance and have previous disability insurance from Lupus, which I have been diagnosed with, but to which my symptoms do not completely match with at this point,. When I did have better insurance in my youth, in Santa Barbara, I saw a few specialists, which is when I was diagnosed with a few different things. But I moved and went to treatment, so no one followed up after treatment. My symtoms have changed. Lastly, as far as the psych issues go, as I say with both my eating disorder/ED and drug/alcohol recovery, I am in recovery, i.e. my symtoms are being treated and are under control. I see a shrink and take my meds, and it has not been an issue. I'm tired of always being labeled a psych case. I'm tired of everything having to do my my psych illness. Its a part of me yes, but a part of me mentally. Theres also a spiritual, emotional, physical, and sexual side. Seperate. I don't want to be labeled, and I know how peopple can  be judgemental now a days, which is why I try to say the things I do. I just want someone to belive me. Cause its starting to hurt when people dont. Somethimes I just want support or empathy or encouragement, or most of all a friend, as I dont go outside really, so thats limited. Thank you guys for your posts,

[summerluvr]

Good point,  Narrowing down to the top 3-5 symptoms helps doctors focus

Re Enemas:  Every three days?!  Didn't see this part.  This is not healthy behaviour.  Some people only have bowel movements a few times a week and this is "normal"!  When I had serious constipation issues from my chemo, the hospital didn't even recomend enemas, just stool softeners and progress strength laxatives.  After wards they recomended fluids, fibre and stool softeners as a daily thing.  Only once did I get very impacted and almost ended up in the ER from it.

[RedFlame]

I have read through several of your posts to try to understand.  You have 35 serious symptoms that you refer to.  As you know as an RN, those symptoms come from many different systems in the body, a fact that will make diagnosis quite difficult.  Honestly, most doctors are not going to be able to help you until your symptoms make more sense.  I have no doubt that you feel horrible, and that your pain feels unimagineable or as you have said "end of life" pain.  

Since as an RN you know that Anorexia kills, it also causes major damage to your brain, GI tract, heart and many other organs.  As a patient in recovery, you will find a 'diagnosis' faster if you first see a psychiatrist that treats people with Anorexia.  Not becuase I think you are crazy, but becuase he/she will have a grasp of what is from damage and what isn't.  He can then confer with your other doctor to help initiate testing and treatment.  

As an RN, did you meet some physicians that could help point you in the right direction? Or perhaps a nurse that could help?  You mention being home-bound, I think getting some help from Visiting Nurses would be helpful.

You are a very attractive and smart woman.  Is there any possibility that you might change your avatar or profile image.  The only reason I mention that is I think there may be some who won't take you seriously.  Just a suggestion.  Take it or leave it.

Many members here have given you some well-thought out advice, encouragement and suggestions.  As a person with MS, I can tell you it takes so much energy to respond as these ladies have.  Please take their good efforts and suggestions to heart and hear that they are trying to help and that you are welcome here.  

Good Luck!

Red

[MsWobbles]

I'm responding to your comment, "I am just an RN.  They say the doctors know best."  Need to clarify who "they" is in the above statement:  Most likely "they" refers to the doctors themselves saying they know best and trying to discourage you from doing your own research (because the more you know about your condition, the more you'll know that "they" i.e. the doctors, do not necessarily know best).  Two things for sure:  You know your own body's normal state and responses etc. far better than anyone else on the planet and you care the most about your situation because you have the most to lose!  I've seen quite a few laypeople diagnose themselves accurately long before the doctors ever could.

I can empathize with your situation of not being able to get anyone's attention about your worsening symptoms - it is a relatively normal event here in the US.  Though I've seen a lot of it, I just can't shake the shock and dismay I feel every time I see it.

I also feel there is a current widespread suppression of diagnosis of neurologic disease going on in the US based on my own experience and that of others posting online.
We aren't like cancer patients who get diagnosed so fast so the lucrative treatments can begin!

You could look into alternative approaches like homeopathic.  Get and read the book called "Lean On Me" by a woman who was diagnosed with MS before there were any MS disease-modifying medications available. Her name is Nancy Davis and you can get her book cheap on Amazon.com. Her diagnosing doctor just told her  "go to bed - forever."  He said she could probably still operate a remote.  He had her in tears.  Well, she has done way better than her doctor ever predicted, by using other approaches than just modern medicine (although she also uses that too - sparingly).  Now she looks terrific and can do much - still having MS - and not on any approved MS medications.  Get and read her book!!  Your library may also have it.  

I pray your situation will improve!!

Weakandfalling (WAF)

  

Being an RN, you should be able to get good medical insurance, rather than the junk you have now, but you may need to hook up with a good hospital to get it rather than just work in a doctor's office.  There is such a demand for RNs today, you can be choosy and pick the place offering the best insurance!!  

[supermum_ms]

I am sorry that you are in suffering, I truely mean that!

I was going to send you a private message and noticed you had also joined a few other 'serious' forums, boarderline personality disorder, cancer etc. As i was interested in trying to help you, i read the posts you'd posted in these other forums, I had hoped to find some clue that you had not mentioned in this forum.

