Autoimmune diagnosing problem

@olegraymare Hi! Very interested in your list of symptoms and signs. They are classic. For some forms of Amyloidosis, that is. And there is a class of medicine just coming out now which you will appreciate. Patisiran is one of those. Your statement about more than one doctor finding nothing wrong hit a note with me. I have known for 70 (seventy) years that something was wrong. I have gone up and down with weight, brain problems, and every organ I have left has been diagnosed with some problem or another. You can read my story free at https://bit.Ly/1w7j4j8 "Amyloidosis Dossier..." Probably 60 doctors have told me there is nothing wrong, that the lab reports were not reliable, that I was "psycho", the medicine was made in China, etc. But now I think I know the truth. I have a form of Amyloidosis. The weight loss, and the lab reports, and even a few of the doctor reports have said as much. Anyway, I think you should go to a top clinic, such as Mayo-Rochester, or Sloan-Kettering, or City of Hope. They are better prepared to handle this. In the meantime, watch and learn from their videos and other writings. Especially the Grand Rounds videos from Rochester. Ask your doctor to watch the one "What the doctor should know about Amyloidosis." And you watch it as well. And the others. Have your doctor contact AlnylamAct.com to get you into their genetic testing program. Anyway, what you describe fits Amyloidosis, especially Hereditary Primary Systemic Transthyretin Wild Type. (short form: hATTRwt). There are probably a couple thousand mutations of Amy, although we don't know all of them yet. One great book on the subject is from Mayo's Morey Gertz, MD, "Amyoidosis - Diagnosis and Treatment" It is expensive, but well worth the money. Also, Kenneth Kee has a couple, and NIH.gov has a stack or two of articles and papers. Don't rely on your doctor to be up to date. Study for yourself, and find a strong hematologist.

Hello @alwayswithgrace,

Welcome! You are not alone in your frustrations of not getting a clear answer, especially with all that your are experiencing! We're so glad that you've joined the Connect community.

Here are some discussions, where you will meet fellow members dealing with similar issues:
– Need to find out what's wrong with me https://connect.mayoclinic.org/discussion/need-to-find-out-whats-wrong-with-me/
– Need help! undiagnosed symptoms. Losing hope.https://connect.mayoclinic.org/discussion/need-help-undiagnosed-symptoms-losing-hope-1/
– Autoimmune? Or is it all in my head? https://connect.mayoclinic.org/discussion/autoimmune-or-is-it-all-in-my-head/

I'd like to introduce you to a few members from these discussions, too; please meet @hchristopher @taterjoy @lisabeans @jewel8888 @lighthouseceliac @robbinr @jeffrow @tiffmeag3 who have all written about the stress and worry of having multiple symptoms, yet no clear treatment path.

I believe the question about whether you had received a diagnosis from Dr. Levin was meant for you, @alwayswithgrace? Have you seen any other specialists for your symptoms?

Hello.  No, I don't believe that was for me as I don't know a Dr. Levin - actually, I'm getting a bit confused about all the info. I'm getting (also getting posts from people with digestive issues, which I don't have).  ??

I am so sorry for what you are going through. My story is not as severe as yours but I have been undiagnosed since 2015 with chronic pain. It started with pain throughout my muscles and joints. It actually hurt to hold hands or have my son sit on my lap. I started with my primary. After loads of blood work, I have a slightly elevated ANA so she sent me to a rheumatologist. He did a presdnisone challenge and decided it was inflammatory. I also have ulcerative colitis which has been in remission since 2012. He said I was prone to inflammatory issues. I stayed with him for 2 years. He was able to get my pain from a 10 to a 6-8 depending upon the day. I then sought out a second opinion. I went to Penn Medicine and she said since most of my blood work is normal, I only have fibromylagia. She made me stop my arava (RA medicine) and increased my amitriptyline. That made my pain so much worse but she would not listen to me. I found a 3rd doctor who not only listened to me, he wanted to get to the bottom of my illness. I did start the arava up again since I could not handle the pain anymore. He ran more labs. Everything was normal (even my ANA) except one test was positive for inflammation. He said being on the arava could have an effect on the tests. He then shut off his computer and said lets talk about how you are feeling. Back to an inflammatory issue. He has not given it a name yet but I feel like he is leaning towards RA. He added placquanil to my medication and that has helped quite a bit. It has been a long depressing journey but I am happy to have a doctor who listens and wants to help the patient rather than just rely on labs. My advise to you is keep advocating for yourself and keep getting more opinions. As hard as it to find time to see more and more doctors, it is important you keep going until you get an answer.

