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Old 05-15-2012, 08:13 PM   #1
Join Date: May 2012
Location: lexington, ky us
Posts: 6
alw0228 HB User
undiagnosed! swollen lymph nodes and tons more!

Hi. I am a 29 year old female. I've been sick for about the last 2 months and getting worse. It started with feeling some small swollen lymph nodes on my neck. I went to the doc and they gave me a strep test which was negative but was sent home with antibiotics anyway which had no effect. A few days later I felt like there was something stuck in my throat. I went to the doctor for that and nothing was found. Then came the difficulty having a bowel movement. I couldn't go even with laxatives. I had a colonoscopy and egt done. Again nothing. The feeling of something in my throat went away but only to be replaced with more swollen lymphnodes. I had a ct scan done which showed the nodes but the doc was unconcerned cuz they're not big enough. I then bagan having difficulty swollowing so I had the scope in my nose to look at my throat. Again nothing. Then came the feeling of burning in my back with tingling going all the way down my back and into my legs with my hands and feet feeling numb. It seems like I get a new symptom everyday and the doctors think I'm crazy and want to shove anxiety pills down my throat. Here are all my symptoms as of right now.
Swollen lymph nodes
Difficulty swallowing
popping in throat when swallowing
popping joints
soarness in lymphnodes throughout body
popping feeling in chest and under ribs
heart palipations
muscle pain all over
tingling and numbness
burning feeling in back
jaw pain
shortness of breath
pains that seem to come and go in various areas
Please, if anyone has these symptoms like me let me know. I'm at a loss and I've even had to switch doctors because my doctor litterally said she couldn't help me. She thought I was crazy. I get worse everyday and I don't know what to do. I'm so tired of going to the doctor but I know I have to. Any help would be appreciated.

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Old 05-17-2012, 07:41 AM   #2
Join Date: Mar 2012
Location: Pulaski WI USA
Posts: 7
katfer HB User
Re: undiagnosed! swollen lymph nodes and tons more!

Have you had any blood work done yet? If not, that's where you need to begin. Find another Doctor, this can be very difficult. Be persistant I went to a internal medicine doc that helped get me in the right direction. A teaching hospital is also great place to go as they will keep investigating til they find the answer. Have you ever had lyme disease testing? Lupus testing? Hang in there, your not alone, turns out there are many people like us searching for answers. Keep me informed.

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Old 05-18-2012, 10:09 AM   #3
Join Date: May 2012
Location: lexington, ky us
Posts: 6
alw0228 HB User
Re: undiagnosed! swollen lymph nodes and tons more!

Yes. I've had a lot of blood work done. Everything has come back normal but I've noticed that my counts for my white and red blood cell counts go up every time I've had testing done as well as my lymphocyte count. Idk if this is normal or not. They haven't gone above normal. I haven't been tested for lyme or Lupus. I've got an appointment with a neurologist next week but I am considering seeing an internal medecine specialist too. I'm so frustrated and scared. I think the worst part is not knowing what's wrong and the fact that the doctors seem to think there is nothing wrong at all when I know there is. Scared to death it could be some kind of cancer and seems like no one cares or understands. Thank you for replying. Talking to people in my shoes makes me feel a little better.

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katfer (05-20-2012)
Old 05-20-2012, 05:26 AM   #4
Join Date: Mar 2012
Location: Pulaski WI USA
Posts: 7
katfer HB User
Smile Re: undiagnosed! swollen lymph nodes and tons more!

I know what you mean and how your feeling. I have been dealing with this for 10 yrs now and I simply wonder how could all these drs not see what I'm feeling. But I know my Internal medicine dr has cried with me as she relates and is genuinly concerned. I have the same relationship with my lyme specialist. You need to be your activist! Don't give up until you are satisfied. That's what keeps me going. I need to know as I have grown children and they are now starting their own families. I don't want this to go on another generation, we have a right to know what we are dealing with.
I have found relief of pain with accupuncture and massage therapy. This is keeping my lymphatic system moving. Nutrician is vital, plenty of water. Cleanse your kidneys and liver with real lemon juice in water (one a day). It has been a God sent for me. Nature is best. Good luck in your journey.
Take care.

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Old 05-30-2012, 02:32 AM   #5
Join Date: Aug 2003
Location: Pittsburgh
Posts: 69
BchGrl HB User
Re: undiagnosed! swollen lymph nodes and tons more!

Keep changing docs if you have to and ask for a possible PET scan. You have to find a doc that has seen all your symptoms before or he won't be able to peice it together.
Contact "Mystery Diagnosis", they may be able to help.
Follicular Non Hodgkins (fNHL)
Stage 4 (transformation occured)
Age 36

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Old 11-06-2012, 11:50 PM   #6
Junior Member
Join Date: Jul 2009
Posts: 49
August59 HB User
Re: undiagnosed! swollen lymph nodes and tons more!

If you can find a specialist that takes rare cases because the only way you can get a diagnosis is through exclusion of other diseases. From your symptoms you will probably/possibly get a chronic lymes, fibromyalgia, chronic fatigue syndrome (I hate those words and they are soon to be changed to something starting with neuroimmune encephalytis or neuroendocrine (something) plus possible subsets of it. Go to an see who the closet specialist to you.

If you are going to go after SSI/SSDI you are going to have to get a diagnosis.

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