I dont know if you realise but the information your posting in these different forums, is changing each time and it seems you omit information or add and I have to ask if you have been dx by a doctor for these various conditions or are you self diagnosing? You say in the BPD forum "I have a long history of psych illness, obvious BPD, bipolar recently became apparent" and yet here in the MS forum you state "I don't have a psych illness" having a mental illness is not something you need to hide from, it can happen to anyone!

You also state quite a few other discrepancies, "sysmtoms similar to spinal cord injury (my diagnosis and symptoms range from lymphoma to multiple sclerosis and definitely involve my cervical spine as I have been diagnosed witth fibromyalgia, lupus, cervical kyphosis...."  In your pain management post you say you have "osteopenia and a prior back injury chiroprators wont touch me" and also give a slightly longer list of dx "Current diagnosis are Fibromyalgia, Lupus, Low back injury, Cervical kyphosis, Serioous GI problems/damage, possible diverticulitis, chronic constipation with intermittent diarrhea.

The reason i'm bringing these things up, is that if these conditions are correct then why are you not being treated for these condition, most of which I might add do account for the sx you have stated? Fibromyalgia, Lupus, cervical kyphosis and chronic GI isssues are not nothing and irrelevant, and neither is your mental health condition or your continual recovery from anorexia/bulimia. My advice to you is to stop looking for elephants you dont already know about and deal with the ones you do, if you get appropriate treatment the journey should be lighter!

You are hunting and hunting for answers many of us truely understand but i would feel neglectful if i didnt point out that with a mental health condition such as you admit, there could be something like health anxiety or something we have talked about here which is called conversion disorder. You might find it interesting that either is not uncommon in young doctors and nurses, in their first few years working or training with seriously ill people. So if you are open to ALL possibilities then that is something you should also be looking into, seriously though I dont think you can go past things you already know.

Good luck.........JJ

[SLadylani]

I am vegetarian right now-have been pretty much since I was 6, and eat maily organic foods. My aunt has celiac amoung sooooo many other things. She has issues. She is allergic to every antibiotic, poor thing. Exccept for 3, but thats another story.

They though I was lactose intolerant so I stopped dairy for a while but still have symtoms. Now I just take the Lactaid pills to be sure. Since I started doing that the constipation actually has gotten better...hence explosive diarrhea now??

I tried wheat free foods, but I think I just do better on low residue, which would be diverticulitis, which I just found out from my mom is why my Grandpa had a colonostomy, and what my aunt has, yikes!

But I do realize what damage anorexia can do to your gut. The enemas every 3 days were for the constipation. Basically, being a nurse I know you loose no weight or calories through enemas and is much safer to your GI system than laxitives, which is why I used them, Laxitives can cause dependence, Enemas generally don't, and in nursing we start the bowel program if a patient has no bowel movement in 3 days.

Basically what led me to MS maily was I remembered that there was a stiff walk? Is that correct? I started to develop that as my knees just seem to be loosing range of motion or are just so stiff and are in pain.

Also sometimes it feels like my arm or my leg falls asleep, that tingly feeling. And it doesnt go away for a while and it comes on randomly. But I know it could be nerve or spine related as well.

I just got back from the ER. I just couldnt take the pain and broke down in tears and e-mailed my mom to call 911. The idiot MD called me a psych case and said I needed anxiety meds, and of course, chronic pain management. He said I can't go there anymore or they would refuse to treat me.

I just feel that there is no such thing as chronic painm that there has to be a cause for it. And they always brush off my other symptoms. How did you all get diagnosed and how long did it take? How old are you all?

[supermum_ms]

I'm sorry but you did say "currently i give myself enemas every 3 days" enemas are 'common' anorexic/bulimic behavior, it is wonderful that you have surpassed the urge to purge but if an enema is not for medical complications then is this not still a behavior connected with your anorexia/bulimia? Hence why the presumption that you were still active though not as you once were.

You ARE in recovery ( added stress on the word recovery as opposed to being recovered), which is again wonderful but to be realistic, almost 9 months has not given your system time and time to adjust is whats needed. I would actually say that gaining almost 32 kilo's or 70 pounds in less than 9 months could be on its own a problem, that is a lot of weight for your body to be adapting to so quickly. This may need to be monitored by a nutrian so that you are eating the right foods for YOU and also getting the most out of the nutrients in your diet.

As I said I do believe your body is screaming at you, that doesn't mean that once your system has recovered that there is not some un-named underlying condition that is causing you additional ill health. MS still would not be on the top of my list or to be honest even on my list from everything you have listed and described, MS just doesn't behave that way. So to hopefully put your mind at ease.......

Vision floater etc. - not necessarily abnormal, not a recognised sx of MS though ON, Nystagmus diplopia are connected to MS
ANA - has nothing to do with MS - see Lupus
Flare up after tonsilitis infection -  MS and other autoimmune conditions flare after infections but sx need to be consistent with the condition
debilitating fatigue - common sx of immune system working hard on an infection, post viral chronic fatigue, auto immune conditions as well as a sx of MS
GI problems - consistent with anorexia/bulimic damage, IBS, allergy - wheat intolerant etc, MS being one of 1000's of explanations
PAIN- joint pain is not a sx of MS, - see Rumatoid arthritis, Lupus etc
Nerve symptoms - if thats the paresthesia in your extremities, MS paresthesia hits in spots not usually both sides or all limbs. Pain that moves around, travels or is all over isn't consistent with MS.

