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Everything posted by KiminOrlando

  1. I have had an itchy rash since Christmas. It gets better with prednisone, then I stop the med and it comes back. I can't figure out what is happening. It flared up massively yesterday. NOTHING changed. I literally only ate leftovers and iced tea from the same container. No new soaps, meds, fragrances, nothing. I'm starting to wonder what Mast Cell Activation Syndrome is like and how you can tell if you have it. I have an autoimmune disease so I already know my immune system is whacky. Any thoughts or advice? I'm losing my mind and I have comandeeered a spaghetti spoon with all the plastic fingers as my new back scratcher.
  2. My heartburn was from gastroparesis. I got meds for that and my heartburn became manageable with omeprazole. Good chance you have some percentage of gastroparesis and until that is considered, the acid reflux will remain. I used to get acid reflux from drinking water too. What a miserable feeling...
  3. Ok. This is a stupid question and one I don't fully understand how to ask and what I am saying, so I hope someone smarter than me reads this and can fill in the gaps. I had a massive allergic reaction to getting my hair dyed yesterday. Now I am taking the max dose of Benadryl. I'm so jumpy I can't sit still, yet I'm so tired I don't want to move. My body feels so nervous. I'm hyperPOTS, but now it feels like everything just went beserk. This stuff is supposed to make you sleep. So I did some research and found this happens to people with a defect in their CYP2D6 gene. It causes a problem with an enzyme that the liver makes or something and it interferes with converting to dopamine. Do any of you have trouble with Benadryl? Do you know if there is any link or study about this gene and POTS? I know I have a problem with dopamine. I know Northera is droxy dopa. That converts to dopamine, right? Is there some link between this gene and POTS? Maybe dopamine plays a bigger part in running our bodies than I realized. No wonder I feel bad.
  4. I have vision issues randomly. I am told it is neurological. Some of it is an ocular migraine. Rest makes mine better. Computer screens make it worse as does stress and fatigue.
  5. They haven't given me anything. I am going to talk about this at my next doctor visit. I would probably only take it at night because that is my worst time unless something out of the ordinary happens during the day. I purposely lead a low-stimulus lifestyle. Anything else is exhausting.
  6. How do you get prescribed diazepam? They treat it like morphine down here. You can't have it. At least, I can't get it. I have had to cxl MRIs because they wouldn't let me have one. I am hyperpots and all the noise and closeness of an MRI sets me off.
  7. Florinef also causes low potassium. Not sure if you are taking it or not. My doctor put me on prescription potassium supplements and I have been able to maintain a steady level now.
  8. I really think you need to get referred to Vandy. Good chance your IC is from dysautonomia or at least, it is all related and the rest of it is disease progression. I know you said no more travel, but Florida offers no good options, imo.
  9. I got the implant in my arm so the hormones stayed consistent. It helped TREMENDOUSLY and kept me working a few more years. I don't know if you have that option. I would try the pill first to see how it goes, but with no off week.
  10. Could the calf muscle have been small fiber neuropathy? Could the chest be costochondritis? Look them up and see what you think. Any autoimmune issues? Sorry this is happening. We never know what is real or not.
  11. I go to MUSC in Charleston. Unfortunately my POTS doctor is no longer seeing patients and is in the process of hiring a new doc. He is going in to research and will be overseeing their new autonomic clinic. I don't think they are taking new patients at this time. I see him for the last time next month and will hopefully get an update with better news.
  12. They put me on Topomax because it had an off lable use for this. It isn't great, but I can tell when I don't take it. You might ask your doctor to research this. The med is normally used for seizures, but I don't have seizures. Just a thought.
  13. I think it is progression of the disease. I started this about 2 years ago. It was explained to me that my 'master control' is broken. If you figure out more, let us know.
  14. Did you see your bloodwork? I think elevated D-dimer is a symptom of blood clots. I was in the ER one time and my D-dimer was elevated and they did a ton of imagining because my O2 was a little low. They didn't find anything. I hope they find out what is happening with you and that you don't have to be on blood thinners. Please keep us posted.
