New to Neuropathy 2 months.

Dearest Toni, you are an inspiration to me and I'm sure to so many others! Girl, what you've been through is beyond what most go through in life. Kudos to you for your motivation and positive spirit! May God richly bless you! Warmest hugs, Sunnyflower

Agreed. If you take any medications you should consult your doctor prior to taking herbal supplements—ginger, turmeric, green tea, echinacea, THC/CBD, etc. All drugs, supplements, etc. are metabolized by enzymes in the liver. More than 50% are metabolized by CYP3A4. Anything metabolized by this enzyme can interfere with your medications. I am on anti rejection meds, including Tacrolimus...there are more than 700 drug and food interactions with it. Drugs.com is a good app I check when I don’t know about an ingredient I find. I eat very well and shop at a food coop. But I have found that natural foods often contain herbs or flavonoids I cannot take, so I am also careful to read labels.

I appreciate it Sunny, thank you. I always look for ways to improve my health. After all everyone has that option. We all are different with what we can tolerate and feel. What may work for one may not work well for another. It all depends on how we tackle things. From an early age I experienced doctors for my parents(I was their interpreter) and myself. I learned from those experiences to form my own opinions and help myself. Growing up, I had made the library my best friend in finding information. Today it is so much easier with the internet. Information is at our fingertips and available at any time. My motivation is to feel better and be able to do more. I owe it to myself and my family. Things are not easy for me. I push myself as long as I do it safely. Remember, if things were easy everyone would do it. With my new way of living I try to do as much as I can on my own. Perhaps remaining active has helped my brain to rebuild itself. I am starting to believe what doctors had told me originally were myths i.e. I would regain any physical health within my first year after the AVM. Sure, there is data to support that but what if all the stroke and AVM survivors were told the very same and after a year they gave up thinking it would not make any difference. The data would support a decline. Why is it that we see reports on the news of patients walking within 3 years when their doctors told them they would never be able to walk again. I believe perseverance is a big factor. What do we have to lose anyway? The time will pass no matter what we do so why not be productive in helping ourselves. After all the doctors are not in our shoes to help us with our experiences. Medical information changes through the years so I use their knowledge in order to help myself. As a result, now going on 4 years after my AVM, I am finally feeling better. No doctors gave me good advice. Looking back, the timing of my symptoms helped me tremendously in determining what was the next best thing for me. I am glad to have finally figured it out. Take care of yourself Sunny. You have the upper edge by being in the medical field for 20 years. Oh, you had mentioned about me having confidence in myself. Well, I gain that by trying things. I learn to please myself. By trying(like making meals) I have no one else to impress but myself so who cares if the results are not favorable. One learns by trying. You build on forming confidence in yourself. You can’t build if you don’t try. Toni

Hi @avmbellar. I'm so impressed with your motivation and your will to improve your health! I was in the same boat 1 1/2 years ago, using a wheelchair, needing help for almost everything - showering, dressing, being wheeled everywhere, needing an assistant with me for doctor appointments, the whole thing. Like you, I fought my way back to a much better place. I'm so independent now that folks tell me they are amazed at how I've overcome the disabilities I was hampered with, how much I've improved, etc. I'm a new person, where back in those wheelchair days, people had almost written me off. I've posted before on all the diseases and issues I had/have
so I won't go into all that again! Suffice it to say, that like you, I didn't accept what the medical world thought of my chances. Bravo for you! You are amazing!! You rock!!
All my best to you,
Laurie

Hi @athenalee I agree foods whether natural or not should always be researched for causing any harm to our health. Check with your physician first. It is your best bet before starting anything. Your physician is a good resource for confirming your knowledge. I was taught all medications are either metabolized in the kidneys or liver. With that being said, it allows for options in case the kidneys or liver are not well functioning to handle the metabolism of any medications otherwise no medications at all would be tolerable. Toni

Hi Laurie @artist01 thank you! You are awesome, a great model for coming a long way with your health! Congratulations! It is wonderful to hear you have become more independent due to your perseverance with your medical beliefs. Keep on rockin!
It is amazing what our brain will allow us to do as long as we have the desire. I agree I don’t have much faith in the medical world. I didn’t believe much of what they were saying before my AVM but with this experience the medical industry over all has been a let down. It clinched it for me to try to help myself because as you said I felt I was written off. I didn’t want to continue from doctor to doctor for answers in fear of becoming a guinea pig. I can’t believe I reported my symptoms to so many physicians and not one stopped to ask any questions to help with my symptoms not even my recent PCP. Yes, I continue with my respect but only know they are a resource. My PCP office also gave me wrong advice. I guess if I had said anything their reasoning would be they are not specialists and to go to a neurologist. Well, all I asked was basic questions for advice. I have learned that doctors have to practice using a guideline set for them( for reimbursement ). I’m afraid this will cause many to NOT think outside the box. It is a shame because with set guidelines I believe it makes it easier and more accurate for machines to make a medical analysis and treatment than a person.

Thankyou for your great reply @avmcbellar. I can relate to you so well since I, too, have an AVM. Mine is on the brainstem, (yikes!) so I was once told I am like a walking time bomb. That was 25 years ago. Still rockin' ! You've had the surgery, so that's good. Mine is inoperable, so that's not so good. Lol. I used to obsess about it, but now, it is what it is!
Keep up the great work!

It’s all about the enzymes! I have found it fascinating to learn about the metabolism of the meds I need to take now. Up until a year and a half ago when I became ill I hadn’t taken much more than antibiotics, plus herbs and homeopathics. But I quickly learned not to break the Dr.’s rules on my meds when I took two homeopathic tabs for a sinus issue and my liver enzymes shot way up!

Ooh, yikes is right @artist01. The brainstem is a difficult location. You are very lucky. I am assuming there was no rupture. Doesn’t the brainstem involve involuntary control or movements of your body? For new assessments of your AVM you must have to undergo tests often. Do you go through cerebral angiograms? It is difficult either way, ruptured or not ruptured. My friend in Pennsylvania ended up with a concussion due to a fall. During her hospitalization it was discovered she had a cerebral AVM and a cerebral tumor. The doctors decided it was more important to surgically remove the tumor but keep an eye on the AVM because it was inoperable due to its risky location. She has to go through tests every six months. She is doing OK. I spoke to her last week and find out she caught the coronavirus back in November. Her sense of taste and smell has not returned yet. Interestingly her eyesight digressed. She had diplopia as a result of her fall and was doing well with her eye exercises until covid-19 hit her. She had to revert to an older pair of eye glasses with a prism to be able to see again. It goes to show we deal with whatever comes our way and that takes a lot of strength. I applaud you for all your efforts. I can truly appreciate how difficult it can become. Thanks @artist01. You too, keep up with the great work!

Hi again @avmcbellar. Yes, the brainstem is Control Centre for us. No rupture for me (yet?), or it would be game over for me, so they say! For years, I saw my neurologist quite often and had many, many CT Scans and MRIs, but now it's kind of Old Hat for the docs, I think. I usually have a scan once a year now. However, I've had 2 smallish strokes, a blood clot in my leg, and a TIA in the last two years so there have been numerous MRIs and CT scans for all that. The report usually states as well that the brainstem AVM has seen little change since the most recent scan. It's always of interest (curiosity?) to new doctors I meet. Lol. Keep doing what you're doing! Laur