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Old 07-23-2012, 08:23 AM   #16
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Also this morning my husband was suppose to return to work. He got up with me, God bless his soul he was clearly very sore. His pants are falling off him and his shoes barely fit because they are clearly swollen. It's weird because I pressed my finger against his feet and on his ankle but it doesn't leave an indentation like when hands or feet are swollen it looks puffy but harder or tough? He looked like he was walking with shoes full of marbles

 
Old 07-23-2012, 10:29 AM   #17
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

The blurred vision could be from keratitis, iritis, or optic neuritis ,inflammation of cornea/iris/optic nerve seen in retina of eye, which does happen in autoimmune disease. Has he been seen by an opthalmologist? That would be helpful while these symptoms are present. Hope to hear from you after you get the gallium scan report.

 
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Old 07-23-2012, 02:13 PM   #18
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

I was on the phone all morning calling the hospital where the scan was done,
Then calling the doctor who requested the test to beg them to ask for the results....then telling them to forward the results to the oncologist by today because he has an appt tomorrow morning. The nurse called me from the second doctor at 3:45 pm telling me they did not receive any fax with results!!
I was in the car with my husband that just got a catscan of the shoulder where the lymph node is swollen. I called back the doctor to see if I could go in person to get results and they said to be there soon because they close at 4:30!
So I back out of drive way and head over to get results,
I get them and nothing abnormal is found. So we are glad nothing bad was found but more frustrated that we are no closer to an answer.

We will see what the dr says tomorrow. I asked my husband a question because I noticed bright light or sunlight bothers him way more than usual. He said that the sunlight hurts his eyes a lot unless he wears his really dark shades . Also at work he said the type of bright lighting that they have hurts his eyes. I asked hurt?? He said yes it hurts too much after a while. So another problem that he never had before. I have heard about this before and forgot the spelling but it was like photosensitive ??

I have written all his symptoms and there are like 4 new ones in the past 2 weeks.

First symptoms May 2012

Swollen painful lymph nodes in neck

Fever 100.0-103.5 on and off 3+ months

Severe chills/ shakes BAD 2 months

Night sweats/ cold sweats always clammy

All over joint pain severe

Pain in lower right side under rib cage (this has been scanned a bunch of times and nothing ever found?)

Weight loss from 210- now 185 in 3 months (25lbs)

7/2012 dr found painful swollen lymphnode in left collar bone

Fingers/ toes turn pale and hurt,has toe spasms

Blurred vision/ eye feels tender sometimes
Sight has not returned to normal for over a week now

Has become very sensitive to sunlight and bright lights at work
He says his eyes hurt pretty much if he is outside with out his shades on.

I wrote all these symptoms down and will give them to dr tomorrow.
4 more symptoms have popped up this month. This is why I am scrambling to keep on top of doctors

 
Old 07-23-2012, 02:26 PM   #19
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

The term for this is photophobia (when referring to eyes) and photosensitivity means getting a rash or sick from sun exposure. With the photophobia developing, have they done a CT of sinuses? I also wonder if a spinal tap has been done. Some autoimmune diseases cause a "sterile" aseptic meningitis. Another thought is Still's Disease- a form of juvenile rheumatoid arthritis that can present in adulthood and makes people very sick with lots of symptoms he is exhibiting. It is treated with immune suppressants. The rheumatologist would know about Still's and the neurologist could do a spinal tap looking for aseptic meningitis. Hang in there! Hugs!!!

 
Old 07-23-2012, 02:30 PM   #20
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Quote:
Originally Posted by ladybud View Post
The term for this is photophobia (when referring to eyes) and photosensitivity means getting a rash or sick from sun exposure. With the photophobia developing, have they done a CT of sinuses? I also wonder if a spinal tap has been done. Some autoimmune diseases cause a "sterile" aseptic meningitis. Another thought is Still's Disease- a form of juvenile rheumatoid arthritis that can present in adulthood and makes people very sick with lots of symptoms he is exhibiting. It is treated with immune suppressants. The rheumatologist would know about Still's and the neurologist could do a spinal tap looking for aseptic meningitis. Hang in there! Hugs!!!
The oncologist actually mentioned wanting to do a spinal tap , wanting to check his bone marrow.