(sweaty red palms, swollen lymph nodes in armpits and groin,chronic joint pain, horrible sweating, night sweats, hot flashes, sweat constantly or am freezing, tremors, twithing are consistent with viral and NOT sx of MS note tremors are sx of MS but that can not be isolated from the rest that are not)

To be clear, you display sx that are consistent with your body going through a 'storm' that may or may not be complicated by the fact you are still dealing with the effects of (for how ever long) being anorexic/bulimic. What came first the chicken or the egg? If your problems are what lead you to become anorexic/bulimic as you indicate was what happened, then I think you will find it difficult to get family to understand that in your mind the anorexia/bulimia is secondary and not primary. Its one heck of a big elephant to get around.:-)

If you were one of mine, i'd first be making sure there wasn't a virus still reaping havoc and doing absolutely everything to make sure your 100% nutritionally perfect, that would help put the elephant back in its box. I would consider the possibility that diet plays a role in the overall problem, not i might add from anorexia/bulimia but from allergy. Under medical supervision!!, exploring the option of say a trial of a wheat free and dairy free elimination diet to see if there is an allergy like Cronin's (sp) at play. I'd also be exploring the possibility of some form of autonomatic dysfunction and genetic or familial problems such as the Lupus a little more.

Good luck...........JJ



  

[Deb61]

What is the reading on your ANA?  If it's high, I would suspect that it's lupus, Sjogren's Disease, or another autoimmune disease.  Many of these symptoms overlap with MS, but some of the ones that you mentioned don't:  the fevers, swollen glands, nightsweats, frequent infections, etc.  Lupus can cause nervous system issues and can even contribute and/or go hand-in-hand with the anorexia ecause of the gi problems when the disease effects the intestinal organs.  

It sounds to me like you are difinitely ill with something, but it sounds like it's rheumatological.  In fact, you sound like you could be the poster girl for lupus, but I'm not a doctor.  I'd ask your PCP to write a referral to a rheumatologist.  

Best of wishes,
Deb

[summerluvr]

Hi I am not a doctor!  I also do not have MS, but I presented with many symptoms consistent with MS from my nerves being affected by my illness so I stick around here because I got support here btefore  my diagnosis.

When was the last time you had basic blood works such as a CBC, white count and thyroid.  Some things you are mentioning don't sound like MS, such as fevers , nightsweats, frequent infections, you mention MRSA, Tonsilities, also joint and muscle pain.

it's possible to have more then one thing going on to.  Your recovering from eating disorders may be able to explain your GI symptoms (my sister is a recovered anorexic) but can't really explain your other symptoms which may have a different explanation.

[SLadylani]

Hi JJ-

I dont think I made it clear that I am and have been in recovery from anorexia/bulimia for almost 9 months. I gained 70lbs and have not purged. I work a 12 step program every day, love my body, and love my relationship with food,

Symtpoms that lead me to think MS:

-Vision floaters/decreasing acuity diagnosed in 8th grade. Alwyas had perfect vision before.
-Positive ANA
-This flareup occured after a tonsilitis infection would not go away
-debbilitiating fatigue is the worst of all, Im so tired it just hurts me, I cant explain it
-GI problems
-PAIN
-Nerve symtpoms.

The frustrating thing was I was promised these symptoms would go away when I recovered from my eating disorder, how come they got worse? I always told people, please I dont want to gain weight, because thats when the joint pain comes back. Im just sick and tired of being sick and tired, literally, and felt better when I was anorexic. At least my heart is in the right place today.

So the elephant in the room still lies with the doctors, I have done my part, now they need to do theirs.

[supermum_ms]

Hi,

I'm not sure if you realise it but you've posted in the MS forum. You may not have many people respond due to your post being one large block, which is very difficult to read when you have sight issues, which many people with MS have, so if you could (if you do post again) please break up your post into small sections.

It was difficult to read but a few things stood out, your totality of sx dont sound consistent with MS, and in MS sx dont present as you have described. Your saying you dont have a psychological condition but I think even you would agree that you are quite anxious about your health and you are dealing with anorexia with add on bulimia, all of which have a psychological component and not so easy to ignore in your overall picture.

I realise that you dont like whats happening to you to be blamed on your anorexia/bulimia but I dont think you can dismiss the reality of what your body is going through, your mind, body and sole is screaming at you that something is wrong and it is.

I strongly believe that your focus needs to be on dealing with the nutritional elements necessary for a healthy existance, as an RN you will be more than aware of what physical and psychological manifestations develope when there is abuse of the body. Seeing the big picture in what your doing to your self, is not always easy but i think you maybe open enough to realise that if you continue to put your body through the cycle of abuse, the concequence of the act is going to be exactly what you are physically and negatively dealing with now.

You will not be able to change your physical out come by avoiding dealing with the elephant in the room, and the elephant in the room is your anorexia/bulimia, so start there!

Good luck..............JJ