Confused and of course, very concerned...

[cardawnia]

I have been feeling extremely unwell for over 9 months now -  have gone to my PC several times and now am seeing a GI and  Neurologist. I am nauseous most of the time, have pain in both right and left quadrants of my upper abdomen, have lost, unintentionally, about 35 pounds now. I also have night sweats and trouble sleeping. I am post-menopausal so the sweats cannot be hormone related. I also have diabetes and HBP. My 'normal' temperature is usually around 97 but lately has been going up around what's considered 'normal' for others or even a bit higher. I also feel alternating 'hot and sweating' one minute and 'chilling' the next. At night I feel chilly so cover with my blanket and then a minute or more later I have to throw the covers off! My pillow, clothes and sheets, etc, are so drenched I have to get towels and wrap them around me and change them sometimes more than once.

Now, on my CBC & Diff lab results, my LYMPH is 19.2 and my NEUTROPHIL is 8. I also have discovered a 'baseball-size' lump under my left armpit - I really have no idea how long it has been there but it couldn't have been long - I had noticed that my underarm seemed (to me) 'fatter' than it had ever been. (LOL) I have had my PC examine it and was told it is probably a lipoma. However, it seemed very firm to me (not rubbery, or like bread dough) and my left arm is now feeling tingly all the way to my fingertips. I am so exhausted all the time, I can hardly do anything anymore.

I had a CT scan of my abdomen today and will have a MRI brain scan tomorrow (there is a possibility I have been experiencing TIA's - I am having trouble 'finding' words and even speaking out the one I'm intending to say and balance problems - I walk like I'm drunk!) and a endoscopy/colonoscopy on Friday. (I have also had chronic diarrhea for over 9 months also.)

I just turned 64, but I have always been considered at least 20 years younger than I am - until now.

I know I have several things going on - but am hoping someone may have experienced something similar and may be able to help give me some insight.

[spoilher101]

Just wanted to let u know, when u r on medicare, make sure u go to dept. of aging in ur state, & have them set u up with a medi-gap coverage to cover the other 20 percent so u wont have any co-pays! Medicare only pays 80 percent, 7 believe me, your bills will rack up without one!(usually fr a good plan, its under $150.00 a month, & 'ship' can set it all up for you. They r free. Also any hospital knows this. OK, now hope you get the proper care u need! If u get fed up, i would call 1 of the leading hospitals in the United states. i PREFER THE cLEVELAND cLINIC.(sorry about the cap letters. losing site from neuritis. Good Luck!!

[cardawnia]

Hello!

Thank you for responding to me!
I really appreciate that!

Yes, I have been tested for EVERYTHING he knew to test for - including ONE test that 'cost' over $24000 dollars for any 'uninsured' person!

My GI has basically told me to go to some 'teaching' medical facility and he would send my records to them. However, my husband and I have decided that right now we would just continue on here and wait till I'm on Medicare (which is next month) and then consult another doctor, locally.

I am not going to 'give up' or even 'give in'! Everyone must eventually 'die' and I'm not afraid to, but I also want to LIVE - not just 'survive'! I thank our Creator that He has given me a BRAIN, a 'DIE-HARD' attitude and an optimistic outlook on Life!

Thank you for sharing your thoughts with me! I'm glad you have 'made it through' your terrible diagnosis and journey also!

Please feel free to contact me again - anytime!

Sincerely Yours!

[Mochadelicious]

Hi Carla,
I've sent you a p.m. so please check your Medhelp inbox.   Sometimes it feels really good just to get everything off your chest, especially with others who have had similar experiences (like Hickgirl61 and myself).  I do hope you are feeling better today.

[Hickgirl61]

Hi , I have just read your posts. I totally understand your frustration. When the doctors just brush off what they can figure out and all the unwanted/ unneeded advise from people. It's overwhelming.
I wanted to know I your GI had tested you for H-pylori. I was having digestive issues. I had trouble eating, trouble swallowing and it was very miserable. I hope you get to the bottom of the problem because being treated for the symptoms and not finding the cause is an expensive and emotionally taxing endeavor.
I am a cancer survivor and I had a long 5 year fight to get diagnosed. I am an ovarian cancer patient and I just happened to read your posts. I am in no way suggesting you have cancer. I was just curious about the H-pylori bacterial test. It just takes a simple breath test.  
I wish you the best.  I will keep looking for your news.

