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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
My name is Nikki, I'm 46 years old and I was recently diagnosed with idiopathic peripheral neuropathy with symptoms of numbness and burning pain in both feet. In February of 2018, it started with a little numbness at the base of a couple toes and has since spread to constant numbness in both feet. My primary care physician was as thorough as he could be (blood tests, EMG, etc.) and because I have multiple autoimmune diseases (vitiligo, IBS, eczema & hypothyroidism), he ruled out MS, Lupus along with Lyme disease, diabetes and probably other diseases which I just can't remember He prescribed Neurontin, starting at 300mg 3 times a day with the goal of 900mg 3 times a day but the side effects (fuzzy brain & blurry vision being the worst) were too much so I topped out at 600mg three times a day. I was also prescribed Elavil (75mg) to take at bedtime to help me sleep better. There was no relief, no change in my symptoms with that medicine, so he then referred me to the Cleveland Clinic where I met with a neurologist in October of 2018. He ordered many blood tests, an EMG, a skin biopsy, a vascular ultrasound and I had an appointment with an endocrinologist to make sure my hypothyroidism was not the cause. He also started me on Lyrica with the end goal being cutting out the Neurontin entirely due to the debilitating side effects and having Lyrica take over. All tests came back normal so now they want to refer me to a "functional medicine doctor". This whole situation has been physically and mentally draining. I have been a stay at home mom for almost 11 years but had recently gotten back into the workforce with a legitimate work from home position which made me so happy. However, I lost that job because I can't retain new information and I can't seem to think straight anymore. It's almost like my brain is misfiring where I know I should know how to do something but my brain is just not getting there. I will be honest.....I have become extremely depressed (not suicidal) since learning all the tests from the Cleveland Clinic came back normal. My symptoms have continued to worsen with no clear diagnosis. This Tuesday, I am going to see a psychologist who helped me deal with my grief when both my parents passed away from cancer back in 2005 and 2007. I'm sure this is all way too much information but I wanted to paint as clear a picture as possible. I really need to chat with and learn from others who are suffering from the same issues as I am.
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@nicoletta8 A functional medicine doctor looks at things differently. They look at the chemical processes in your body and try to prevent problems at that level by figuring out if something is out of balance. The prescriptions can also change all that and possibly that doesn't work well for you. We are all different in what works medically. You could have some kind of vitamin or mineral deficiency leading to symptoms. A big factor is inflammation, and they look for causes and try to prevent them. that might include allergy shots or hormone balancing. If you are a person with gluten intolerance or celiac disease, that can cause tingling in your extremities and it is an autoimmune reaction to a compound in wheat and other grains. They are so pervasive in foods that you might not even know they are there, yet your body reacts. I have been seeing this type of doctor for years, and it has helped my health a lot. If I had only been seen by conventional doctors who treat symptoms, I'd be on a lot of prescriptions, but instead, I've been preventing the issues and avoiding unnecessary medicines. I have a lot of food allergies in addition to gluten and environmental things. My doc is an environmental allergist and functional medicine guy. His approach is also different on hypothyroidism and he does not base it on average readings as normal, but on what it does in the body. That makes a big difference. Grief could be part of things for you, but normal tests are good news. Just remember that they don't tell the entire story. I think a functional medicine doctor is a good one for you. Autoimmune problems can come from toxicities. For example, my old silver amalgam dental fillings caused my hashimoto's thyroid problem (autoimmune) and I had them all replaced. I know it's hard to go on without a diagnosis, but that might happen in small steps, and it may take multiple doctors to figure it out. At 46, you might also have some peri-menopausal symptoms and that does affect memory for some women. You can get bio-identical compounded hormone replacement, if that is what is causing your symptoms. A functional med doctor can assess that too. Those hormonal changes do cause anxiety for some people and up and down emotions. Do whatever you need to grieve so you can get past that. It's different for everyone, and so important. It's OK to have those feelings, and do reach out when you need to. I suggest keeping a journal to write down your feelings so you can process it, and a psychologist can be a big help.