Starting To Feel Crazy

[KarissaC]

Hello all,
I apologize for the length of this...

Last September, out of the blue, I started feeling very fatigued, and I noticed a lot of swollen lymph glands in my neck. I also started experiencing severe pain in my leg bones that felt like they where on fire. It was excruciating.
I saw my doctor, and they did blood tests, my WBC was low, and they did an ultrasound which showed my lymph nodes where very swollen. My doctor didn't do anything, or seemed concern. After trying to get help from that doctor for 6 months, I gave up, and switched clinics. My new doctor diagnosed me with and UNDERACTIVE thyroid. Which seemed really strange because I hadn't gained any of the weight I had lost.
Anyways, for a few months after taking thyroid medicine I started to feel better, and get a bit more energy.

Well the very end of August, my pain started again, and I've been experiencing new symptoms. I began to loose more weight, you can now see my spine and ribs. My spleen is swollen, my liver enzymes are elevated, I'm experiencing night sweats almost every night, and I'm SO tired I can hardly speak sometimes. I'm also bruising really easily, and I now have swollen lymph nodes in my armpits and groin.
He preformed more tests, and my lymphocytes are on the high side of normal, almost at the limit, but my RBC and platelets are on the low end of normal. He had a CT with contrast done on my lymph nodes in my neck, but that came back looking normal. Now I'm being referred to and ENT. What do ENT's do? Should I be worried? Am I crazy?

I'm just getting so frustrated that after a year I don't know whats wrong. I should be better, but i'm getting worse. I am a 22 year old female.

Thanks!

[spoilher101]

hI chris. I tried to send u message, but it to long, & cant figure out how to getr it to send to u? Now, i must run to brain support meeting. I am mad at myself, cas i wasted 4 hours to compose, & it says to long! So, hpoefully. i can figure out it after my brain support meeting. It is very important that i get the message to u, cas i ws thinkin of goin to HBOT center in CLEARWATER. thanks. Steve

[spoilher101]

Hi Ken. The agency is called ,dept of aging. They r suppose to help find , & set up people with ins., & doctors. In r state, even though it is a govt. org., the state runs it. It is messed up, cas it actually is 2 diff. org.  1 is run by medicare, that branches out to each state. In r area, it , or if u have a problem, ur better off to call, & it actually involves 3 states. AOC offices., which medicare branches out. If i wanted to file a complaint with medicare, & AOC division, they would have me go then to the dept. of aging for help, but they will not help me. Very confusing! I might have to hire a lawyer, if i get enough nerve. I posted a lot in stroke community, after the state covered up my stroke, cas no one told me it was a stroke, until the eye specialist "moved on", & called me. I picked up my records, & it confirmed everything. It is so hard to believe that a hosp. would actually try to keep me silent, by putting down DNR! Then change it, after they realized i flew my brother up same day.(thought i came alone) If u have time go to stroke area, & look under swelling, & u will see exactly what  neglect, & abuse i have been through. Spent 3 years fighting for my rights. disabilities of VT. is a govt. agency, BUT, to file u go through the local branch in VT. That is another long story, BUT, IS WHY I CANT GET HELP ANYWHERE! If i didnt end up with dimentia, i could figure out to call the goverment itself. Actually thats who is my only alligh. (spelled that wrong)  OBTW,  the DNR, was not my idea! The state dept. of aging knows about it, plus is/or was a friend, but she is worried for herself(job)  I have to leave state, but i have 2 apt. houses, & i , or it is just to hard to deal with. Thank u. Steve.

[Ken_PA]

Hi, Steve. I hope that you got the DNT removed from your records.

With regard to records, I was thinking of that situation a few years ago when a radiologist in Hong Kong was supposedly writing something like 90 reports per hour, even though he was also sleeping on the job. It turned out that he was just posting the same report in for reach scan, over and over.

Isn't there any forum here for advice on getting help from agencies for getting to your doctor visits? Sorry, but I don't really know anything about that.

[spoilher101]