[cardawnia]

Hello! It's time to update you on how I'm feeling.

My GI 'doctor' has 'given up' on finding a reason for my continual weight loss (and other symptoms)!

But I think I know WHY I'm losing so MUCH weight -  I just have NO APPETITE anymore for all the 'food' the 'world' gives us to eat!

Well, it's really a bit more 'intricate' than that, I'm sure, but the bottom line is:
I am just plain 'sick to my stomach' from all the 'TRUTH' I have had to 'STUFF DOWN' so as NOT to 'upset' anyone ELSE! And... it has taken a 'toll' on my body!

The 'doctors' I have consulted - have tested me every WHICH way - and some of those TESTS are VERY personal AND disgusting (!) I'm sure you know! AND VERY EXPENSIVE!

When your income is as close to 'NIL' as MINE is - even WITH the 'new' insurance we are ALL being FORCED to have - not for US, but to 'insure' that the 'medical personnel' can receive what THEY think THEY 'need' to live what THEY think THEY 'deserve' - because of their 'expertise'!

Well, for being so 'smart' they sure don't always know much of anything - at least not in my case!

I've found 'in MY experiences' with MANY DOCTORS - MOST of the time they just give you 'SOMETHING' to 'calm you down' (cover your SYMPTOMS)  and then pretty much TELL you - commonsense things - like 'eat a balanced diet' - 'get a good night's sleep' - 'stay away from harmful substances' - etc. etc. etc.! DUH! 'Try not to be STRESSED' and THEN they give you a WHOPPING BILL not really caring that THAT might be giving you even MORE STRESS! And if you DARE be 'upset' or tell them how MUCH PAIN you are in - both PHYSICAL and EMOTIONAL - the FIRST thing they want you to do is COVER THAT UP cause then THEY might have to 'feel' some of YOUR 'distress' (!) and THEY want YOU to 'be calm' and 'QUIET'!

I think you might see where I'm going with this but to 'SPELL' it out - the good, 'old-fashioned' 'advice' from a doctor USED TO BE - 'Take two aspirin and see me in the morning'! NOW - our MODERN advice is - 'Here - take these EXPENSIVE MEDICATIONS - do all the 'commonsense' things I've already TOLD you AND charged you for - and go home and let some TIME pass and hopefully enough TIME will have passed by the time I see you again (so I can CHARGE YOU MORE money and MAYBE you'll be BETTER - AND we'll have to KEEP having you check BACK IN so we can tell you THE SAME THINGS OVER AND OVER [and charge you for it AGAIN]!

(TIME IS and always HAS BEEN - GOD'S - 'natural remedy' since the BEGINNING of TIME!)

They (doctors) REALLY don't know much more than even a 'SEMI-intelligent ' LAY-person! THEY  have JUST 'studied' the workings of the human body just like a 'mechanic' has 'studied' the workings of a motor! Same with astronauts - they, too, are JUST 'glorified' mechanics!

Whatever IS going on with me is - beyond 'their understanding'!

I certainly THANK my CREATOR for giving ME a 'brain' AND 'commonsense'
- because I didn't NEED THAT 'advice' from them!

What I NEED is 'someone' (everyone around me?) to SHUT their OWN mouths and STOP 'spewing' the 'hate' and 'vehemence' against 'ANYTHING' and 'EVERYTHING' - THEY don't LIKE - and ESPECIALLY what THEY CANNOT and SHOULD not even TRY to control!

Well, since 'my doctors' cannot find ANYTHING - 'clinically' - WRONG with me - it MUST be my 'feelings' -  which as I've said - I've been TOLD NOT to express! (AND especially NOT in PUBLIC places!)

Well, guess what? If I REMAIN - 'SILENT' - just to keep 'the peace' (of WHOSE mind?) around me - I MAY just DIE from all the 'PAIN' I feel - so again - GUESS WHAT? I'm going to let it ALL out and see where the 'truth' falls!

