How can I get diagnosed?

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rhondaw507
rhondaw507 Member Posts: 2
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Beginning Labor Day weekend, I had pain in my lymph nodes under left arm. Within the next couple of days I ended up with a burning sensation under both my arms, and a sunburn feeling on my chest, upper back and upper arms. I then had tingling in upper thighs, and began waking in the night with hot flashes (no sweating). The soles of my feet began tingling, and had weakness in hands, and the burning moved up into the back of my neck. This lasted for about 5 weeks or so, then the burning gradually went away and it is intermittent now.

However, for about the last month I have had very narrow stools and alternate between extreme constipation and diarrhea. I have recently begun having pain in my left side, and a bloated feeling. Beginning this past April, my vitamin D levels were extremely low, and I am anemic. My WBC is up, and I have consistently had a temp of between 97 and 98.6. Thyroid test came back normal.

My doctor is hung up on the tingling, and has ordered nerve testing (normal) and sent me to a neurologist. This doesn't feel neurological, and I can't help but remember a friend of mine who had Burkitt's lymphoma. Her symptoms were constipation and low temperature.

When I complained of my digestive issues, the doc's response was to eat more fiber and come back in a week. Considering how strange my gut feels, this isn't what I needed to hear.

Rheumatologists and oncologists that I have called want a referral, which won't be happening until I have exhausted all possible remedies with the neurologist. (The neurologist said he didn't know why I was sent to him since I seemed normal, but he will do an MRI to see if he missed anything.) The doctor doesn't want to do a CT scan or colonoscopy because I haven't seen blood in my stools.

This is so frustrating. I may not have lymphoma, but HOW DO I GET DIAGNOSED?

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  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
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    My opinion...
    Hi Rhonda,
    My opinion is that your primary care physcian needs to make the referal for you to get a Colonoscopy..not today, but "yesterday"! Put aside the multitude of other problems you are having..(those alone are red flags galore)..and tell your PCP that you insist on having this done. If you end up not having anything wrong in your colon, then at least you can eliminate that from everything else you are experiencing. You don't have to see blood in your stools to get one done...it's a good thing to do even when your not having any problems, which you obviously are. Early detection is vital when it involves the colon. You can call your insurance company and tell them whats going on and they may send the authorization for the Colonoscopy directly to your doctor without his approval...couldn't hurt to try. It's no skin off of your PCP's nose one way or the other,so go over his head if need be, but don't ignore this any longer...PLEASE! Others in the group will surely get back to you on this. I'm on the West Coast, so it's still fairly early here, but others alot smarter than me live on the East coast, or in between, and are probably in bed. I'm the resident "night owl" so I'm usually up until 1:00 or 2:00. Let us know what you find out or do....sounds like you have some major issues to get solved here. Take care and I'll keep positive good thoughts for you.
    Love...Sue (60yrs young) (FNHL-2-3A-6/10)
    Follicular Non-Hodgkins Lymphoma Grade 2..Stage 3...Type A..Diagnosed June,2010.
  • rhondaw507
    rhondaw507 Member Posts: 2
    #3
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    allmost60 said:

    My opinion...
    Hi Rhonda,
    My opinion is that your primary care physcian needs to make the referal for you to get a Colonoscopy..not today, but "yesterday"! Put aside the multitude of other problems you are having..(those alone are red flags galore)..and tell your PCP that you insist on having this done. If you end up not having anything wrong in your colon, then at least you can eliminate that from everything else you are experiencing. You don't have to see blood in your stools to get one done...it's a good thing to do even when your not having any problems, which you obviously are. Early detection is vital when it involves the colon. You can call your insurance company and tell them whats going on and they may send the authorization for the Colonoscopy directly to your doctor without his approval...couldn't hurt to try. It's no skin off of your PCP's nose one way or the other,so go over his head if need be, but don't ignore this any longer...PLEASE! Others in the group will surely get back to you on this. I'm on the West Coast, so it's still fairly early here, but others alot smarter than me live on the East coast, or in between, and are probably in bed. I'm the resident "night owl" so I'm usually up until 1:00 or 2:00. Let us know what you find out or do....sounds like you have some major issues to get solved here. Take care and I'll keep positive good thoughts for you.
    Love...Sue (60yrs young) (FNHL-2-3A-6/10)
    Follicular Non-Hodgkins Lymphoma Grade 2..Stage 3...Type A..Diagnosed June,2010.

    Update on progress and symptoms-colonoscopy tomorrow
    At this point, I am still having the periodic burning under my arms and back of my neck, and pain in the front of my left hip. My skin on my back and neck seems a little more sensitive, and my balance appears to be worse.
    My brain and neck MRI came back normal. I also went to OB-GYN to have a breast exam to make sure no lumps I didn't find and he said all looks ok.
    I have a colonoscopy set for tomorrow. We'll see what happens I guess.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #4
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    rhondaw507 said:

    Update on progress and symptoms-colonoscopy tomorrow
    At this point, I am still having the periodic burning under my arms and back of my neck, and pain in the front of my left hip. My skin on my back and neck seems a little more sensitive, and my balance appears to be worse.
    My brain and neck MRI came back normal. I also went to OB-GYN to have a breast exam to make sure no lumps I didn't find and he said all looks ok.
    I have a colonoscopy set for tomorrow. We'll see what happens I guess.

    Great!
    So glad you are getting the Colonoscopy done! Please share back when you get the results. I'll keep you in my prayers and will be thinking good positive thoughts.
    Love Sue...(FNHL-2-3A-6/10)
  • kadee2
    kadee2 Member Posts: 2
    #5
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    rhondaw507 said:

    Update on progress and symptoms-colonoscopy tomorrow
    At this point, I am still having the periodic burning under my arms and back of my neck, and pain in the front of my left hip. My skin on my back and neck seems a little more sensitive, and my balance appears to be worse.
    My brain and neck MRI came back normal. I also went to OB-GYN to have a breast exam to make sure no lumps I didn't find and he said all looks ok.
    I have a colonoscopy set for tomorrow. We'll see what happens I guess.

    Colonoscop
    Hi there ! Your stomach symptoms sounds much like mine had. I hope this isn't too late but you may want to ask your Doc about biopsies during your procedure to check for Celiac Disease!
    I was originally diagnosed with this, but after numerous scopes, tests, surgery, it turns out I don't have it!
    You would be amased at the number of people who have Celiac and don't know it. It's predicted to be about 1 in every 133 people have it the US. It is an intolerance/allergy to wheat, barley, malt, hops, etc. People with Celiac has experienced over 100 different symptoms. I think it wouldn't hurt to check out! Mayo Clinic has good info. about it, as does several websites, if google Celiac Sprue Disease. I hope this helps! Good luck!

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