Hi Ken.
Just wanted to comment/advise, It does not happen to often, but in my case, i have had doctors that cover-up for other doctors, & some that "move on". According to medicare, it is somewhat common, when this happens(like with me) During my last attack(they called it a stroke, but never told me?, But in my take home paper work, it had a folder, & test for patients, test for PHQ-9 testing for stroke victoms) Luckily i had flown my brother up from Calf., which they did not know. ALSO, in the take home paper-work it said DNR! In the ER, after 3 cat scans, & a cath, I am begging for help. I just want oxygen, what r u doing to me? They laugh, how do u like this?!!! What r u doing?(4 ER doctors) Finally they go we will give u 2 liters. I went there to see my neurolist to begin with. (i am trying to write as fast as possible cas i have diff. doctors appointment , later, & i need to call a person to help me) Anyway, i was having these brain attacks every 4-5 hours, &* fortunately i had some suboxine from a doctor out of state, because i could not get help in my state(longg story!!!). Well they thange the DNR, TO RECINDERED. after they realized i had my brother with me.(managed to fly him up the same day, 3000 miles away) YA, I know this sounds to absurd to believe!). 1 problem, i woke up, next morning. My neurolist never showed up, unless he walked in on them in the ER, which i doubt? Anyway i had an appointment to see him, in about 4 hours before the ER incident. Woke up in mental ward! Where they proceeded to give me ABILIFY!(I am a heart, & stroke victom!)  Which makes things worse, swelling(3 years of it, NO ONE would help me. The ones that would help me, would tell me, 'why r they doing this to u?!!!, I cant help you! I am sorry." It is like they dint want to get involved like my last neurolist, that passed on. ) He, i have all my records, was worried about me having a ruptured anurism, form toxic fumes, & carbon mponode poisoning. He did get the state involved, state got OSHA, involved. OSHA, closed the plant down.(over 10, 000 employees, in a small town) I have the paperwork from my state, stamped , state of VT.) sINCE THEN, I DEVELOPED CATERACTS, GLACOMA SUSPECT, SWELLING.(woops sorry about the caps)  OK, 3 doctors have moved on. Last ws my eye specialist, & was nice enough to call me up! Even though he was covering up for a hosp, next state over. Told me it ws my new eye glasses! Thats wen i went for 2nd opinion, BUT, i did not show the new doctor paperwork from the hosp, & BANG, just what i thought, Cateracts, glacoma, She also told me i would have to take med. rest of my life for enlarged prostate. Well, at least 1st, eye specialist, left me paperwork, & confirmed what everyone ws hiding, Unspecified cerbral artery occlusion with cerebral infaraction! Not a hospital in this state, or NH, will help me. Even while having these attackes, my NY. doctor, called me, & asked me something like where i wanted to die? I knew state of VT. had talked to him? He is the only recent doctor, that told me to have my cardiolist look at my swelling. Such long story, so, I will get to point, THAT IT IS POSSIBLE, that something could had been alterred  in karissaC report?, BUT, i doubt it. OK, I will rap up my ending. WENT TO the Mayo clinic for help. My PC, called them, & broke AOC. confidential records., & told them, nothing is wrong with me! There thay proceeded to inject me with 3 shots of hapoperoldol 5 MG! STILL woke up! They sent me via ambulance, 300 miles away to another hosp! I living off of oxigen, & pain meds(high, high dose, & a little bit of alcohol to get me motivated/happy/ nerve to still seek help. My , now, vascular dimentia, is progressing so much, it is hard to use a computor, let alone open an envelope. I have to go, cas, 2 reasons, find some support for my doctors visit, & if i spend over 2 hours on computor my vision starts to go, & then swelling i can feel in my ankles.
I know this sounds far fetched! BUT, I have all my records , mostly, now, but uncapable of organizing them. I do respect the last eye doctor for leaving the state, cas he left me my paperwork, just as what my good neurolist ws worried about, 12 years ago.(i have had a lot of other symptom in past, including a few heart attacks, 1st, with 99 percent blockage. I got to go, & get ready. 1 last thing, dont do med, & my lefy eye looks like when my baby ws born floppy, with brain damage both sides, 1 eye shut.(complete recovery) another story!
I am praying someone cares about me, & not so much their, "code of ethnics" I am so sorry . I cant get social help, even mental health. I called state asking for support group. They mite get back with me?  ANY IDEAS? I feel stupid, afraid to ask for help, i cant get another doctor! Thank u, got to go, & ask cleaning woman to see if she will go with me to my new heart doctor, BUT he works at 1 of the hosp, that my ex-sphichietrist ordered a shot of something, that immediately got me ill, & my groin was on fire-like. So not sure what will happen. Thank everyone on this site!, & hope to return! Steve

[Ken_PA]

That's puzzling since it's saying that every single thing in the neck is normal - not even any enlarged nodes.

If the neck nodes were swollen during the scan, then maybe a records mixup?

Otherwise, if they'd gone down on their own only to appear in other areas, then cancer doesn't behave like that. If the ENT doesn't know what's happening, then maybe you can see an Immunologist some day. Good luck.

[KarissaC]

Thank you for your information.
Here are my results.

Lymphocytes Percent    15.1 - 41.8 %   my value: 39.8

AST                             14 - 36 U/L   my value:  42

RBC                        3.80 - 5.12 M/uL   my value: 3.98

EXAM: CT SOFT TISSUE NECK WITH IV CONTRAST

INDICATIONS: Bilateral lymph node swelling.

COMPARISON: None.

PROCEDURE: 83 contiguous transaxial 3 mm thick images from
the skull base to the carina were obtained. 125 cc ml of
Optiray 350 was administered with no adverse reaction.
Sagittal and coronal reconstructions were obtained.