I feel better already! I'm now down to 120 lbs - 'fighting  weight' - ! LOL!
I do NOT say things to HURT people - to 'belittle' them (as IS and HAS been DONE to ME my ENTIRE LIFE!) but it IS TIME for me to 'OPEN MY MOUTH' and - I WILL - tell - 'whoever' is in my 'vicinity' the things THEY DO and THINK that absolutely make me SICK!!!

If they don't like it - TOUGH! - cause it is TIME to let SOME of this TRUTH out - truth that is OBVIOUSLY 'poisoning' my desire to EVEN STAY ALIVE and SHARE this WORLD with THEIR 'NEGATIVE" attitudes.

I DO NOT - DO - 'pet tricks' - FOR ANYBODY (!) and I am NOT going to 'lay down and DIE' for NO GOOD REASON except THEIR 'peace of MIND'!

Obviously, those 'self-centered and SELFISH' people - (MANY ARE in this WORLD around US!) certainly have NO PROBLEM SHOWING and even TELLING me THEY DO NOT - CARE (!) - how BAD I'm FEELING! And NO (!) - I WILL NOT - take ANY - 'medications' - TO CALM me DOWN so they don't have to SEE or HEAR how THEIR actions AND - WORDS - cut me to the quick!

Now you know - I hope - as do I - 'what' MUST be 'WRONG' with me!

I certainly DO thank YOU for giving me an 'ear' and at LEAST - 'trying to CARE' - about how I'M - FEELING - and GIVING - me - some of YOUR - PRECIOUS and FINITE - TIME - to ask if you could help - even IF you've NEVER MET ME! You are a BREATH of FRESH air in my oh so STALE state of my LIFE!

I pray YOU are doing better and better! May your BLESSINGS only INCREASE!

Sincerely - Carla HR!

[cardawnia]

Hi - Everyone - a quick update -

I just received blood work results with absolute eosinophils at 525. What does this signify to you?

My  urea nitrogen is 41
            creatinine is 1.63

I am a bit disturbed about these numbers - because -
I have been aware of my gfr # dropping over the last 8 years. As of last August my gfr had dropped to 51.

Not terrible, but I knew I still needed to watch it.
I had several tests run in Sept and Oct - including a couple with contrast dye.
For the last few years I have NOT been given the dye because of my lowered gfr #. So they re-checked mine (10 days after last test) and gfr came up >60. I was very surprised as my numbers have been below 60 for years and as such I questioned these results. Everyone just says oh well you must be okay and so they administered the contrast dye.

Now 3 months later - my gfr is 33 ???? I am not happy and a bit concerned. Who do I talk to about this? My PC? Do I need to consult a Nephrologist?
This blood test was ordered by my GI.

I have lost 2 more pounds. Still have very little appetite and most always nauseous. Still have food aversions and smell aversions - I can only tolerate  bland - no texture food ( and THIS is definitely NOT me! I LOVE food and and am a gourmet cook, if I choose to be!), I continue to try to find something - anything - I can eat.

Recently I have been craving malted - so my husband brought me home a vanilla malted (as per request) milkshake and it has helped to calm my stomach and also give me a few carbs and calories, which I need.

Another test has been ordered, an endoscopic ultrasound of the pancreas. So, tomorrow, I'm going for the 'consultation' with this 2nd GI dr. and set up the date for the test.

My gastric emptying test came back -'within normal limits' - thank God! so it seems that the Diabetic gastronomic disorder is not my problem.

I asked for a lactase dehtdrogenase test to see if I had markers for lymphoma. According to this test my numbers are 144. That's good, right?

I am trying to stay positive, each day is a challenge, but I don't give up!

Thank you for you comments. I appreciate all your input.

[CML2014]

Hi Cardawnia,

I was just catching up on the postings and read your discussion with Mochadelicious.  WOW!!!  That is all I can say--but would like very much to know how you are doing today. Could you give us an update? Have you found the cause of your symptoms?

Thank you
Best wishes,
CML

[Mochadelicious]

Yes, please keep us posted.  I hope you are able to get to the bottom what is causing all your symptoms.  

[cardawnia]

Hi again... I'm fairly certain my lump was a lipoma - which is a 'fatty-tissue' tumor. I guess the fat cells are easily recognizable as just that.

