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Post by bros on Apr 23, 2015 20:43:04 GMT -5
Still don't have a job.
My neurologist ordered some regular blood tests end of January, got them done March 7th. They were highly abnormal.
We figured "Oh. It's just the lab. It's our first time there and we didn't really like the feel of the place anyway."
So I went to the local hospital that I know has a good lab. Bloodwork was a bit higher and still abnormal.
So my GP told me to go see a hematologist/oncologist.
I've been seeing him since the beginning of the month, every week.
He did a bone marrow biopsy last wednesday (Incredibly painful, by the way). I was hospitalized Friday night through Sunday afternoon because both feet turned a nice, dark purple and both legs swelled from the feet to the bottom of the knee. They have no idea what caused it - either an infection (treated with IV and oral levaquin), or my newly enlarged spleen pressed up against a vein and temporarily cut off some blood flow.
This week, he said he is currently thinking one of three possibilities:
1. An extremely rare lymphoproliferative disorder
2. An extremely rare form of leukemia/disorder that can develop into it (About 10 cases diagnosed per year, usually in 50-60 year old asian men - I am neither 50-60 nor of Asian descent)
3. An extremely rare form of lymphoma - My bone marrow showed signs of hodgkins lymphoma, non-hodgkins lymphoma, and an unknown type of Lymphoma.
So my oncologist is currently consulting with three world experts - one on the type of leukemia (He's at UVA Cancer Center) and two in rare lymphomas & lymphoproliferative disorders (One is at Memorial Sloan Kettering, the other at Columbia).
So yeah, it's been an interesting month and a half.
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Post by Mayleng on Apr 23, 2015 21:20:11 GMT -5
OMG! bros. I am so sorry that you have to go thru' all this. I hope they find out what is wrong soon and can help you. Be very careful with levaquin, it has caused me untold problems and pain for the last 6 years.
Take care. Hugs!
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Post by bros on Apr 23, 2015 21:22:15 GMT -5
Finished the levaquin today. Neurologist thinks it might've lowered my seizure threshold to induce a seizure when in the hospital.
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Post by healthy11 on Apr 23, 2015 22:48:53 GMT -5
Bros, I, too, am so sorry to hear about your latest medical issues. I've been seeing tons of hospitals/doctors/rehab settings over the past few months as caregiver for my elderly aunt, and she's on Levaquin as we speak, for suspected pneumonia.
I certainly hope they can identify and remedy whatever is affecting you quickly. I'll keep you in my prayers.
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Post by Mayleng on Apr 24, 2015 7:18:33 GMT -5
healthy, Flouroquinolones (Levaquin and Cipro) are counterindicated for anybody below 18 and over 60. It can make a elderly person look like they have dementia not to mention losing the ability to walk, tendon problems, Peripheral neuropathy etc. There are blackbox warnings out there.
Bros, you are in my thoughts. I am surprised that you had to finish the levaquin when they suspect it induced your seizure, not that I am surprised.
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Post by healthy11 on Apr 24, 2015 7:57:39 GMT -5
Mayleng, unfortunately, my aunt is allergic to penicillin, and due to her heart condition, she barely walks now, except to get up from her wheelchair into and in/out of bed. While she still has her mental faculties, some days she wishes she didn't, because she realizes, but hates, her current condition of being dependent on other people for help. Sadly, I don't think there aren't any "good" options, but we're taking things one day at a time.
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Post by bros on Apr 24, 2015 11:30:33 GMT -5
healthy, Flouroquinolones (Levaquin and Cipro) are counterindicated for anybody below 18 and over 60. It can make a elderly person look like they have dementia not to mention losing the ability to walk, tendon problems, Peripheral neuropathy etc. There are blackbox warnings out there. Bros, you are in my thoughts. I am surprised that you had to finish the levaquin when they suspect it induced your seizure, not that I am surprised. The seizure could've also been caused by lack of sleep the ngiht before. THey had me on it as a prophylactic antibiotic until yesterday. |
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Post by kewpie on Apr 24, 2015 13:46:59 GMT -5
Bros,
I am so sorry you have been going thru this. You have my thoughts and prayers for a speedy recovery and good health.
