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Old 03-18-2009, 08:17 PM   #1
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Seeking Advice!

I am 25 years old and I am currently on a medical leave of absence from my job due to some ongoing conditions. Please read my story and offer any insight/input or advice.

At age 11, I was diagnosed with polyarticular juvenile rheumatoid arthritis. This past summer, it went into remission and only flares up now occasionally, a couple of times a month, but for the most part is under control. In high school, I was diagnosed with Graves' Disease which is now also under control. In 2005, I had a bout of Bell's Palsy for a little over 3 months.

This past summer (late July) I started feeling horrible on a daily basis. I went to my doctor with a low-grade fever and a myriad of other symptoms including constipation, dizziness, fatigue, sudden migraines (which I'd never had before), shooting pains in my head, loss of appetite, and glands ached. I thought I had a cold or flu -- some type of virus. He dismissed it as nothing, and the fever didn't really concern him -- none of it did. He gave me an antibiotic and sent me on my way.

I did some research online and took it upon myself to see an endocrinologist who ran blood tests and found that I had a sky-high antibody level indicative of Celiac Disease. She also suspected that I have Reactive Hypoglycemia. I went on the gluten-free diet in late September and also do not eat a lot of sugar/carbs.

After 5+ months or so, I still did not feel better from GF diet. I may have been "glutened" once or twice accidentally, but I myself was and am very strict. I ended up having an endscopy done. They found that my villi weren't even scallopped but completely flattened. They also found that I had red lesions in my esophagus and intestine, and also that my food was just sitting in my stomach not really emptying into my large intestine. They ended up taking 3 biopsies instead of one. They found no malignancy, thank goodness. They did realize the Celiac is very advanced, and also believe that it caused reflux (even though I never get heartburn -- I don't get it?!?) and possible gastroparesis. Well, that was about a month ago and I'm still not better at all, even though I am now VERY strict w/ GF diet (almost paranoid!)

I now have more symptoms than when initially diagnosed. My hands and feet (particularly feet) are always cold (freezing) and when I was at my neurologist, they found that I have a slight loss of temperature sensation in my feet. I also have very shaky hands occasionally (tremors) and general overall weakness, as well as constant and nonstop ringing in my ears (tinnitus) for about 6 months now that never goes away. The fatigue that I experience on a daily basis is debilatating. The headaches are daily. My neurologist first gave me Topamax which didn't help. I now have Imitrex nasal spray to use as-needed. My brain MRI's were normal. My blood work is usually normal. (Aside from one time when my progesterone level was sky-high....but it was a fluke, I think b/c next time it was normal.)

I used to have diahrea alternating w/ constipation. Now, no diahrrea which is good but still do not have bowel movements very often. Since August I have lost about 15 lbs. I eat as I am supposed to and stick to my diet, but I honestly lately have no appetite at all. (This is a newer development.) Additionally, I suddenly am having a LOT of trouble sleeping. I usually never had problems sleeping (aside from the fact I'd sleep a lot and still be tired) -- I am exhausted but will just lay in bed awake even though I'd give anything to fall asleep. This is also a new development.

My neurologist thinks that my Celiac may have caused some nerve damage, and I have to get some test done in May to test my Autonomic Nervous System. I experience "brain fog" a lot - feeling detached, mental sluggishness, difficulty thinking clearly or concentrating. This is particularly difficult, being a writer and a graduate student, and an academic at heart. This is very frustrating but could be from malabsoprtion/malnutrition b/c of the Celiac. Other things to mention are that my body temperature is typically lower than the average 98.6 and closer to 97 or so. I do not know how relevant that is. I should also mention that I have a recent history of pre-cancerous cells on the cervix (cervical dysplasia) but that after 2 or 3 procedures, the pre-cancerous cells are gone (at least last pap was normal.) My arthritis flares sometimes when the other symptoms are particularly bad. One more thing I should mention is that I have some odd hair growth (hirsutism I think she called it?) -- but, that could be from arthritis meds I guess or b/c I have a little bit of Italian in me?

