The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 60. Re: coincidence or serious symptoms?
    knxgrl Registered Users
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    Sorry, but I have another question...last night I had a snapping feeling in the back of my head when I first went to bed and it's been hurting pretty much ever since. It gave me a knot on the back of my head - I"m guessing a pinched nerve bc that's the side that I have a shoulder knot/node in. The thing is, at 5 a.m. I woke up with my head hurting and my hands and feet felt "asleep" they were sweaty and kind of numb (like I couldn't really feel it if I ran my fingernails across my palm) and couldn't really squeeze very hard. I almost called 911 bc it scared me. It lasted about half an hour. I went back to sleep and felt ok when I woke up. This afternoon my head and back are bothering me on that side but the lump is pretty well almost gone now; my hands are all sweaty right now again. In your experience, does this seem to coincide with the other symptoms I've been dealing with? When I did my usual online inquiries, adding it to my other symptoms, lyme disease pops up?? I also have more of the acorn sized "puffy" nodes in front of my neck. (I usually have little hard ones surrounded by

     

    Also, by way of update, I had my annual gyn appt yesterday-she is extremely thorough with anything that concerns me so I had her check me out, nodes, stomach, etc. She wanted to do a full panel of everything possible you can test. Of course I said yes. She said she wants to rule out my thyroid (i've had it checked bf but it was fine) as well and her exact words were, "I'm sorry, Valerie, but other than your thyroid, it's really hard NOT to think lymphoma." She's the one person I would trust on any topic medically or otherwise. (She was very upset about my gp and said many women complain that their dr acts like they're hysterical and try to blame everything they don't have an answer to on "women's issues" and hormones, and is getting me names of excellent gp's - yea!)

     

    Anyway, thoughts, comments.......??

    (My onco appt is Monday at noon thank God)

  • 61. Re: coincidence or serious symptoms?
    felursus Registered Users
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    Well, numbness could be a result of nerve impingement, but that is usually unilateral.  If you had an impingement in the spine on one side it would be anticipated that you'd have a problem in the ipsilateral arm/hand, but if the impingement is centrally located you could get bilateral upper extremity problems.  However, if it also affected your legs at the same time and if the problem is caused by an impingement, you would probably have other symptoms as well.  My question is: did BOTH hands and feet go numb?  Did you have any other symptoms - like difficulty peeing?  Have ALL the symptoms resolved completely?

     

    I'm glad that the gynecologist didn't give you the big brush-off.  It's so hard when the labs aren't obviously showing something - at least enough to make an MD ask for other, more rarely performed tests.

     

    As far as Lyme disease goes, I think I mentioned previously in this thread that I had a patient (who was a child-life specialist at the hospital where I used to work) who was sent to me with a diagnosis of "lyme disease".  I treated her for that.  Sometimes Lyme causes arthritic-type symptoms and sometimes it causes neurological symptoms.  My patient had arthritic symptoms, and I treated her for that..  One day I noticed a large, egg-sized swelling over her sternuhe cerm which hadn't been there two days before.  I urged her to go back to her MD - and lo, she was diagnosed with a lymphoma.  I felt absolutely horrible - for her, of course, but also because I had used treatments i would never use on someone with a diagnosis of lymphoma.  Lyme can have very diffuse symptoms.  It is also often misdiagnosed.  I was told by a lyme expert that in the New York area there are only two labs that perform the most accurate .  Here's a link to a Canadian site with some good information.

    http://www.canlyme.com/labtests.html

     

    Good luck with the oncologist appt on Monday - and write in and let us know what happened.

     

    Hugs,

    Karen

  • 62. Re: coincidence or serious symptoms?
    Trey Registered Users
    Currently Being Moderated

    Lyme disease and lymphoma share some of the same symptoms.  It is one of the alternative possibilities when trying to diagnose lymphoma, but for you not as likely, although not impossible.  Lyme disease is also hard to diagnose. 

     

    The snapping neck thing is likely unrelated, and may just be odd timing of an odd injury or event.  But tell the doc, especially about the peripheral neuropathy, along with everything else you have written down as symptoms. 

  • 63. Re: coincidence or serious symptoms?
    pamsouth Registered Users
    Currently Being Moderated

    I can relate to that.  I thought my sweats, and bone pain, headaches, were due to the change of life, I went thru at age 53 year.  I had a CBC in 2002 but my doctor didn’t mention to me that my platelets were over 75,000 high and some of my granulytes were off.  three years later 2005, doc said time for labs, platelets were @ 1million, 2 weeks later at 2 million, white cells not to high 13,000 to 21,000.  Granulytes slightly off.  BMB yep CML PH+.  Of course still having profuse night sweats.  Flew to MD Anderson Tx.  Doc said CML working on my for years.  I even took an early retirement due to the bone pain, headaches, sweats, thinking it was change of life.  Seems everything gets blamed on change of life.  Not happy GP  didn’t mention my CBC being off in 2002, I suppose they either weren’t off enough to say hey maybe we should keep a check on this, or perhaps she let it slide as she didn’t know what to do with it.

