Can anyone help?
I was diagnosed 15 years ago with fibromyalgia, Depression, and anxiety disorder. I recently was diagnosed with an autoimmune disease., a Vitamin D Deficiency and a Vitamin B 12 Deficiency. My doctor sent me to a specialist in Winchester Virginia, he was a new doctor there. He tested my blood , then asked me some questions about my symptoms. He then told me I didn't have lupus, Arthritis, or Sjogren syndrome. He did not check me for any other disorders. I'm frustrated and upset. There are so many autoimmune disease s out there , but yet you are only going to check me for 3 of them , what is wrong with that doctor ? I been having stabbing pains in my legs and arms along with burning pain in them also . The pain sometimes gets so intense that it feels like someone is stabbing me with a fork and is twisting and turning it back and forwards . I don't understand why he only checked for 3 of the diseases and not for the other ones . I'm in pain so much now I miss work because of it . I need answers and I'm tired of the run around 😒.
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Check with your primary doctor, if you are not satisfied with what he tells you then find another doctor. I had a very similar problem, my doctor took blood work at my insistence but nothing showed, I was loosing hair a lot and in constant pain and gaining weight a lot. I was thankful for my insurance being I could go anywhere without a referral so I made an appointment with an endocrinology doctor taking the lab reports of what my primary doctor had done, I wanted to make sure that I wasn't a diabetic. He did much more testing, was extremely great. no diabetes but the endocrinology doctor told me that there is lots of different (hundreds) of autoimmune diseases and it would take different specialist to find if they were to find the one I had. He referred me first to a dermatology doctor to do further testing on the hair loss. Each specialty doctor can only do the lab work that is in their specialty. I took his labs with me to the dermatology doctor, more labs done. No answers but the dermatology was able to give me RX for shampoo to use to help with the hair loss. Finally seeing improvement there. Pain continued though, went to Chiropractor had full body scan. Displaced bones in spine only showed. After weeks of chiropractor not much improvement with pain, went back to primary and was given order for MRI for the back. MRI showed slipped disc on the bottom pressing against the sciatica nerve. Finally an answer to the pain and that is what the body scan was showing. Now have to see a Neurology doctor. So the meaning for you is to not stop with one doctor, only you know when your body is hurting or there is a problem. Go to see specialty doctors that matches your aches and pains. If your foot hurts go to a podiatrist. Even if you need to change your primary doctor. They are only human and they practice medicine differently from others. Keep searching don't give up. Don't treat yourself with over the counter medications. Find a good doctor that you are satisfied with.
I spent a lot of time bouncing around to different doctors but should have focused (in hindsight) on my neurological symptoms. It sounds like your symptoms are linked to your central and peripheral nervous systems and you may need to see a neurologist for testing (MRIs to check brain/spine/nerve roots, EMGs for arms/hands and legs/feet, small fiber neuropathy punch biopsy, nerve conduction studies, etc.). I’m in the process of going to a new neurologist for updated testing of my CNS/PNS since everything seems to be slowing down and my body not functioning or communicating properly. Good luck and don’t give up advocating for yourself! Doctors are human, not God (even though some think they are), make mistakes, have biases, make assumptions, etc. and can be flat out wrong. Don’t hesitate “firing” your doctors and finding those who really listen to your symptoms before prescribing new medications or constantly test you with no diagnosis or treatment (I went through this for years). Also watch out for doctors throwing lots of antidepressants at you because you are a woman. Not to say they may not be needed to help you deal with chronic pain/chemical imbalances and lower quality of life but that can mask getting to the root cause of your symptoms that are making you depressed. That happened to me a lot and I had to tell doctors how to adjust my medication when they overprescribed multiple antidepressants at too high of dosages that made my symptoms much worse and added new negative symptoms due to side effects.
@cynthiak06 I've read all comments to your post .I suggest you see a rheumatologist and have him do blood work to check your inflammation you may have PMR .Several of us on here have this and your symptoms may point to this
Thank you for your advice. I will look into it . Hope you have a great evening.. 😊
Look at Mast Cell Activation Syndrome. There are a mass of IDs for this post Covid. The last booster set me off and it’ll be life long. I went to an immunologist and they are hard to find but a much bigger expertise than anyone else in this mess. He said they are seeing more of this due to Covid and due to shots. One of the few that would say it out loud. He ended up doing extensive deep dive in blood work like none in my life and I am now on GL infusions once a month for a for a year and my life is really returning to me!
What are GL infusions?
Yes..what are GL infusions? What does G L stand for? Thanks.
Find a Mayo Clinic near you that has a Rheumatology Clinic.
The Mayo clinic in Jacksonville got me a correct diagnosis and on the right meds.
If they only do consults then ask for a referral to an MD they would recommend. There are some less than competent Rheumatoligists out there. If its not autoimmune, first thank your lucky stars, then ask for a referral to an MD for the fibromyalgia.
To avoid gaslighting remove the depression/ anxiety diagnosis off your medical history. Otherwise you may be ignored and considered an anxious hypochondriac.
I had fibromyalgia for 20 years. I went to a naturopath for something else entirely, and she asked about my fibromyalgia. She took me off ibuprofen completely, (had me take just one naproxen sodium a day because I have osteoarthritis pain also), gave me certain vitamins, and within a few weeks my fibromyalgia was completely gone. I was astonished, to say the least!! She also did bloodwork, etc. I also still see my MD. I live in Tucson, Arizona. Don’t be afraid to try a naturopathic doctor.
@cynthiak06 You’ve certainly seen every type of doctor and hospital. So maybe it is time to try some Mayo magic. It is very difficult to get into Mayo Clinic so I suggest that you try one of their Care-Network hospitals.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
They have excellent doctors and believe in the Mayo philosophy.
Can you call one to see if they could help?