I will post what he says tomorrow

 
Old 07-23-2012, 02:38 PM   #21
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Just did a little research on Still's disease and yes he has a lot of those symptoms but I e thing that stood out is that in stills disease the ANA test is negative, his are positive also no swelling of spleen, nothing found in heart either...

 
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Old 07-24-2012, 07:10 AM   #22
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Greetings! Some people have observed spinal stenosis after a spinal tap I think personally I beg out of that one and the bone marrow which can cause infection in bone but everyone makes their own medical decisions. Checking the white blood cells condition may do nearly as good in my opinion anyway but perhaps I am mistaken. There is also an Antimalignan antibody serum test which can test for cancer. Peace, sjb

Last edited by sjb; 07-24-2012 at 07:39 AM. Reason: deletion and addition

 
Old 07-24-2012, 07:57 AM   #23
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Greetings the coxackie virus mentioned in the first post may be causing more trouble than is realized with the vision and other things I would work on antiviral measures. In addition to bay leaf tea golden seal tea is also supposed to be antiviral. I personally might want to use ice cold cloth over the eyes 5 minutes three times a day to try to prevent any hemorrhaging there. Peace, sjb

 
Old 07-24-2012, 10:07 AM   #24
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Back from doctor appt. the gallium scan is clear so nothing abnormal found but as the doctor said sometimes gallium scans don't pick up some abnormalities.
His catscan of neck is back and there Is cause for concern.

Radiology impression:
Extensive shotty lymphadenopathy within the base of the neck bilaterally.
More dominant lymph nodes are seen on left supraclavical region.
Largest measuring 2.8 cm. , 2.4cm, and 1.4cm. The bulky adenopathy is suspicious and possible etiologies such as lymphoma could be considered.
Clinical correlation and correlation with biopsy is recommended as clinically indicated.

I understand what lymphadenopathy,supraclavical , adenopathy and lymphoma mean. The oncologist is baffled because he said my husband has clear signs of Raynaud's phenomenon , joint pain all over are not common at all in lymphomas. He said that Leans more to rheumatology diseases.
So he. Ordered a biopsy and we should get a call within 24-48 hrs to get an appt date and time for biopsy. Results take about 3 days. Idrove him to work after all this and he was clearly shaken and about to cry and so was I. I Gave him a strong talk I did not want to break down in front of him. I let him know that no matternwhat God will see us through all this but he has to fightnp matter how scary things may get and I. Will fight with him. I dropped him off and saw my once super muscular weightlifting man now walk slowly and limping inside his building. We blew each other kisses and held up the sign language sign for I LOVE YOU.

I pray for strength, patience,guidance and for our miracle to come to pass.

 
Old 07-24-2012, 10:46 AM   #25
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Bless you both for all the stress and uncertainty you have endured. Some words of encouragement though- even if it is lymphoma, that can be treated, and depending on type, aggressiveness, etc., many people are put into permanent remission with appropriate chemotherapy. My Mother had lymphoma at age 84 with extensive, large lymph nodes, had chemo, and has been 100% free of it since then. She just got remarried in April (at 87) and is travelling all over and having a ball with her new hubbie of 83. It is amazing how sick someone can be, then make a complete turnaround and get their life back with appropriate treatment. So please don't give up hope. This type of cancer is NOT a death sentence, and the biopsy should clear up the diagnosis once and for all. They may want to do a PET scan to see extent of lymphadenopathy, size of nodes elsewhere etc for baseline and to stage it, if it in fact turns out to be lymphoma. I wish you the best going forward, but remember that either the autoimmune diseases or lymphoma can be treated successfully, so try to keep a psoitive outlook, and know you will have an answer finally in just a few days.

