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Questions about Symptoms

Twobearsshop
Posts: 2
Joined: Sep 2019

Hello! I’m new here and do not have a lymphoma diagnosis, however I have had some very strange symptoms going on and would love some input on your initial symptoms. And even just advice on who to go to for answers one way or another. My mom won’t even hear of it being anything “serious” so I just didn’t know of who else to talk to. 

I’m a 36 year old female with two children, just divorced. Subclinical Hashimoto (Not treated because my tsh is 8 but everything else is normal.) My son was born 2.5 years ago and I had dizziness during the pregnancy along with blackouts and have not been able to get back up to my pre-pregnancy weight since. That’s not really the concerning part since 99% of the dizziness resolved after pregnancy. Brain MRI done at 7 months pregnant and was clear. 

9 weeks ago I woke up in severe pain under both ears, across the backside of my neck (base of skull) and running up the back of my head, sore scalp, tightness in my throat and chest and reflux. Reflux is not something common for me unless I eat chocolate, which I don’t. So my throat was burning, ears, nose etc. My lymph node area on the sides of my neck is not swollen but very sore. My ears randomly feel like they are being burned with bacon grease and have severe pressure/pain under them. Childbirth was not as bad as the war pain. No kidding. I want to rip them off when it flares up. If I eat red grapes (oddly enough) it’s SUPER severe so I avoid them 

Along with that I have what feels like swelling under the left collarbone about an inch down. You cannot see it but for the past three weeks it’s very sore and feels puffy from the inside of that makes sense. And tightens when I take a breath. I’ve lost ten pounds and was already bottom of my weight range 

I had a CT on my brain August 1st to check for TIA and it was clear. Bloodwork in July was normal except for vitamin d low. And have started having strange reactions to food and antibiotics so I know there’s inflammation 

i saw the neurologist last week who says my symptoms aren’t specific to any one thing that he deals with  and so now he wants to “rule” things out. He wants to run a brain MRI and a neck X-ray. I kind of feel the brain MRI isn’t really necessary at this point?

I see the ENT this week on Wednesday. I am hoping to push for some answers/tests but really don’t know what to request? My questions are mostly where do I go and what do I push for? My PCP stays in the room for three minutes and just refers you out. i also have a referral to the GI in a couple of weeks 

This is could be a sudden out of the blue overwhelming case of reflux? Absolutely. But my grandmother had lymphoma, then breast cancer twice. So I’d really like to rule that out as being a cause for the sudden issues. I’m exhausted after 9 weeks of unexplained pain. I’m irritable and just can’t handle every day noises and with two kids, not the most fun mom right now lol 

ShadyGuy
Posts: 428
Joined: Jan 2017

Your symptoms seem very non specific. Swollen lymph nodes from lymphoma are generally not painful. Just an educated guess but I would bet against you having lymphoma. Something is not right but in my non-professional opinion its probably not lymphoma. Kerp after it till you find out what's going on.

Twobearsshop
Posts: 2
Joined: Sep 2019

Thank you. I’m of course hoping not. I feel like such a pain but I’m pushing all of these specialists for answers. Something is definitely not ok

ShadyGuy
Posts: 428
Joined: Jan 2017

Keep it up. We are all our own best advocates. Its ok to bug doctors.

Evarista
Posts: 269
Joined: May 2017

It is my understanding that MRI's and CT's detect different things. On several occasions during the course of my lymphoma treatment and ensuing side-effects, I was referred for an MRI or a CT.  On my most recent episode (in the ER with a neuro workup), I was sent for a CT followed by an MRI.  CT's are easier and less expensive (my impression; please don't quote me), so may be ordered as a first test during workup.

I would get the MRI. I do hope you are able to get it figured out soon.

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