Please excuse my delayed response. I’ve read through your story twice now just to make sure I understand all that you’ve gone through. I hope you can see from the wonderful people who’ve responded, that you are not alone in this fight. I too have battled doctors, nurses, triage, a mountain of symptoms and unanswered questions for 1/2 a lifetime.
The only thing that ever got me through what seemed like an eternity of false answers, is the love from my family and friends and the hope that one day I have the strength to push through the naysayer’s, unreliable sources, incompetent specialists and non-believers because there has to be someone out there willing to do the things necessary to see it through, and they have.
Never give up, give in, or give away to defeat. No one knows your body better than they do, but they need your help to properly investigate the matter further. Not sure if you keep daily accurate records? If not, I would recommend you start logging your symptoms on a daily basis, including the time you feel pain, swelling, soreness, loss of appetite and how you slept the night before.
If you haven’t already, please try to get an accurate and complete record of your health history. Add them to a binder in different topics according to the type of visitation and the result, or lack thereof.
Now, I can’t respond to each of your health concerns, but here’s what I can respond to…
1) Chronic Ulcers:
As @zenk stated, you definitely want to get a second opinion and biopsy of your wounds. Blood tests are not enough; a full biopsy of the skin is necessary to see what kind of chronic damage is being done. Find a competent dermatologist. I had to go through 3 of the best to find one that suited my case and had the knowledge necessary to make sound, appropriate decisions. Skin care is one of humanities most sought after holly-grail’s.
Now it might be a case like mine. My vascular network, damaged and bruised is the cause of my ulcers. Blood pools, valves don’t work, etc. Having a surgery can definitely affect your U-R system in the same fashion. Whenever we have any sort of traumatic event, the long-term damage is what affects us the most.
if you’re really interested to see what’s going on with your vascular system, I would recommend you go see an Interventional Radiologist. An IR can map out your inner vascular system to seek out problem areas.
Interventional Radiologist are recommended by the Hematology department.
Specialized Massage Therapy: Lymphedema
While you’re at it, you should also speak to a specialized nurse who is trained with helping to treat “Lymphedema”. Your lymph nodes as you mentioned are like mine, chronic and painful. With one or two sessions, you can learn how to massage your lymph nodes properly to “drain” them of the toxic fluids being collected from your body.
2) Blood Tests:
With all the blood tests they’ve performed, have any of them tested for mass infections at all? Have you been prescribed any antibiotics? A great deal of the symptoms you mention seem similar to when I have an infection from my leg wounds, etc. The hot/cold sweats honestly sound like your immune system is fighting something serious. A great deal of alternative foods is available to help the body fight off foreign bodies (ex. garlic, honey, green tea, vitamin C, probiotic yogurt).
3) Livedo Reticularis & Livedoid Vasculitis:
The more I work with professionals in the Thrombosis community, the more I’ve learned that LV & Blood Clotting go hand in hand. Although most of the LV sufferers here within the Connect community haven’t suffered through a blood clot, there seems to be a direct correlation with LV and Thrombosis and potentially a condition which I have called: Factor V Leiden.
Even to this day specialists keep saying they had no idea what LV was and its connection to Thrombosis, and this is coming from the top echelon in the field, so we still have a lot of work to do.
This is why they prescribed Aspirin to you. Aspirin thins out the blood, while also helping with inflammation and pain. In fact, in the past, they prescribed Aspirin to treat Blood Clots. All of which pertain to your case. Haven’t seen whether this is a permanent fix, since you’re still experiencing the same pain, but it can go a long way to preventing further damage. Please be extra careful when taking Aspirin since taking more than recommended is extremely dangerous. As an example, I’m on blood thinners for life. In fact, I’m on Xarelto, the same pharma that designed Aspirin. If I were to take even one Aspirin, I am in great danger of bleeding internally in the next 12-24 hours. So if you need pain relief and cannot get a prescription, I would take Aleve & Tylenol. Probably not recommended*** BUT, when I’m in dyer pain and I don’t have an alternative, those two over-the-counter meds seem to tie me over for a bit. AGAIN, talk to your GP before taking more than necessary, one combination of meds can be ok for some, while others react vastly different.
Now what does this mean for you?
Well here’s where the “health records” come into play. Since Dermatology & Thrombosis teams don’t usually work together, you’ll have to help them both to do their investigative research together, but separate. I’ve done this by bringing a full binder to every meeting I go to. This way I can reference tests, diagnosis, and even symptoms I’ve had in the past. All medicine is just an investigative research. Doctors typically have 10 minutes with each patient and that’s it. It’s up to us to fill in the blanks on our own (horrible I know, but until it changes, it’s up to us).
This is a good step to take. We are now only piecing the two together. There’s a HUGE correlation between Cancer and Thrombosis which if your hematologist doesn’t tell you about, then ask them asap. I understand these two are probably scary, but if you’re anything like me, I would much rather know the “what”, so I can concentrate on the “how”. Not knowing the “what” is probably the single toughest challenge for patients worldwide.
Try to Stay Calm:
I can feel your anger, heck, I fully understand it 100%. Years ago, I used to fight my way through each visit. While working with patients who have extreme cases, I try to always remind them to try and stay calm when seeing a specialist. The last thing you want it to be marked as an “unruly patient”. My file was once marked in a similar fashion, in fact, I would be tossed around from doctor to doctor because they didn’t have the patience to hear me complain about everything. I know it goes against everything in your heart. I find the calmer I am, the more receptive they are to listen to my ideas and to come up with better ideas for the future.
I did a presentation a while back on the “mental aspects of a patient” to professionals in the field, the #1 response I got was: “wow, thank you, I never truly understood how a patient feels about me and how I treat them, I always took it so personally.”
Full Body Scan:
You’re going to hear the words, “I don’t believe in them”, but I wonder if it’s time they perform a full body scan on you. I’m a big fan of tests that doctors dislike. Yes, it can find signs that don’t relate, but it can also find abnormalities in your body that weren’t considered. I found out I have 1 kidney and an abnormal bladder, go figure! What did that mean for me? Well I found out why I have a great deal of problems sleeping on one side and why I’m up all night peeing.
See you never know what’s just around the corner. I understand how you feel, how your whole world seems to be looking outward from this dark cave no one seems to be able to find in the woods. If you can find the strength to light a fire in that cave, you’ll soon see others who find you as well and the more that you connect with, the less lonely you’ll start to feel and the easier it will become to venture out and tackle the daily hardships.
I hope our messages have helped you somewhat. I’m sure some of it is probably not what you needed at all, but I’ve always said, If I can just learn one thing about myself, that one thing is one more idea I never had before and can help me to discover the next big thing.
Like always, please speak to your doctor before trying something new.
I wish you a lot of happiness and love.
Martin. R. Lemieux, Patient Advocate