Discussions By Condition: I cannot get a diagnosis.

Please your help is requested

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: anomalia
  • June 26, 2009
  • 10:02 PM

A few days ago, I woke feeling fine, danced some the day before without discomfort and even a bit in the morning (my normal exercise). By midday yesterday, I began to feel very odd overall, and clammy though no fever. My thigh and around my hip first began to feel intense pain and within minutes, the pain involved my entire thigh, lower leg, and foot. It had the feeling of being very swollen, but swelling was not obvious except for some in the 'normal' areas of pain before.
I could not stand or walk without extreme pain. If I stood on my right leg and no pressure on my left leg at all I had some relief. By the time I tried to sleep, my lower abdomen was also involved and I required some pain medication
to get any rest. Morning came after 7 hours. I felt very good and slowly got up. As soon as I stood I was aware of pain and within the few minutes of walking to use the bath and dress, I could barely stand. When it was necessary to stand I find my toes curling under to try to relieve some pressure and pain to the bottom of my foot.
This evening, the overall pain is about 1/2 of what if was last night in the upper leg, but still much in the lower leg and very intense in my foot, particularly the ball. Standing and walking remains very difficult and increases the pain. I have asked several doctors about this, some have felt the lumps of pain, prescribed pain meds and all have said they did not know what it was. No follow-up offered. I have been dealing with it as best I am able, ice packs, pain med and am lucky I have only experienced this a few times a year to maybe once a month.
But the experience of yesterday into today involving the entire leg at once and so overwhelmingly intense has me stymied as to how to deal in the future. Your input and insight will be greatly appreciated. Thank you.

To update: a couple days later: My left leg feels like it has a vibration as well as a 'pins and needles' feeling. My left foot has a numb feeling as well as a deep throb with pain on pressure such as trying to stand, as well as the other symptoms. My left hip remains very uncomfortable and the pressure of standing increases this as does sitting or lying. And though my left is not my dominate leg, I was surprised to find out that my left calf is over 2 inches larger than my right calf. As I am tall and lean, this may be more obvious.

I had first IVIG (infusion) 8 days ago. I have CLL (WBC 160k, Ig was 200 below). I'm 61. Am active, usually dance, walk, light weights, stretching, and was volunteering regularly. I do not have a fever, but feel quite odd and not myself.

HX: A few years ago, I first noticed was a very hot pain on the top of my thigh. Within a day or so, an area swelled to a soft mass large enough I could not cover it with my open hand. The sharp, throbbing, hot pain was so intense I could barely speak. I basically sat and sweat with pain. An ice pack seemed to heat up quickly when applied. The worst of the pain and swelling lasted 24 or more hours. By the next day, the pain was so much less and the swelling slowly went down in another day or so.
Then within a week or so, it seemed to migrate or turn up again but this time in my lower leg, 5 inches below my knee (front, toward the inside) experienced this same type of pain experience to a degree. The swelling area was smaller and much harder and the pain not quite as intense. It too lessened and went away in a few days. This was followed by smaller soft areas in inside ankle area, top of my foot near the large toe. Happily these serious of events were far and few between, but none the less painful when they did come.
On occasion the pain would stay mostly on the thigh and little notice below. I experienced a similar pain in my upper right arm a couple times, but not for a long time. When I feel good, I feel good and am able to dance, walk distances, hike, etc. Currently I can hardly walk to the kitchen or bath.

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2 Replies:

  • Your problem seems very complicated and is probably best handled by your oncologist who diagnosed and is treating you for CLL. Your assumption that your long-term problem may be related to lymphatic obstruction certainly seems valid. Lymphadenopathy (enlargement of lymph nodes) and massive lymphadenopathy with resultant lymphedema (accumulation of fluid) in your leg can certainly occur in CLL. With your recent problem with your swollen calf and pain, DVT (deep venous thrombosis) is a possibility, although DVT is rare in CLL. Maybe some other members of the forum can shed more light. Please consult your oncologist for resolution of your problem.
    m3dh31p 69 Replies Flag this Response
  • Thank you very much for your time to reply.I have asked GP, PCP and a couple oncologists/hematologists.I have been able to see them with smaller isolated obvious symptoms, but the hematologist has repeatedly claimed he does not feel this is not related to CLL, or he has no idea what it is the cause, and that he hasn't seen this before.I seem to be stuck in a loop of referrals, and back and forth. One offered they could do a needle biopsy but if it was cancer this could open it to spread through my body (comforting), yet another said he could but didn't think it would tell him anything. Yet when a doctor observed some symptoms at at the onset, he ordered an ultrasound, but though for some unknown reason the ultrasound was upgraded at the hospital to a CT with contrast dye.I was then informed, the CT failed to see the soft fluid areas. I was later told an ultrasound could have possibly shown the soft areas in question, but that was not done, I was pretty frustrated. I still got the bill for the CT. I am befuddled to say the least.I have tried to journal the details as the swelling situation arise, and have even done diagrams from where it seems to begin and travel; still I get the same replies.This last situation is the first time so many areas have come on all at once with such overall intense pain lasted this long. Now, several days later, though the severity has diminished tremendously, within only minutes of walking or standing I am back to being one-legged with same symptoms as stated in last update.When I called the local GP's office earlier in the week, I was informed he is currently out of town. A CBC was order yesterday and I have an appointment to him on Monday.I am learning that one of the really sad parts of having CLL is that the patient offen gets in a loop of tests and referrals, or one will say all problems (after Dx) are probably related to CLL and other doctors will say not or they don't know. This, on so many levels, it not a pleasant experience. (No I am not a smoker, but feel I need to say so as it also seem many assume so.)Thank you again for your input. The only reason I even knew to suggest lymphatic obstruction is I started a search of symptoms to see if anyone else had this or if any one else could offer any suggestions, insights or experience.I have had numerous abdominal surgeries 30 years ago for an accident and illness, and this has left a mass of mangled scar tissue, particularly in the lower left area. The doctors know this, but again are slow to find or admit any connection or involvement. I will mention here as maybe someone is able to see the forest for the trees or outside of this box.With appreciation.
    anomalia 2 Replies Flag this Response
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