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Post by dhfl143 on Apr 25, 2015 19:18:43 GMT -5
Saw a Mystery Diagnosis or similar type show and woman who had feet that swelled and turned purple. She had a rare auto-immune disorder, which probably does not apply in your case, but am forwarding link -- just on case it would be helpful to discuss with your doctor: www.dianedike.org/#!blood-disease/c1n8o (Bros, you are going to have to copy and paste thread, because it won't post correctly; or go to link and then click on tab across top labeled "Cryoglobulinemia".) I am so sorry to hear your distressing news. Hope you are able to get some answers soon. Just wanted you to know you are in my thoughts and prayers. |
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Post by bros on Apr 25, 2015 20:18:26 GMT -5
Saw a Mystery Diagnosis or similar type show and woman who had feet that swelled and turned purple. She had a rare auto-immune disorder, which probably does not apply in your case, but am forwarding link -- just on case it would be helpful to discuss with your doctor: www.dianedike.org/#!blood-disease/c1n8o (Bros, you are going to have to copy and paste thread, because it won't post correctly; or go to link and then click on tab across top labeled "Cryoglobulinemia".) I am so sorry to hear your distressing news. Hope you are able to get some answers soon. Just wanted you to know you are in my thoughts and prayers. I believe that condition is primarily associated with temperature changes. Nothing unusual with the proteins in my blood - my guy has looked at my blood under the microscope every single visit - and when I was in the hospital. |
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Post by healthy11 on Apr 25, 2015 20:50:51 GMT -5
Bros, are you talking about Raynaud's disease? I remember Cobyseven's daughter had problems with redness in some of her extremities due to that...
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Post by bros on Apr 25, 2015 22:47:36 GMT -5
Bros, are you talking about Raynaud's disease? I remember Cobyseven's daughter had problems with redness in some of her extremities due to that... Talking about what dhfl linked - Cryoglobulinemia Vasculitis |
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Post by dhfl143 on Apr 28, 2015 22:31:50 GMT -5
Just checking in on you bros to let you know you are still in our thoughts. We're rooting for you.
Hope you get some answers soon.
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Post by bros on Apr 28, 2015 22:53:16 GMT -5
Seeing the hematologist/oncologist tomorrow and my neurologist.
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Post by bros on Apr 29, 2015 12:00:38 GMT -5
Hematologist/oncologist just called - he just got the slides from my bone marrow biopsy today and since I am not feeling any different, he would rather go to the hospital and review my slides and see me either later this week or next week - he should call tomorrow with results.
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Post by bros on Apr 29, 2015 16:28:44 GMT -5
Neurologist appointment was quick. He took me off the Depakote effective immediately and now I am trying out Vimpat.
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Post by mykids on Apr 29, 2015 17:12:54 GMT -5
Hope they get some answers for you soon. Keeping you in my thoughts and prayers.
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Post by michellea on Apr 29, 2015 18:49:08 GMT -5
Thinking of you Bros - this sounds like a very stressful time. I hope it brings comfort knowing that we are behind you.
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Post by Mayleng on Apr 30, 2015 7:04:25 GMT -5
Hugs! thinking of you and hoping you will get well soon.
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Post by healthy11 on Apr 30, 2015 7:21:26 GMT -5
Ditto to everyone else's comments; you remain in my prayers!
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Post by bros on Apr 30, 2015 17:03:47 GMT -5
back from the oncologist - he is thinking it is a T-Cell LGL Lymphoproliferative disorder (which can include lymphomas & leukemias) - he wants me to see a guy in NYC next week
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Post by michellea on Apr 30, 2015 20:03:39 GMT -5
Thinking of you, Bros as you are processing each bit of new information. I hope the visit in NYC goes well for you. How are you dealing with all of this?
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Post by bros on Apr 30, 2015 20:42:29 GMT -5
I don't really feel anything about it.
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Post by Mayleng on May 1, 2015 8:19:51 GMT -5
I hope the visit to NYC goes well. Hang in there.
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Post by dhfl143 on May 2, 2015 9:14:12 GMT -5
Ditto on Mayleng and Michellea's comments. Keep us posted. You've taken in a lot of information these past few weeks -- it can be a lot to process.
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Post by bros on May 4, 2015 11:35:29 GMT -5
Got an appointment to see the specialist - heading to NYC on wednesday
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Post by michellea on May 4, 2015 19:11:43 GMT -5
I will be thinking of you on Wednesday, sending you positive karma.
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Post by Mayleng on May 5, 2015 8:13:30 GMT -5
Sending you good wishes and love. Goodluck on Wednesday. We will all be with you.
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Post by healthy11 on May 5, 2015 8:45:51 GMT -5
Adding my hope that your visit with the specialist results good news! Travel safely...we had heavy rains last night that may be heading your way...
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Post by bros on May 6, 2015 16:11:55 GMT -5
surprise bone maarrow biopsies with only lidocaine to numb the pain sucks
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