     

    PamSouth

  • 64. Re: coincidence or serious symptoms?
    knxgrl Registered Users
    Currently Being Moderated

    Karen,

    Yes, it was both hands and both feet. No problem peeing - that's the first thing I did, that's how I figured out my feet were numb. My head's still hurting but that's pretty much a given most days now, unfortunately and I've felt sore and week today, like I fell down the stairs or like the day after a workout.I don't know how I didn't notice this yesterday, but where they drew blood inside of my elbow is a huge bruise and streaking out from it like veiny sun rays. Very creepy. I look like a heroin addict lol...

     

    I had a strange thought pop into my head the other day...Back in July I got implants and haven't had any problems with them at all. I chose the new solid gel ones that are guaranteed not t leak. However... I found an article put out by the FDA (I typically take the FDA seriously) drawing a possible link between implants and lymphoma. It's a thought and I'll mention it Monday.

  • 65. Re: coincidence or serious symptoms?
    knxgrl Registered Users
    Currently Being Moderated

    Thanks, Trey My list is getting obscenely long lol

  • 66. Re: coincidence or serious symptoms?
    knxgrl Registered Users
    Currently Being Moderated

    Pam,

    I understand that! I can't tell you how many guys have made early menopause comments when I complain about it being too hot or too cold. I get hot flash jokes on a regular basis.

  • 67. Re: coincidence or serious symptoms?
    felursus Registered Users
    Currently Being Moderated

    Pam: She SHOULD have told you to come back for repeat tests in a couple of months. All she had to say was something like: "You've got some unusual numbers, but that can happen for any number of reasons, so come back in 2 months (or whatever period of time she thought advisable) and we'll check them again."  Then when they were still out of whack, she should have referred you to a hematologist (or at least check out whatever else the particular numbers that were "out of whack" could possibly indicate).

    Karen

  • 68. Re: coincidence or serious symptoms?
    felursus Registered Users
    Currently Being Moderated

    Yeah, the bruise thing is horrible.  Some of the phlebotomists are really good, and I don't get a bruise at all, while others leave me looking (well, my arm looking) like I went 3 rounds with Mohammed Ali (when he was young)!  I always go to the MDs with sleeves that cover my elbow just in case!  Be comforted: heroin addicts have "tracks" - a series of marks on their arm.  Nasty.

     

    How long ago did you have the implants?  I think the ones that cause problems are the silicone ones.  Besides, I think it would take longer than 6 months for any implant to cause something like a lymphoma - if that IS your problem.

     

    Well, it's not an impingement that caused your problems.  It could be any one of a number of other problems.  An impingement in your neck that affected your feet would have to be a central cord compression (no matter how transient).  You'd probably have at least transient issues with bowel and bladder - although their innervation is really low (sacral region), and the innervation for the feet is a bit higher (depends on WHERE in the feet - I'm thinking about it as I type).

     

    Make your list of EVERYTHING - no matter whether you think it's related or not.  If you can, try to put the symptoms you've experienced in some kind of chronological order.  Make a list of every medication you've taken, etc.  The more info you bring the better.

     

    Good luck on Monday.

    Hugs,

    Karen

  • 69. Re: coincidence or serious symptoms?
    Trey Registered Users
    Currently Being Moderated

    The implant thing is not as likely a player here.  You would need to  have lumps primarily in nodes near the implants to consider it an issue.  Not very likely. 

  • 70. Re: coincidence or serious symptoms?
    knxgrl Registered Users
    Currently Being Moderated

    Well, I went to the oncologist today. The one node I thought was the biggest issue turned out not to be and the spot in my shoulder that I wasn't even sure was a node turned out to be a group of "shotty nodes"....?? I'm not certain what that means but rest assured I'll investigate momentarily lol... Unlike the last three blood tests I've had, this one came back in under ten minutes. My wbc that had dropped in the past 4 weeks was oddly up a whole number in the past week. Lymphocytes have gone up from 34.4%  to 45.2%. Not sure what that means, either.

     

    Regarding the implants, they took an interest in that fact because their office has diagnosed 3 women with the kind I have with follicular lymphoma. They noted it as something to circle back to in the case of a positive result.

     

    After taking so much blood they had to use both arms ( ) and 2 drs checking me out they have scheduled me for a full body ct and a follow up for results. So more waiting...

  • 71. Re: coincidence or serious symptoms?
    FRAN641 Registered Users
    Currently Being Moderated

    knxgrl, the waiting was always the worst for me since this journey of mine began back in Sept. 2010.  Once we had the answers I could finally take a deep breath and say "ok, now fix it"..LOL

     

    Hope you get your answers soon....take care, fran

  • 72. Re: coincidence or serious symptoms?
    knxgrl Registered Users
    Currently Being Moderated

    exactly!!

  • 73. Re: coincidence or serious symptoms?
    Trey Registered Users
    Currently Being Moderated

    Sounds like a good appointment.  As I have mentioned, diagnosing lymphoma (and/or other things that may look like it) is often a process more than an event.  Good for you that you have taken these steps.  Keep plugging away.

  • 74. Re: coincidence or serious symptoms?
    Trey Registered Users
    Currently Being Moderated

    The "shotty nodes" reference means there is a grouping of lymph nodes enlarged to about the size of buckshot, which is about 1/3 inch each (moderately enlarged). 

     

    See more pics:

    http://www.nhlcyberfamily.org/nodes.htm

     

    The lymphocyte percentages are up but only barely above the upper end of the normal range.  This would be a "watch item". 

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