KiminOrlando

@CallieAndToby22 Is the scientist working on LDN at UAB in Birmingham? Do you happen to know their name?

Just wanted to give an update... my Immunologist has tentatively made a clinical diagnosis of Mast Cell Activation Syndrome for me. The meds made my interstitial cystitis better, my migraines, my rashes, my lip swelling, and my breathing is better. I had an 18% increase in airflow on my last PFT. I'll be following up with him in 2 weeks with the PFT data so he has something that isn't subjective to back up his diagnosis. Thank you for the help.

I agree. The answer is no. My first cardiologist put me on a tilt table. I fainted. He told me to eat more salt, drink more water and exercise. This was considered diagnosed and treated. It didn't help at all. My chart had this resolved. So did my insurance company. Unfortunately, my body did not agree. It took 20 more years of struggling to break out of it. I advise to wait for someone who really knows what to do.

Congratulations. Yes, you got very lucky that the expert understood what dysautonomia was, how it works and stuck to his guns that it was outside of his area of expertise. Getting stable finances and insurance is the first step in being able to rest and start recovering some of your life. It will not be quick. Give yourself time and grace.

Be sure to mention that when you are at Mayo. It sounds like you need to see a Rheumatologist. Only a Rheumatologist can rule that stuff out. Bloodwork is only part of the story. I have an autoimmune disease and my bloodwork was negative for years. I was diagnosed with sero-negative Rheumatoid Arthritis. Two other Rheumatologist said I didn't have it. I found one to look at everything and make a clinical diagnosis. A couple of years later my bloodwork turned positive, but it was clear that I had needed the medication years earlier. Primary care physicians aren't equipped to make clinical diagnosis. They typically go straight by the book and most people don't fit textbook cases. I hope Mayo is able to help you.

There is a link between dysautonomia and autoimmune diseases. Bloodwork doesn't necessarily mean that you are negative. The doctors should really biopsy those spots to see what it is. Psoriasis and Psoriatic Arthritis are both possible, and it sounds like you are on the right track by having someone at Mayo check things out. Are you having any kind of joint pain or inflammation or is it just the lesions?

My Rheumatologist, Immunologist and Oncologist (Hematologist) all recommended the shot for me. They specifically recommended the Moderna shot for me. It is unfortunate that your doctors won't make a recommendation for you.

My d-dimer is elevated too. They don't know why. They are watching it. It has been years.

@KnellieRead through these and see if this helps.

Do a search on 'mast cells' in this group. There is an excellent thread. There is a search feature at the top.

I think it can cause a flare in Mixed Connective Tissue disease and Undifferentiated Connective Tissue disease. Depending on who you talk to, I have this. Sun messes me up.

I think your family was out of line. You don't have to cover it. Illness and medical devices should not scare children. They just need to have it explained to them and they are generally ok. Adults set that tone. I have used a wheelchair off and on for 15 years. My family was ok with it. My mom is more horrified and unwilling to accept my weight gain. You didn't do anything wrong. Don't let them keep you from seeing family.

@CallieAndToby22 You may be a very different story. You should definitely check with your doctor.

I had one dose of Moderna and I was fine. I have Mixed Connective Tissue Disease and HPOTS. Oh and some kind of mast cell "issue".

My nephew has this. He had to see a neurologist and then a neurosurgeon to remove the blockage. Evidently, they can escalate and cause permanent issues. Pain was part of my nephew's issues as well as headaches. Please call your GP and get in with them ASAP. If they do not refer you to a neurologist and then a neurosurgeon, please seek a second opinion. It is going to be ok, but you need to get this taken care of. I'm glad they found it.

@CallieAndToby22Thanks. That is good to know.

Because it was. That is really all I get from my doctor. It is frustrating. I think it was a blood test. I didn't do the 24 hr urine because I wasn't sure insurance would pay and I read it needs to stay refrigerated. I was supposed to do it through Quest. Quest does not refrigerate their samples because they say it is unnecessary. I decided my test would be invalid or give a false negative, so I didn't do it. It concerns me Quest doesn't do this test correctly. Xyzal is an OTC H1, so I am on an H1 and H2 in addition to Singulair and the Naltrexone. My doctor says it only comes in 50 mg tablets and I was cutting it in quarters, but now I'm cutting it in 1/8ths. I also take OTC Quercetin. I really feel like this doctor means well, but doesn't have any experience with dysautonomia. Because I also have autoimmune diseases, I think they are trying to blame that. I'm betting that they are barking up the wrong tree.

I have some kind of mast cell issue. Doctor ruled out MCAS and won't call it MCAD. People with mast cell involvement, does it impact your bladder? I have Interstitial cystitis and the meds seem to be helping that. Does it effect your lungs? I have Interstitial Lung Disease. My O2 levels randomly drop to the mid 80s and they can find no reason. They can't catch it to run tests. I'm so dizzy and out of breath today. O2 is hovering around 90. Does mast cell stuff effect the digestive tract? I am on Xyzal, a prescription H2 blocker (can't remember), Singulair, and Naltrexone. I was taking 12mg of Naltrexone and it even stopped my night sweats, but made my POTS worse. Does Naltrexone make your POTS worse? I now take 6 mg, but night sweats, bladder issues and breathing problems are back. POTS is now better enough to struggle through a shower with the help of a shower stool. Was having to get out with shampoo in my hair and lie flat for 30 minutes. Haven't broken out in a rash or had lips or tongue swell, so that is also improved. Sign me... Huffing and puffing in Orlando

Exactly @yogini. The link lists several reasons for cloudy urine and suggests discussing with your physician. The most common with us is dehydration, but it certainly doesn't eliminate the others or the more rare ones not listed.

@Eddie_PA I am taking Gabapentin which is the generic of neurontin, I think. I was on Lyrica until it made me gain a bunch of weight. It makes the burning manageable most of the time. The tingling is still a problem. I also have Reynaud's Phenomenon and craniocervical instability so the doctors try to blame it on each other's specialty.

@CallieAndToby22Birth control pills helped me tremendously and additional hormone patches to shorten my period also helped.

@dizzytizzy My advice is to get a new Rheumatologist. Plaquenil is used for many more things than just RA. Lupus is the big one and what made the news during the whole hydroxychloroquine controversy. It sounds like your Rheumatologist is old school and not up on the latest in Rheumatology or just not really interested in your case. If you can find a good one and they will consider your symptoms and your old ANA being positive, they may look at starting other meds like Imuran or Methotrexate. Your pituitary issues may somehow be rolled in to this mess and further treatment for autoimmune immune may help. It helped me. Keep plugging away at it. Don't give up. I really think you are on the right track.

@Muon This is where I found it. It is the second reason down. https://www.webmd.com/a-to-z-guides/cloudy-urine-causes

My guess is the fact that you had one positive ANA probably means it is autoimmune but with commitment issues. More than likely it will pop positive again, but nothing specific will show for a diagnosis. This happened to me. They initially suspected MS. It took several years and several hospitals to find my diagnosis. My diagnosis is currently Undifferentiated Connective Tissue Disease. Some Rheumatologists don't believe in giving that diagnosis. Some don't believe in sero-negative autoimmune diseases. You may have to give it some time and let things develop. I too had a well respected hospital initially decline to diagnose me with autoimmune. I ended up at a university hospital that had a nationally ranked Rheumatology department. They were more interested in making a clinical diagnosis as opposed to relying on bloodwork. All I can tell you is these things take time and I know that is hard to hear. I have the tingling and burning too.

It is a symptom of dehydration and since many of us have hydration issues, it could be related to that.