My gastroenterologist and endocrinologist suspect that due to my high antibody levels re: Celiac and also the extent of my flattened villi, that I have had Celiac disease for a very long time, and it went undiagnosed. I worry b/c I've read that the longer one goes w/o diagnosis, the harder it is to recover. Also if is Refractory, I've read that it often turns malignant. My neurologist said that sometimes intestinal lymphoma in its early stages will not affect blood test results. I assume I do not have that though if endoscopy is normal. Right??

I currently am off all biological agents and all rheumatoid arthritis meds (disease modifying drugs, etc.) I occasionally do take prednisone (steroid) for a bad flare-up. I take Vicodin as needed also (very low dose.) The only meds I am on now are Protonix, gabopentin (I think that is what it is called) and sometimes Imitrex, as well as a water pill. I do take a lot of (gluten-free) vitamin supplements. I am 25, and I weigh 105 lbs. at a height of 5'3 which I think is still in the normal/healthy range although it's almost 15 lbs. less than summer.

My biggest concern is that I do not FEEL healthy. I know my body, and I can't shake the feeling that something more is wrong. I feel like the doctors are missing something. Hopefully not cancer, but WHAT IF? That question always runs through my mind. It might not be something that extreme (I pray not) -- but what if it is something like an adrenal problem or thyroid issue (last thyroid tests in Sept. were normal, got more bloodwork for that today). I thank God that my brain MRI's were normal. I have not had any problems w/ my glands which is good. I have a family history of MS but, again, brain scans were normal and blood work is normal.

How reliable is bloodwork? Would anyone seek any 2nd opinions? I just feel as though things are getting worse not better. I feel like, on many days, that my body is quite literally giving up on me. I feel like all of these seemingly random symptoms have to somehow be connected. I do not want anything else to be wrong, but I just want to know what's going on -- why am I not improving? Are all these things connected? What is the next step I should take??

I am young, active, and a hard worker. I am very sad to have to have taken a temporary medical leave of absence. I may not be able to pursue my planned career due to my conditions. However, I am not depressed. I am very happy in all other areas of my life. It's just that my health is majorly affecting me and I just want answers and want to get better.

Please offer any advice/input. Nothing will scare me, I just want to stay on top of things and get healthy while I am young and still can! I need to do what I can do solve whatever problems I have in front of me. I just have a nagging feeling that there is something more than meets the eye and I'd appreciate some help.

In the meantime, prayers are welcome I hope to get back to being healthy once again!

THANK YOU for reading this (very long) post. I am just feeling a bit helpless, and some of my doctors seem hopeless, so, I'm out to prove them wrong!

Thanks and God Bless! Best wishes to all.

PS: It is not letting me add tags for some reason. Maybe you guys can add some for me Thanks!

"Be Kinder than Necessary, For Everyone You Meet is Fighting Some Kind of Battle."

"God Knows More of Our Worried Hearts Than We Do Ourselves."

 
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Old 03-18-2009, 08:22 PM   #2
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Re: Seeking Advice!

I should also mention that I was on Enbrel for about 3 yrs and went off of it this summer.

 
Old 03-19-2009, 02:06 PM   #3
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Re: JRA & many other problems....help!

I'm not sure what to tell you. I did read your whole story and it seems like you have had lots of problems (which everyone does at some point in their life). Once I turned 24 like one month ago...I have been going through a lot of medical problems too. It's like one thing after another. And it's hard to deal with. I don't know you, but my prayers will be out with you and I hope everything turns out ok!!! Good luck!

Last edited by JMYHNY; 03-19-2009 at 02:08 PM.

 
Old 03-19-2009, 02:58 PM   #4
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Re: Seeking Advice!

Many of your symptoms/conditions are experienced by people with Lyme disease and people who live in PA are at high risk for this condition. Most doctors lack the knowledge and the expertise to diagnose this condition so many who have been diagnosed suggest seeing a Lyme Literate Medical Doctor.

 
Old 03-19-2009, 03:38 PM   #5
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Re: Seeking Advice!