 
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Old 07-24-2012, 11:22 AM   #26
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Greetings, I think in my opinion it a bit unusual to have a fever with Raynaud's unless there is also a rash or other complicating factors. Cat scratch disease also came to mind but there did not seem to be any mentioned pulmonary symptoms associated with it, nor am I sure there is a cat or scratches or bites or swelling around a scratch from it. I thought I would mention it just in case. I still tend to go toward the Coxackie virus explanation as mentioned in the first post. If the doctor is correct about Raynaud's phenomenon it is usually aggravated by being emotional and by cold temperatures.

Sweet happy words and actions are definately of use regardless of state of health since even healthy people like them and sick people can benefit from them. I might also check to be sure the thyroid is not too low. In Raynaud's sometimes the extremeties may become a dusky dark color, or sometimes red, or red and white mottled color or sometimes white color. In winter I might use a heavy cap and maybe hood on top, heavy sport mittens in winter will be more useful. Gloves can be used for cold door knobs, car doors and handling cold or frozen things in the refrigerator or freezer. Avoiding overheating may also be of use and no frozen, cold or extremely hot foods should be used. Have a nice day! sjb

Last edited by sjb; 07-24-2012 at 11:36 AM. Reason: additions made

 
Old 07-24-2012, 02:08 PM   #27
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

I'm sure IF it turns outnto be this, they will do tests to see what stage and go from there as to what treatment. I have not slept well, maybe 3 hrs last night and I knocked out for about 20 min and my husband called me to pick him up from work early.
It seems that his doctor filled out his FMLA papers that he could work for 4 hrs a day and if he felt ok he could finish the rest of his day. Well the HR interpretated it that he could only work for 4 hrs a day .
I rushed to get him and I was just glad to have him home.

Thank you guys for being here. I will post when they give him the appt for biopsy and results

Last edited by moderator2; 07-24-2012 at 06:57 PM.

 
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Old 07-24-2012, 05:35 PM   #28
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Greetings! You are welcome! I think I would request the doctor to clarify that with whoever needs it at least by phone if not in writing so that he will not be limited and I would ask right away before he forgets the intention. Peace, sjb

 
Old 08-09-2012, 06:53 PM   #29
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

It's been a while since any updates but this is where we are right now.
They removed 3 lymph nodes including the one in left collarbone. The pathology report should only have taken 3 days but they don't have enough to say definitely. It shows that 35% t-cells are abnormal. Could either be due to something viral /infection or t-cell lymphoma. The pathologist is running further test that will take at least 7 more days , checking different b-cells and t-cells.

The oncologist is baffled because he told us that my husband's severe ankle swelling and and wrist swelling is not typical for lymphoma.
Specialist for infectious disease says its IMPOSSIBLE that this is a relapse of Coxsackie b virus. BUT I tried to also explain that I have found plenty of patients that are still suffering with post viral syndrome of Coxsackie. If you have an immune problem. His ANA test was positive and now it's negative, the ANCA test is negative. He was told months ago that he was at risk for lupus because of some bloodwork results. Two of his sisters have lupus. They have said this is NOT LUPUS. The oncologist has referred him to a big university hospital for further evaluation on the 15 th. the results should be in by the 15 th hopefully.
We pray daily and just have our main trust first in God. I go through ups and emotional downs. Sometimes I sleep great and other times, I just close my eyes and it's like I think I have an appt and I can't sleep and have pressure around my eyes.

 
Old 08-09-2012, 07:13 PM   #30
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Re: PLEASE help, sick for 3 months, swollen lymph nodes now 1 in left collar bone!!

Gennel,
So glad to see your post. I have been thinking of you both a lot and wondering how your hubby was doing. The plan going forward sounds good, and I hope with more pathologists viewing his biopsy, there will be an answer soon. Did they ever do a PET scan? It shows up abnormal lymph nodes anywhere in the body. Please let us know how things are going. In the meanwhile, I think there are lots of people praying and hoping for the best for you both.

 
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