I've got something odd going on, and I'm debating whether I should make an appointment with my MO. Sorry that this is so long, but it's such a weird problem.
I was feeling fine up until Monday afternoon on the 23rd. I was at work, and had done my usual amount of walking and climbed a ladder a few times. These are regular activities for me at work, and I didn't notice anything amiss. I sat down at my desk for an hour or so, and when I got back up again, my quads were tired, heavy, and tight. I wasn't in any pain, though. It reminded me of the time I had taken a diuretic that threw off my electrolytes. Walking was slow, and getting up the stairs was tiring, but I was able to make it around the building despite this.
I was really concerned something was throwing off my electrolytes, so I went to the hospital, where they found nothing wrong with my labs. Since I have osteopenia and take Prolia, they x-rayed my femurs in case I was on the verge of a fracture. They checked for DVT, heart attack, rhabdomyolysis, leg swelling, did some basic bedside neuro tests, and came up with nothing. They sent me home and told me to follow up with my PCP.
The next few days I felt better although my quads were still a little tired, and my knees ached around the kneecaps. I rested over the weekend, and by the time I saw my PCP a week later, I was back to normal, and we thought maybe I had a virus. By Labor Day weekend I was back to normal, and did yard work, washed and waxed my car, and other household stuff without a moment's trouble.
On Thursday the 10th the same thing hit me again at work - fine in the morning, heavy and tight quads in the afternoon. On the afternoon of the 11th, not only where my quads feeling heavy and tight, but my upper leg muscles and glutes ached so bad, I was really worried we'd missed something. So I went back to the ER, where I got many of the same tests again, and still nothing. The PA said this looked to her like something autoimmune, and she suggested polymyositis or polymyalgia rheumatica and told me to go back to my PCP.
Once again I felt better the next day, although not 100%. This past week my quads still got tired pretty easily, I had some muscle tenderness, and my knees ached around the kneecaps again. My right knee hurt so bad one day after work I had to mince my way to the car, but it was better after resting it a few hours.
I called my PCP on Monday, and he has referred me to a neurologist, but I'm looking at least October before I can get in. They haven't even given me an appointment yet. In all this time nobody has said a word about my breast cancer history, although they all are aware of it.
On Thursday I went into the MO's office for my Lupron shot and told the nurse about my symptoms in case my MO would want to know. She said she would pass them on to my MO, but the nurse is also new and I'd never even met her before, so who knows if she even remembered to deliver the message. MO's office never called me back, so either they didn't get the message or they aren't concerned.
The only tingling or numbness I have had is that I have been having trouble this past year with waking up in the night with my first or second toe on my right foot asleep. But it always resolves in a minute if I wiggle my toes or move my foot, so my PCP says it sounds like it is just positional. It only happens when I'm asleep, never when I'm awake. I've also had a lot of trouble with waking up with numb fingers on both hands which my PCP said was carpal tunnel. I've been able to address that by wearing wrist braces to bed. My PCP did some vitamin tests that showed my B-12 was borderline low, which he thought might be related to my new tendency to have my fingers and toes fall asleep at night.
Yesterday I saw a physical therapist. She and I talked about whether this might be cancer recurrence. After taking a history and examining me, she said that seems more inflammatory to her, especially when I described what was happening with my knees. I saw a rheumatologist 30 years ago for fibromyalgia, so the PT recommended I contact the rheumatogy clinic on Monday when they open and see if I can get an appointment there while I'm waiting to hear from the neurologist's office. I was actually feeling pretty good yesterday, but the PT did note that I have some weakness of the quads and hip flexors.
I'm debating whether I should call my MO though, and insist on getting an appointment to get examined and discuss whether this could be cancer recurrence. I'm particularly concerned about the leg weakness being spine related, but I think the PA's at the hospital and my doctor have not been going that direction because I have no back pain, no numbness or tingling during the episodes, and these episodes seem to improve with rest.
I'm very interested in what you ladies think - should I call my MO on Monday and insist on an appointment, or continue down the rheumatology/neurology track?
1.8mm micromet in sentinel node; BRCA negative; chose bmx due to family history; age 43 at diagnosis; Oncotype 15
9/4/2015, IDC, Left, 1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2- (FISH)
10/8/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right
12/17/2015 Whole-breast: Lymph nodes, Chest wall
1/12/2016 Zoladex (goserelin)
6/29/2016 Arimidex (anastrozole)
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