However, since I am still experiencing all the other symptoms, I am very aware of possibilities - I have another visit coming up with my GI and a couple other things - like an echo-cardiogram on Wednesday. (One positive 'side-effect' of having lost so much weight --- I'm taking less HBP meds now!)  I will continue to post as I learn new things.

Thank you again for your thoughts - they do help in my trying to sort out what to do next.

[Mochadelicious]

Hi Cardawnia,
Please understand that I am not a doctor and I draw my information from my own experiences as a Lymphoma survivor so I could be way off on my suggestion, but in my opinion it's probably best to leave no stone unturned.   You do have some definite symptoms that raise a few red flags: night sweats, weight loss, fevers and extreme tiredness.  You also had a very large lump under your arm.  On the flip side, you also have some symptoms that aren't typical Lymphoma symptoms...balance/cognitive issues, pain in the abdomen...although it is possible to have swollen nodes internally that can "push" up against organs and cause pain.  You also have other pre-existing health issues that make a clear cut diagnosis difficult.  

So, I'm assuming that because you had abdominal biopsies (3 of them), that you had some swollen nodes in your abdomen that they caught on one of your scans?  I think it's wonderful news that they all came back negative, but it just seemed odd to me that they didn't send samples from your underarm lump to a pathology lab, and diagnosed it as a lipoma by just looking at it.  I'm not experienced with lipomas and I don't know if this is typically how they are diagnosed, so again, I could be way off on this.  A few years ago I met someone who also presented to her doctor with a very large, softball size lump under her arm.  Her lump did turn out to be lymphoma, but that doesn't mean yours is.  

[cardawnia]

??? Could you please tell me what causes you to think this??? My 'lipoma'? Seriously. Please explain your thoughts. Thank you.

[Mochadelicious]

Glad to hear you have some appointments set up and you're taking charge of your health.  Not to scare you, but you might consider requesting to have another pathology done from an outside larger lab.  Your doctor should be able to send the preserved slides from your biopsy to the lab.  The reason I suggest this is for several reasons.  One, you really are presenting with quite a few concerning symptoms that could point to Lymphoma.  Two, you can have perfectly normal blood work and still have Lymphoma.  Blood work is not a reliable diagnostic tool.  Three, Lymphoma is not an easily diagnosed disease and sometimes it can be overlooked by smaller labs.  This is what happened to me.  And, if by chance it is lymphoma, it is imperative that the lab figure out what subtype of lymphoma it is (there are many), as treatments are matched to your particular lymphoma subtype.  I had two additional pathology labs review my biopsy slides after it was discovered that my small town lab had missed the diagnosis a year prior.  One was called Phenopath lab out of Seattle, WA and the other was through Fred Hutchinsons Cancer Center in Seattle.  

I really don't want to scare you and being that I'm not a doctor there is a good chance I'm completely wrong, but I would want to rule it out for sure.  

[cardawnia]

Hi - Yes it was a bit disturbing to me finding this lump under my left arm - (found the end of August) it seemed the size of a golf ball. By the time I had it  removed (beginning of October) it had grown to look like a softball! As you see, it grew excessively large and fast - something that is unusual, I understand, but fortunately, it was (is) benign.

I have been seeing a GI doctor and after all the tests, so far, he has come to the conclusion that I may be (not definite, yet) suffering from Autonomic neuropathy. Doesn't sound good to me, but it seems to cover a lot of issues I've been experiencing over the last few years. I don't really understand how I could develop this, since my blood sugar #'s have never been way out of control. From what I understand, it can gradually happen over a period of years, and probably was already present when I was finally diagnosed as 'diabetic', in August of 2006.

I have lost over 50 pounds altogether now, in little over a year, and however much I enjoy being 'smaller' again, it's a bit disconcerting to keep losing weight!

I finally have insurance, so have made appropriate appointments with several Dr.s - including a Neurosurgeon who will be addressing my cervical spine deterioration issues. I know I need 'fusing' of 4 or 5 vertebrae - it scares me some, but the pain and the light-headedness I feel need to be corrected. I have waited 5 years to get this surgery solution put together so I am quite ready to endure whatever I must!

Thank you for your comments and concern. I will post again as I learn more.

