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20857594 tn?1543810386

Update - Now I am worried!

In light of recent evidence, doscovered when I requested my entire lifes worth of records, I am unfortunately inclined to believe I have cancer of some sort.

Past diagnosis' & Findings:

-Hyperreflexia, Hoffman sign positive

- Babinski sign positive

- Linear T2 lesion on brain MRI, no details on specific location but appears to be base of the skull from looking at the image, from what I gather

-18mm high signal (T2) bone lytic lesion in spinal column

-Vertebral degeneration

-Uncal Osteophyte, also in spinal column, separate mass from first point

- Painless lymphadenopathy / Swollen lymph nodes for years (on and off, consistently now)

- Drenching night sweats, for last year and intermittently since 2012

- Severe weight loss, inability to gain weight... Lost 45 to 50 pounds in the last 16 to 20 months, despite eating huge amounts every day, during the night, and eating healthy at that

- Right atrial enlargement in 2017, now progressed to Biatrial enlargement

- Heart Arrythmia, noted over many ECG but never said exactly what it is

- Sky high WBC counts for years, over many many sets of blood work. Out of all the blood work done, MAYBE 2 are within normal limits. The rest are all very high and I've never been told

-Chronically low Platalet count

-Protein in urine, Albumin, twice, same with Ketones both fasting and while not fasting

- Rheumatoid Factor consistently over 10 but under 14 but negative ANA

- Asthma

- 20 to 30 seasonal and perennial allergies

-Plantar Hyperkeratosis

-Reynauds Syndrome secondary to systemic condition

-Osteoporosis

-Osteoarthritis

- Migraines, neck stiffness

- Gastrochisis (Under 1 year old)

Some interesting things:

- Doctors have seen my multitude of skin rashes but never acknowledged them in any reports I've seen

-Tradol made me feel pretty much 100% better when I went to ER recently... My lymph nodes even shrunk immediately after they gave me that via IV. Next night it was a steep decline back to feeling terrible, I believe as the drug left my system. As I specifically requested against narcotics, and Tradol is an anti-inflammatory, it is fascinating to me that I miraculously got better. And do in a similar way when I take Naproxen.

- Movement triggers muscle spasticity sometimes others it is random and as noted in my medical files, has caused at least 3 incidents of leg paralysis where I couldn't walk anymore because my legs seized up and stopped working. I only remember one instance so this demonstrates my next point...

- Severe memory loss / gaps

- Bleeding abnormalities, watery to extremely thick, deep cuts that dont bleed and instead just ooze out

- Plantar hyperkeratosis gets worse after treatment

-  Missing baby toenails since birth

... And more


I will be officially using this thread to track my disease, whatever diagnosis'os made, and whatever treatments. Any insight appreciated

Thanks,
Mike
4 Responses
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Avatar universal
Mike, if you had cancer of any kind it would be indicated in these notes. Some conditions may be serious i.e. unintentional weight loss, but most are inconsequential, not to you maybe, but medically speaking. If cancer was suspected you would be having MRIs, Cat Scans, specific blood tests and many other things, and I don't see these in your notes. Medical jargon is very difficult to follow for the lay person, and that is why it is sometimes harmful to read one's notes without a professional interpretation. If you had cancer you would be hearing from a doctor very soon for further tests. Please either take these notes to your doctor and ask him to explain things to you, or file them away and relax.

By the way, I am a nurse and should know better, but I am just as anxious about all these things as you are, and it has taken some convincing lately to reassure me that I don't have cancer!!!
Helpful - 0
2 Comments
The problem is they are only doing routine blood work ever since all the diagnosis' were given to me before. Or repeating the 2 specific blood tests such as ANA and Rf factor.

They havent done updated MRI or other scans in 6 years. I forgot to mention that.

Further, I remember reading that various cancers can only truly be diagnosed via biopsy, such as various lymphomas, myeloma, leukemia etc

Even further, from reading Ive noticed ANA is only really useful for Lupus. The other 20% of conditions are easier to find via other stains / immunoflourescent techniques

Rf factor is also an autoimmume positive on its own so negative ANA coupled with positive RF should warrant much more extensive testing but they refuse.

The constellation of symptoms, length of time between any substantive testing and today, getting so weak I cant lift a cup or walk properly, also due to the pain. Lymph nodes in my neck are visibly buldging out etc, but I guess theres nothing to do but move on?

Thanks, I guess
I am sorry to hear that you are suffering so much. I really don't remember you mentioning this in your last letter. I thought you were just looking at your notes out of interest. I think if I were in your shoes I would go to another doctor, or two, and try to get to the bottom of this as it is obviously causing you a poor quality of life. Failing that, I would also recommend therapy. You may think that's redundant, but I am sure you will agree that the body and the mind are closely linked and therapy may be of help in discovering what is causing these symptoms. Wouldn't hurt to discuss it with someone who would listen.
1081992 tn?1389903637
Hi, Mike. For starters, have you considered antiphospholipid syndrome? While that is well known primarily for causing thick blood, look at the other symptoms, including headaches, rashes, and even periods of *bleeding*. How many on the list can you tick off? It's also associated with with immune system disorders... you mention your RF, asthma and Raynaud's.

https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831
Helpful - 0
20841821 tn?1547942964
Hi Mike! Hopefully you are currently seeing a rheumatologist. If not that would be the first place I would start. All of your imaging and labs should be clinically correlated with your symptoms to provide an accurate diagnosis. It does sounds as if you have an autoimmune issue.

Here is some insight regarding your medical imaging: In regards to your T2 lesion on your MRI: With neuroimaging T2 is a weighted sequence commonly referred to as a FLAIR sequence (Fluid-attenuated inversion recovery). These lesions are one of the most common findings in MRI neuroimaging. I know it sounds scary, but usually just one lesion is not concerning to a radiologist or neurologist. Most of these lesions are due to migraines, brain aging, and ischaemic changes. A lesion like this can even be related to a past concussion. If the lesion was of concern, the radiologist who dictated your report would have put specific follow up instructions under the impression portion of the read. For an abnormal finding, the radiologist may recommend: additional imaging with a definitive time frame (usually 3 to 6 months or a year depending on the finding), correlating the findings with clinical symptoms or laboratory test results, or comparing the finding with prior imaging studies, if available. The vertebral degeneration finding is a result of aging. While it can cause pain, it is not associate with injury or illness. In regards to your lytic lesion in your spinal column, this was most likely an incidental finding. Radiologists use the revised Lodwick classification system when evaluating the appearance of a lytic lesion because this has been shown to be a reliable and accurate method of determining that certain lesions have a very high likelihood of not being malignant based on their radiographic appearance.

Seeing a rheumatologist seems like a logical place for you to start. They will order a rheumatology panel of lab work, which I know you have had before. They will also follow your weight loss and other symptoms. Most rheumatologists start with xrays for diagnostic imaging. MRIs can be difficult to get authorized through you insurance, but if that would make you feel more secure in a diagnosis you could certainly ask for that. If you do ask for diagnostic imaging you should do your best to track down your prior imaging results on a CD so they can upload your previous exams for comparison. I wish you all the best, and hope you can find healing soon.
Helpful - 0
363281 tn?1590104173
Hello, WOW! You are really going through a lot right now. You have been given some great answers. It does sound like it may be even linked to Fibromyalgia, polymyalgia or even Epstein Barr Syndrome. If you haven't been tested for these, I would certainly ask for them.
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