FINDINGS:

Bilateral skin markers have been placed on axial image 30.
The skin markers are at the level of the inferior margin of
the bilateral submandibular glands. There is no underlying
lymphadenopathy present. The bilateral submandibular glands
are homogeneous and normal in size. No evidence for mass or
cyst.
Pharyngeal Mucosal space: No evidence for mass or
lymphadenopathy.
Parapharyngeal space: Negative.
Oral cavity/sublingual/submandibular spaces: No evidence
for mass or lymphadenopathy.
Larynx/hypopharynx: Negative.
Masticator/Parotid space: No evidence for mass or
lymphadenopathy.
Carotid space: No evidence for mass or lymphadenopathy.
Retropharyngeal / Perivertebral Space: No evidence for mass
or lymphadenopathy.
Visceral space including the thyroid: No evidence for mass
or lymphadenopathy.
Upper lung zones on lung windows: Negative.
Vascular: No evidence for stenosis or occlusive disease.

Impression
IMPRESSION:

1. Normal study. No evidence for soft tissue mass or
lymphadenopathy.

[Ken_PA]

Hi Karissa, I see that you posted here while I was writing my reply to Chris.

Can you post the reports from your two scans?

[Ken_PA]

Hi, Chris. Nice to see you commenting here. I'd look at it this way (quoting Karissa throughout):

The "excruciating" bone pain was among the very first symptoms (in Sept 2012), so that's unlikely to be secondary involvement of a nodal lymphoma because metastasis is not typically an early process. There is such a thing as primary bone lymphoma, but that almost certainly wouldn't start suddenly in both legs together.

The bone pain seems very unlikely to be just a coincidence, so whatever caused the bone pain probably caused the enlarged nodes - and not vice versa.

With severe bone pain, Multiple Myeloma always comes to mind. Considering that a metabolic panel was likely done ("they did blood tests") and no mention of hypercalcemia is here, then that tends against MM. Even so, it's possible that testing for paraproteins was nevertheless done, and came up negative.

Early on, the neck sono was done. I'll *assume* that the architecture was looked at and was deemed to be normal. That would tend to rule out cancer, especially if a fatty hilum was present. That would explain why the doc didn't "seem concerned". (It's possible to scan a node when the cancer was just beginning, and so the hilum would still be present - but that wouldn't be consistent with the rapid swelling in multiple nodes which, if it was lymphoma, would indicate an aggressive lymphoma.)

[Karissa, if you are still reading this thread, can you post the reports from your scans?]

Disappearance of the bone pain (and possibly some reduction in node swelling?) and then re-appearance ("the very end of August, my pain started again") seems inconsistent with any bone cancer.

But acceleration of weight loss, new enlargement in spleen, newly swollen nodes at distant sites, and appearance of B-symptoms would be consistent with lymphoma, especially with a transformation. That's probably why a CT was done at that time; but it "came back looking normal", so once again I'd assume that means normal architecture. Also, if there really were now an agressive lymphoma, then you'd normally expect marrow involvement and therefore the resulting cell counts going below normal and dropping.

Also, my guess is that low normal RBCs would be unlikely to cause her severe tiredness. Easy bruising seems very unlikely from low normal platelets (which would be ~>150). I've even seen and heard from people with counts <50 (and even <7) without easing bruising, and no spontaneous bleeding.  So maybe possibly there's a clotting disorder involved ("my liver enzymes are elevated").

My guess is that the vast majority of docs would think that the new symptoms aren't sufficient to order a biopsy - if the scans looked at architecture and found architecture to be normal. If the scans didn't show normal arcitecture (because they only looked at size for some reason), then getting a sono to look at the architecture would be a reasonable step.

[KarissaC]

Chris,
Thank you so much for taking the time to not only read my post, but to offer useful advice.

I see the ENT this Tuesday, and I will push for a biopsy. I wont rest easy until I have one done. It is also reassuring that if it is Hodgkin's, I'll have a decent prognosis.

I figure the way I've been feeling, I can face anything. If they figure out what's wrong with me, than I can make steps to get better, but if they never find out what's wrong and I feel this way forever- that's what scares me.

Thank you again,
Karissa

[LeFleur_]

Sorry I forgot to mention one more thing regarding Hodgkin's. Drinking alcohol tends to cause the swollen lymph nodes to become painful. If you've noticed this and feel like it's unrelated, you may want to mention that as well.

Chris

[LeFleur_]

Karissa,

I really don't think you're crazy for being concerned. I read through these boards from time to time, but I rarely post anything unless I see multiple red flags. That being said, I think you should request a lymph node biopsy (if you haven't already). When I read through your post a few times, my gut feeling was leaning towards Hodgkin lymphoma. It has a bimodal age distribution, meaning it is most common in two sets of age groups, 20's and > 70 y/o. Weight loss, night sweats, and bone pain also led me down that road. An enlarged spleen can surely be a sign of some sort of lymphoma as well, fatigue points to the lower red cells, easily bruising is likely due to the low platelets. Being that multiple cell lines are affected (platelets, red cells, white cells) and your spleen is enlarged, you should push to have more tests done to rule out or rule in lymphoma. Go to your with those facts about Hodgkin's and hopefully it will at least cause enough concern for him to rule it out to cover his own back. I'd like to add that I am a medical student, so while I'm not a physician, I didn't go look this information up on google. Also, Hodgkin's has a MUCH better overall prognosis than the Non-Hodgkin's lymphomas.

I hope I was some help to you,

Chris