[Mochadelicious]

Hi Cardawnia,
Wow, 11 cm is very big.  It's good to hear it was benign, but boy what a scare that must have been for you.  I'm so glad you were able to get insurance and are finally able to see the doctors you need to see and have tests done that need to be done.  It sounds like you have the right attitude even with all your health issues. Please do keep us posted on how things go.  

[cardawnia]

Thank you Ken, for responding.

I'm still suffering from some 'unknown'.

However, I did have the lipoma removed - the surgeon said it was about 11 cm, but it looked benign. I'm glad to have that resolved.

Since one of my issues was 'no insurance', I am now happy to say that a miracle has happened and through my husband's employer, we FINALLY have affordable insurance. We had insurance 15 years ago, when I had my first back surgery (L5-S1 fusion), but then the insurance company said everything was 'pre-existing' and so refused to pay a dime. At that time it was over $50,000 worth owed and needless to say, left us with a broken bank account besides my broken back. Also because I could no longer work at my job as a cosmetologist, life became quite difficult.

NOW I have an appointment with a cardiologist this week to try and straighten out my bp meds, to start. I think because of the weight I have lost, my dosage needs adjusting, hopefully that's all. Next, I am making an appointment with an internal medicine/pc physician, to give me a general look-over and get my diabetes meds okay-ed too. I'm still seeing the GI doctor, but now we will be able to run a couple other 'expensive' tests.

Then, I am going to find a neurosurgeon and have my neck fixed. C3-C7.

I know I sound like I'm a complete wreck, (and I almost feel that way!) but I am looking at this as just another 'tough season' of Life, and given half a chance, my body WILL get better!

I will post more information as I go through these next things! Thank you again for your time and thoughts. It means a lot to be able to talk with SOMEONE!

[Ken_PA]

Hi, logically it seems that most everything results from the problem in your intestines. (The lipoma is likely just a side issue that's not related to anything.)

Are your eosinophils very high?

If not infection, have they checked for bowel ischemia? How is your INR?

Are your cognitive problems constant, or do they come in spells? If intermittent, you can immediately measure your blood pressure and blood glucose during a spell. Also note what you've eaten (or had nothing at all) before a spell - it could be hypoglycemia, reactive or fasting, with your history.

Have you tried taking pancreatic enzymes?

Lots of other things to consider... but if what you have is typical, they likely would have found it by now. So you probably have something rare, or an atypical case of something more common.

[cardawnia]

Thank you for responding to me. I have been feeling so unwell that I haven't been able to post a reply.

I had surgery for the lipoma - Dr. said it was 11 cm - huge! Fortunately, it was benign - evidently I'm one of those 'blessed' people who grow 'things' - large and fast!

The Drs I have been consulting have tested me for everything they know to test for! My GI Dr said he would refer me to a university for further testing, but unfortunately we cannot afford to even consider that option!

All these tests have returned negative - although some of my numbers are in the extreme high or low range. I had three(!) biopsies in my intestines!

Dr. thinks it is a definite possibility that I am in a constant state of Pancreatitis and my enzyme #'s are on the low side and could be interfering with my ability to break down my food to the point where it can be properly absorbed.

However, I take Tramadol, to lower my pain level and this medicine, for me, has side effects of 'bowel-binding' and also works like coffee, so it 'controls' my diarrhea and gives me some energy - and therefore am using it (with the Dr.'s blessing) to slow down my weight-loss. Because of all the tests, and the surgery, I had to stop all all my 'meds' for several days of the testing and surgery and that's how I discovered the way Tramadol affects me. (Without it I experience overwhelming pain, diarrhea, drenching night sweats, extreme fatigue and nausea!)

The brain ct scan showed I have NOT been having mini-strokes. Thank God for that!

I don't know what my LDH level is at this time.

Thanks for your time and whatever information you can point me to - I really appreciate all help!

[Mochadelicious]

Hello and welcome.  I apologize for the long wait for a response to your post.  I was just wondering if you received news back yet on the scans you had?  I'm actually quite surprised that your doctor hasn't suggested a biopsy of your lump under your arm, especially with all the other symptoms you are presenting with.  How are your LDH levels?