Ok I have a story to tell and then I have a few question. My 29 year old daughter discovered that she had severe anemia back in Feb. The doc thought it was due to a 5 year old gastric bypass surgery and an iron defiency. He inserted a port, and started IV iron infusions. After several she had a really bad reaction. They tried again, and once again she has a horrible reaction. Pain in chest, shortness of breath, headache....... While being hospitalized twice for this they did 2 non contrasts catscan of her brain and said all was well. The doc then said she was allergic to iron. Moving on.... She changed doc and found that she had a small ulcer in her pouch and that she had, had a slow bleed due to excessive motrin use. While seeing this new hemotologist/oncologist, she told him about a lymph in her neck that had been swollen for about 5 months. (she has Epstein Barr and her level had been elevated)
He did an MRI with contrast, no other test and told her she Hodgkins Lymphoma. First question, can you determind Hodgkins without any type of biopsy? She has an appointment with him several weeks later, to discuss options for treatments. She then tells him about these headaches that she has been having. He orders and MRI with contrast and an MRI without, he ordered a sonagram of her salvatary gland and thyroid. ( In the middle of all of this she had a severe abscessed tooth which required extracting 2 reg and a widsom.) By the way all of this has been on her left side.
The sonagram comes back negative. The MRI of her brain cames back, white matter changes, toxic metabolic change, and aniomas. All on the left side. Her headache is on the right.
The sonagram of her other glands looked good.
She has to her IV port (on left) on Wed, due to an small tumor of neves forming around it and causing her great pain.
She saw a neurologist and he wants to do an MRI of her spine to see if there is any Lymphoma in her spine then he wants to do a spinal to see what the toxic metabloic changes are.
Her oncologist finally ordered a pet scan due to the neurologist suggesting it. That will be done on Tuesday of this week. I am just searching for answers here.
My next questions are: Do you think this sounds like lymphonma of the brain?
Do you think any of these other issues may be playing a part in any of this?
As asked earlier, can you dignosis Hodgkins without a biospy?
My mind is just boggled by all of this.
Would the earlier CT scans without contast have showed any of this?
Could the port, and teeth be causing any of this?
See private message for extensive info on Hodgkin's. Biopsy is the way to diagnose.
Did they never try iron supplement pills with at least 250 mg of Ester C, only IV? Iron is found naturally in the body and I find it hard to believe your daughter is allergic. I know I often have reacted differently when getting something IV versus shot or pill. For instance, potassium- took the pills, didn't notice a problem (also something naturally found in the body). Was given an IV, had chest pains like I was having a heart attack and made them stop. Phenergan (not naturally found in the body) take a pill or IM shot- makes me sleepy, get it by IV- makes me highly nervous.
I know that in stroke (definitely not saying at all that your daughter has this), but if the stroke is on the left side, it's the right side of the body that is affected. I wonder if there could be any connection though, between evidence of abnormality on the left side of the brain and headache on the right? Or perhaps the headache is unrelated?
An immediate relative of mine I believe had non-specific white matter changes and his doctor told him he had it too and it meant he was aging faster than the average person his age. He also had evidence of microvascular disease. I take it you meant angiomas rather than aniomas? Did the do an MRA/MRV to look more extensively at the blood vessels in her head? Did they explain how they figured out metabolic toxic changes?
I had a cousin who let a tooth infection go too long- he had a congenitally defective heart valve and the infection travelled there and he wound up having a stroke and passing away a few days afterward. Glad your daughter got that abcess treated!
Thank you for your question. In white matter disease or microvesicular ischemic disease of brain, pathology is associated with the brain white matter, either exclusively or in combination with grey matter changes. It occurs due to metabolism errors, exogenous toxins released by virus, autoimmune disease, leukodystrophy, demyelination, and radiation effects. Spasticity, muscle weakness, paralysis, hyper-reflexia and movement disorder may be the clinical features associated with white matter disease that need to be evaluated thoroughly. However, it is sad to say that there is no permanent cure but conservative treatment & physiotherapy exercises that would help you to regain your normal function and stopping the further progression of the disease. Please consult a neurologist in this regards. Hope this helps.
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