Dear Amms, I am so sorry you are feeling so rotton. Try not to worry. God is looking out for you. I know it is scary not knowing what is going on. I feel that way too about my ailments. This is a great place to find others to talk to about what you are going through. I am not sure what you have, and only a doctor will know. I would just keep having tests run. I was going to say a thyroid disorder. But there are different things that could be going on, including food allergies. Try not to think the worst. That is not what God wants for us. I do the same thing. Hang in there, and just keep pluggin away having tests run and eat as healthy as you can. Hang in there! Here to talk anytime.

 
Old 03-19-2009, 11:49 PM   #6
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Re: JRA & many other problems....help!

AH HA!! Like me you have the trifecta - juvenile arthritis, celiac and autoimmune thyroid disease. [url]http://www.ncbi.nlm.nih.gov/pubmed/15695302[/url]

It can take up to two years for your intestines to heal from celiac disease, so I wouldn't worry about refractory just yet. Gastroparesis is a common side effect of celiac and should improve as your intestine heals. You can have gastritis (red, acidic stomach, often a precursor to ulcer) without reflux symptoms. Did they test you for H. Pylori?

Celiac can cause migraine headaches, amoung other neurological problems, and considering how beat up your small intestine is right now, I wouldn't be surprised if that's it.

The 98.6 "average" body temperature is an urban myth. A slightly higher or lower temp is perfectly normal. My "average" is usually around 96.7 ~ when I was a kid my mother used to tell the school nurse to send me home if I had a "normal temp", 'cause for me 98.6 was a fever!

I would seek a second opinion from another endocrinologist. Alot of your mystery symptoms sound like you're bouncing back and forth from hypo-thyroid to hyper-thyroid. When was your last thyroid ultrasound?

 
Old 03-20-2009, 01:32 AM   #7
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Re: Seeking Advice!

Hello Amms, the outlook for celiac disease is that symptoms do clear up once removal of all gluten is achieved. There is no limit to the amount of meat, fish, eggs, dairy products, vegetable, fruit, rice and corn but you must be wary of all foods containing wheat, rye, barley and oats. Check very closely all labels on food even ice cream, salad dressings, condiments and a lot of other foods one wouldn't expect gluten. I hope you start to feel better soon and am sorry that you are so under. You do not have any diagnosis of the *C* so now you can relax. Re-evaluate what you are eating that may contain gluten. Good luck!

 
Old 03-20-2009, 12:48 PM   #8
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Re: Seeking Advice!

Thank you. I have met with 2 dieticians and also have lots of books and resources that I consult. I basically only eat foods that say gluten-free on them, or, if uncertain, I always call the manufacturer. At the very beginning I was glutened by accident once or twice, but I know for certain that at least for 3 or 4 months now I've been totally GF. At least, it would seem like it. Yes, no *c* diagosis is good, but of course what my neurologist said about it not necessarily "showing up" right away is scary. So is the thought that if I DO have Refractory it almost always advances to that. But for right now I praise God every day that it has NOT gotten to that point and try to stay optimistic that it WON'T. I do all I can including eating foods very high in antioxidants, etc. I think that I will get better soon, I'm not sure why it is taking me more time than most (that's why I wonder about some other underlying condition - thyroid or another autoimmune thing, etc...who knows??) But hopefully all of the puzzle pieces will come together soon. I really appreciate your reply, and as weird as it sounds I actually kind of hope that maybe I have been inadvertantly glutened here and there for at least then it would EXPLAIN my slow recovery! Thanks for writing God bless & TGIF!

 
Old 03-20-2009, 12:50 PM   #9
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Re: Seeking Advice!

Thank you, but my Rheumatologist has tested me for Lyme's Disease and West Nile Virus. Both were negative. I was bit by a tick as a child but not a deer tick. I've been tested for it 2x in the past 10 years, the most recent being over the summer, so I don't think it is that. Although, I do a lot of research and educate myself, so it is odd b/c as you'd mentioned I do have a ton of the symptoms! Thanks anyway for the suggestion!! God Bless & TGIF


Quote:
Originally Posted by bethsheba View Post
Many of your symptoms/conditions are experienced by people with Lyme disease and people who live in PA are at high risk for this condition. Most doctors lack the knowledge and the expertise to diagnose this condition so many who have been diagnosed suggest seeing a Lyme Literate Medical Doctor.