You are fortunate enough to get someone in the Medical industry to even take you seriously in only a few years. It took me five years to get a tentative diagnosis of Fibro. It started with a car accident in which I was not seriously injured on the surface, but two weeks later I was having to crawl to the bathroom.
Amitriptyline knocked me out and I gained 15 pounds in two weeks (water weight).
The only thing I can really pass on at this juncture, 27 years later, is that Anything that the medical industry prescribes is more likely to Hurt you more than to help your condition. Rigorous self examination (charting foods, sleep patterns, flare occurrences) provides valuable information. Acupuncture, gentle movement: water activity, restorative yoga, tai chi, helps.
Sleep is the key. Real sleep, not drugged sleep.
I will amend my harsh statement about No Meds help with one thing that did help - HGH injections. I had HGH for two years and all symptoms remised.
But try to get a Dr. to give you that these days.
They have drugs that will help - performance enhancing drugs that athletes use. Why can't we get those?
Sorry for the rant. But don't expect a Dr. to help very much. You got to help yourself!

It was a blessing to find this doctor. I did discuss my choices with people I have met during my aqua therapy sessions. They gave me this guy's name. I agree that the medication does have side effects. I have tried vegan and gluten free diets but it did not help my pain at all. I have also tried holistic medications. Amitryptilne is the only medication that has helped my migraines to stay away. I do agree that we have to help ourselves and find what really works. What works for me may not work for the next guy. It is a constant battle but there are some good doctors out there that are willing to treat the patient.

I know that your blood can be filtered. Like they IV it out of you into some machine and IV it back into you simulanteously. Serious drug addicts (like rich Rock Stars) have it done to get clean. Would that be a possible treatment? Did the Drs look for Lyme?

@brie87144 your experiences and condition are so very sad to hear about. First, I have to say, with your parental/family/work obligations, it is truly astounding that you have been able to hold it together despite feeling so awful, so long, with no clear diagnosis nor obvious path to recovery. I pray that you WILL find the help you need, and recommendations for next steps, and recovery. I noticed in your list of specialists consulted there was no mention of a TOP infectious disease specialist. Because your first symptoms began after a viral infection, I wonder if you might have 1) a RARE viral infection from the start, OR 2) a secondary infection set in after the first "infection," causing the ensuing "pins" sensations, balance issues, bladder issues, and sensory and balance/stamina malfunctions.

If you could possibly have Lyme disease--or any infectious disease that is even more rare--maybe a TOP infectious disease specialist could help rule in or out causes, and recommend treatments. There are many many rare infections that can throw our systems into disarray. Here is a list of "rare" viral infections (seventeen pages of various types, with short descriptions, & links) https://rarediseases.info.nih.gov/search?Keyword=rare%20viral&page=1 This list might not be exhaustive. The same site provides a 72 page list of "rare bacterial" bacterial infections, short descriptions, and links to more info. https://rarediseases.info.nih.gov/search?Keyword=rare%20bacterial%20infections&page=1 Again, this list might not be exhaustive, but maybe you could copy/carry it to a consult with a TOP infectious disease specialist, to determine if ANY might be responsible for your symptoms, and if there might be a treatment that could help with a cure or at least improvement of your symptoms and quality of life.

I, too, am so sorry you are going through this, not only for the frustration, pain, sensory loss, risky balance/stamina and uncertainties you are experiencing, but also for your family who also probably feel helpless as to what to suggest. I will keep you in my prayers, and hope that helpful resolution is within reach. Please keep us posted.

Hello @olegraymare -- I think you may be getting confused because the discussion has more than one thread going on between different Connect members. When you are reading the discussion if the post addresses a specific member they will usually be tagged at the start of the post like this one. When you read this post in the link below it was address to a different Connect member and then when you responded you didn't know Dr. Levin, I compounded the problem by saying I read it in your post and I didn't. I read it in the post of the person I had originally responded to. So we just mixed a couple of thought trains together and made chicken soup. I apologize for not seeing that sooner. Here's the original post I was responding to:

If you are getting too many emails you can click the unsubscribe in the email that gets sent to you or you can go to your Profile at the top right part of the screen and click Account Settings. Under Account Settings you will find Email Notifications where you can click the Edit link and disable any notifications you do not want to see.

John

Yes, that makes it clearer to me now. It was starting to remind me of all the mail I get from companies I have ordered from on-line : 0