Hi there...i need to get to the bottom of my chronic pain issue so I have come here for your opinion. Please help. I have been in chronic pain with Neck pain, radicular pain in arms (mostly right), migraines (many years, related to menstrual cycle) and more. Here is a quick history:
12/01 and 4/08 - lost two pg at 19 and 16 wks respectively IUFD, dx: Antiphospholipid Antibody Syndrome
6/07 neurologist re-diagnosed migraine disorder (was originally dx cluster headaches) - put on topamax 150 mg /day
10/07 chronic pain in neck, could barely move, headaches worsened -sent to pt (2 mos, no change)
10/07 - 3/08 Weight loss, 30 lbs (topamax?)
12/07 diag 4mm pituitary adenoma (can still express breast milk - last child born 8/03 with help of heparin and baby asprin during pg) NOT a prolactinoma as prolactin levls were normal (10)
01/08 diag via mammogram and ultrasound - cysts in breasts 2 on right meas 7 and 8 mm, 8 on left meas from 2mm - 8 mm
01/08 found lump in neck, and neck pain, upper back pain and now upper chest pain persisting - radicular pain down arms too - reg md put me on 2 rounds of antibiotics re: enlarged lymph node
Hematologist repeated blood tests - ANA 1:320 homogeneous pattern (slightly increased iron levels, but in past anemic)
4/08 Neck lump growing - pain persists - had CT scan and subsequent MRI of cervical spine - 3 mildly bulging discs - one contacting cord but to the LEFT side / not right
6/08 MD's disagree on where pain is coming from - hematologist says not from swollen lymph node, Neuro and reg md say not from cervical spondylosis
8/08 sought surgical opinion of lymph node - MRI with and w/o contrast dye shows lymphadenopathy in cervical spine and 12mmx7mmx5mm lymph node on right side of neck adjacent to sterncleiomastoid muscle - referred to hematology/oncology at lahey, MA
9/08 saw Lahey MD (hema/onc) he is not very concerned with lymphadenopathy and wont remove swollen node until it reaches 15mm (but suggested CT scan of chest and abdomen to rule out additional swollen nodes)
So, you can see....I feel like a yoyo...the hematologist/oncologist at lahey palpitated the lymph node and doesn't feel that it is cancerous...but must I go through another CT scan? As it is I have to follow up with breast ultrasounds every three months and no one wants to biopsy anything. I am seriously looking to rule out the worst case scenerio...I am so fed up with the "let's see what happens in 3 months" report. I don't have my most recent bloodwork back yet but I don't want to spin my wheels either...could this pain be simply something like Fibromyalgia..my aunt has that. I have a cousin with a blood disorder too....Haematomachrosis and another cousin who had a 16mm node removed from her neck, benign. This pain is debilitating and I am losing sleep and I am VERY fatigued. I am still in PT 2x per week but the therapist has foregone some modalities (like traction) due to the increased growth of the lymph node..In the meantime I feel like my head is going to roll off my neck. The pain in the upper part of my chest and upper back bring on awful spasms and radiate down my arms. I know this is a lot but I need direction, relief and some answers. Should I be getting tested for something else? What is everyone missing? Can you help?
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