 
Old 03-20-2009, 12:53 PM   #10
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Re: Seeking Advice!

Thanks! I'm hanging in there, getting tons of tests done, seeking 2nd opinions, and even trying natural/alternative therapies. I am trying to stay strong and positive and know that God will get me thru this all. It would be hard for anyone but I hate being so young and feeling like this! We will see how my thyroid tests and QSART tests come out. I think I worried myself a lot b/c on top of everything I'd mentioned in the post, 2 things I forgot to mention were that I bruise very easily and they take a long time to go away, and also when all the symptoms started I'd found a very small (b.b. sized) lump on my face near my eye socket (like on a sinus I think) but my PCP and dermatologist said it is nothing. But things like that worry you, ya know, then all the stuff that comes along w/ Celiac coupled w/ another autoimmune disease -- more than anything it is frustrating and overwhelming! I'm past "scared" and now just annoyed - I want to get better, haha!!! Thank you so much for your reply and your kind words, though. It is much appreciated God Bless & TGIF!


Quote:
Originally Posted by TEdds83 View Post
Dear Amms, I am so sorry you are feeling so rotton. Try not to worry. God is looking out for you. I know it is scary not knowing what is going on. I feel that way too about my ailments. This is a great place to find others to talk to about what you are going through. I am not sure what you have, and only a doctor will know. I would just keep having tests run. I was going to say a thyroid disorder. But there are different things that could be going on, including food allergies. Try not to think the worst. That is not what God wants for us. I do the same thing. Hang in there, and just keep pluggin away having tests run and eat as healthy as you can. Hang in there! Here to talk anytime.

 
Old 03-20-2009, 12:58 PM   #11
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Re: JRA & many other problems....help!

I have never had a thyroid ultrasound - just blood tests. I know autoimmune thyroid disease often comes w/ both CD & RA. So many of my symptoms now seem like hypo and when I was younger seemed hyper. I have tried everything from alternative therapies to all-natural regimens...nothing is really working for me....maybe i will seek 2nd opinion from another endo. I hope it isn't refractory Celiac, most discussion boards I've seen, literature I've been given, books I've read, and even my specialists say that most ppl at least FEEL better within 2-6 weeks and so that's what bothers me. I could care less about having to be on the diet, I just don't FEEL well ya know?? Then other weird things I forgot to mentioned that I'd worried about is very easy bruising and they take a long time to go away, and also I found a lump under my eye like on the eye socket near sinus that my primary care doc said was nothing and one of my dermatologists said isnt a concern unless it gets bigger. It is all just a lot to deal with - the uncertainty, not knowing, the frustration. At this point I'm sort of beyond being worried/scared and what I'm feeling more is frustration of "not knowing." Plus a part of me gets frustrated that doctors always want to treat the "symptoms" and treat each illness INDIVIDUALLY instead of seeking out an underlying cause....ya know? But anyway, thanks for the info and the kind words!!!!!!

Last edited by moderator2; 03-20-2009 at 05:10 PM.

 
Old 03-20-2009, 01:00 PM   #12
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Re: Help!

Hi sorry for your current problems, it sounds like you are going through a lot. i am not an expert, but i do want to emphasis that if your 'DOCTORS" are feeling hopeless, its time you move QUICKLY on to other doctors. I was diagnosed with Chronic Fatigue syndrome 21 years ago with the help of a good doctor. and if you know anything about CFS they love to say "i cant find something so there is nothing its all my head". that was the worst part of my CFS but dealing with a doctor WILLING TO TAKE ANY STEP to help you is the one you want to go to. that kills me when a PAID DOCTOR says nothing is wrong when obviously you are feeling different. Even if he asks you to speak to a phycologist as ONE STEP IN getting better is better then not taking any step at all and saying its hopeless grrrrrrrrrrrrrrrrrrrrrrrrrr!!! please find another doctor who cares. hope i made some sence.

