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equivocalsoul 04-05-2013 04:26 PM

Questions about swollen lymph nodes
Ok so here's my basic info. I'm 25, female, have a limb-girdle muscular dystrophy. I have severe low levels of vitamin d which is being treated with 50k IU two times a week. I have thyroid issues that are being set aside until the vitamin d levels get to "normal" limits. They have no idea why my vitamin d is as low as it is, since it's more than me just not getting enough sun.

I have had a head CT and Ultrasound that has confirmed I have swollen lymph nodes in my face/jaw area. Though the ultrasound could only really pinpoint the one on the right side of my cheek (nasolabial lymph node)
Now this one has swollen up a lot this last month and its causing me migranes, pain, and I wake up with the whole right side of my face really swollen. It's constantly swollen all day, but really bad in the mornings like someone punched me in the face.

I never had lymph node issues until about a year ago. I woke up one morning with my right underarm hurt. I noticed a lump. I went to the doctor a few days later with a sore throat and was diagnosed with strep.
I have had strep before and it never affected my lymph nodes. After being on antibiotics for the strep I was in worse pain with my lymph nodes. All of my lymph nodes seemed to get involved. Everywhere hurt, it felt like I could tell you where each node was in my entire body and I couldnt do anything without it hurting.

My doctors put me on corticosteriods which was horrible. I cant fully explain my reaction but they said I "had a bad reaction" to it. Basically it didn't help with the pain and it made me feel like my heart was going to explode/I couldn't breathe/swelling in face and arms/extreme and fast onset of weakness, so I stopped taking it.

It took weeks for my lymph nodes to stop swelling and some still hurt to this day. Mainly in my face/neck/underarm areas. Also, I have these weird reoccurring fevers of about 100F and sometimes night sweats.

My questions:
Can corticosteriods have a weird affect on you if you have lymphoma?
- I ask because with MD this is actually one of very few treatment options to help you get/stay stronger. It generally only works for a short period of time though. When I took it it made me extremely weak. Which is not normal for my disease and corticosteriods, at least according to my neurologist.

Is a needle biopsy a good option?
- I have one on monday because the location of the confirmed lymph node is on my face. I think the doctor wants to avoid surgery on my face, which I appreciate. However, if it isn't reliable what should I do?

Are CBC's always accurate at helping diagnose lymphoma?
- I've had blood work done when my first lymph flare up happened and it was all ok. Now I'm waiting for more results. It's frustrating being told its all normal when you are feeling horrible.

Is there a weird gagging symptom?
- I had about a week long time where no matter what I was doing I'd start gagging. I couldn't eat anything without going into dry heaves. And laughing would get me gagging to that point too. I am better now but I still have times where I just laugh a little too hard, talk to long or loud, eat something, that just sets it off again. My doctor had me do a live Xray of me chewing/drinking/so on and that was all fine. I'm confused as to what this could be but I feel like the lymph nodes on my neck make my throat feel tight.

I feel like doctors treat me as though I'm crazy but I am getting really weak really fast. I know I have a degenerative disease but this is declining much faster then it should.
I know something is wrong and it's not just my MD. Doctors always want to write everything off as it is my disease and I know my disease well, I have been around family with it. They didn't have all the troubles I am having.

I'm scared if it is lymphoma, but at least I'd know what is going on then because I really feel horrible. Thanks for any input.

Upatnight 04-05-2013 06:19 PM

Re: Questions about swollen lymph nodes
Good Evening. I am a lay person. I am not doctor, but I can tell you... Only an excisional biopsy can definitively rule out lymphoma. CBCs in lymphoma patients are often normal so they are not really a lymphoma tool. I have been doing alot of reading on lymphoma and have not come across gag reflex as a symptom. I too am dealing with the needle biopsy option because of the location of my nodes. Go with the needle without hesitation. If it finds nothong and you are still concerned, you can always have the surgery. I hope others will post for you. In situations like yours, I know someone can relate and I hope they share. HUGS!

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