 
Old 03-20-2009, 01:09 PM   #13
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Re: Help!

They all "care" but, they all feel that there is not much more that can be done to help me other than the current meds that I am on plus the GF diet. They also don't really communicate w/ one another a lot -- which is to be expected -- but then it is extra work for me as a patient to have to photocopy ALL labs/test results/records and relay info from one to another. It bothers me b/c I feel as though they each treat their own little speciality area and treat each symptom WITHOUT looking at the "big picture" per say and trying to put all of the puzzle pieces together. I feel that there has to be an underlying cause and I am beyond the point of being scared/worried, at this point I am just VERY FRUSTRATED that there is seemingly not much more that can be done, plus just a constant waiting game and the uncertainty of "not knowing" yet feeling something more is wrong..ya know? Thank you so much for your kind words. I have struggled w/ Fibromyalgia in the past so I understand CFS. Luckily with yoga, meds, etc. the fibro sort of "went away"...but I still do struggle w/ the Celiac, Arthritis, and all of the other things listed below. It sucks, but I'm living my life, living each day one day at a time, and trying to stay strong, hopeful, and optimistic. Thanks again for your reply, and best wishes to you!

PS: My PCP basically told me I was being a hypochondriac this past summer. I took it into my own hands and saw an endocrinologist, neurologist, and gastroenterologist and through biopsies and bloodwork the Celiac, gastroparesis, reflux, reactive hypoglycemia has been confirmed and neuro suspects nerve damage. So, that really proved my primary care doctor wrong! I hope he feels bad for ever suggesting that it was 'all in my head.' He told me I had anxiety - doctors like HIM were what was causing me the anxiety! Thank goodness these other ones are at least trying SOMEWHAT to find answers and solutions!!!! I still unfortunately feel skeptical about and suspicious of the medical world, sadly. Anyway...best of luck to you and I hope that you are feeling OK!


Quote:
Originally Posted by highseas View Post
Hi sorry for your current problems, it sounds like you are going through a lot. i am not an expert, but i do want to emphasis that if your 'DOCTORS" are feeling hopeless, its time you move QUICKLY on to other doctors. I was diagnosed with Chronic Fatigue syndrome 21 years ago with the help of a good doctor. and if you know anything about CFS they love to say "i cant find something so there is nothing its all my head". that was the worst part of my CFS but dealing with a doctor WILLING TO TAKE ANY STEP to help you is the one you want to go to. that kills me when a PAID DOCTOR says nothing is wrong when obviously you are feeling different. Even if he asks you to speak to a phycologist as ONE STEP IN getting better is better then not taking any step at all and saying its hopeless grrrrrrrrrrrrrrrrrrrrrrrrrr!!! please find another doctor who cares. hope i made some sence.

 
Old 03-20-2009, 05:58 PM   #14
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Re: Seeking Advice!

Amms,

Thanks for the personal response, it is very much appreciated! I know it takes time and thought, and energy to respond, and I want you to know that I appreciate your thoughts on my comments.

I would like to add just a couple of things as some things may have changed since you've done your reading (and good for you for doing that reading, )!

1. Tests for lyme are unreliable...that is why Lyme Literate Medical Doctors diagnose and treat and based on symptoms, not on test results. Rheumatologists, dermatologists, infectious disease specialists, and others most likely lack the necessary experience and education to id and to treat lyme.

2. More than 5 different kinds of ticks can transmit lyme...and now they think that mosquitoes, flies, gnats, spiders, and other insects may be capable of transmitting the disease also (it can also be transmitted in the womb, and theoretically by blood transfusion).

3. Ticks carry other illnesses (coinfections), and like lyme, we just don't have reliable tests at this time...but we have treatments.

I would hope that you might check out the Lyme Boards...there are some very knowledgable posters with first hand experience over there.

Take care and God Bless! You sound like a very special person!

Bethsheba

 
Old 03-23-2009, 04:10 PM   #15
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Re: Seeking Advice!

How would you recommend finding a "lime-literate" doctor? What type of doctor usually deals with this?

 
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