  15. There are very few GOOD Rheumatologist. Even fewer of those who can understand how dysautonomia mixes with autoimmune. I drive 6 1/2 hours to see mine 2x a year at an out of state University research hospital. I had to change PCPs to get there. I also had to ignore the advice and diagnosis in multiple cases. Glad I did.
  16. I said the same thing until one of my drugs was $50,000 a year. Hopefully you can get in on that grant. Let us know if this works.
  17. I think it is a dopamine inhibitor. Hope someone with actual knowledge speaks up though. This sounds interesting. Does it smooth it out so it inhibits spikes or just supress it? Sounds like the opposite of Droxydopa (Northera). Is he using it as an off lable? Did your insurance approve it?
  18. Do you know if he believes in sero-negative diagnosis? If he doesn't, then your bloodwork was a deadend before you walked in. Knowing that a doctor doesn't believe in making those diagnoses lets you know what you are dealing with. Sorry you had a bad experience. I had a couple too before I found one willing to diagnose without positive bloodwork.
  19. Ditto what @toomanyproblems said. My doc gives me a script for steroids and I take as much as a need when I need them. He trusts me to figure it out day to day. Autoimmune diseases with hyperPOTS is tricky. Buy a BP machine just to keep an eye on things. What happened with me (usually), is that the better my autoimmune disease is doing, the better POTS is doing. Maybe that will happen with you. I ended up on DMARDs for autoimmune so that I don't have to use steroids as much. Hopefully you get good results from the steroids and they can move you to DMARDs with steroids for flares.
  20. Ask them if they diagnose serum negative autoimmune diseases. A significant percentage of RA and lupus and probably other patients never test positve with their bloodwork. They get what is called a 'clinical' diagnosis. That means, if it looks and acts like lupus, they call it lupus. There are also nebulous categories like Undifferentiated Connective Tissue disease and Mixed Connective Tissue disease. Do they diagnose those? With your test results you may start out with Undifferentiated Connective Tissue disease until something develops further. If they diagnose like that, do they treat it? Some places won't give you meds until your bloodwork is positive. It took 10 years for my bloodwork to be positive for RA, but I was lucky and got meds anyway. The RA meds have helped me tremendously. Do some research on this so you can go in with information on 'beginning' or 'almost' autoimmune diseases. Those are my terms, but it seems to fit many people I know. Good luck. I hope you get a progressive doctor who is willing to look at more than black and white.
  21. Mayo wouldn't do a standing MRI either. See if a regular doctor will order it. I got mine done locally and brought it with me to another specialist. The supine MRI at Mayo was fine. Turns out the standing one with flexion showed instability and compression. A well published neurosurgeon recommended surgery. I am a staunch believer in standing MRIs for dysautonomia patients.
  22. Yes, calf muscles are the pump, specifically the Soleus muscle is what I am told. I think it is particularly difficult to isolate and work it. Have you consulted a PT? Maybe just one or two visits can help you learn what to do at home.
  23. Went to the Oncologist today for my IV biologic that I take for my Rheumatoid Arthritis. He went over my blood work. My Free Light Chains were already elevated, but they have now doubled. The ratio is still ok, but he doesn't like it. Also my IgG is way elevated. He wants to do a bone marrow biopsy because he believes something isn't right, more than my RA. I had a lymph node biopsy of my right axillary lymph node in March of last year due to enlargement and pain. It came back clear, so by exclusion, they diagnosed me with lymphadenopathy. Now they are second guessing that. Anybody having these problems too? They still play around with my diagnosis. It is 'some type of dysautonomia'. It has been Pure Autonomic Failure, then not. Then they suspected EDS3, still not sure. Also suspect TTR Amyloidosis, but can't find proof. Honestly, they wouldn't be surprised to find out that I have some type of autoimmune dysautonomia that doesn't have a name yet. The meds I am on for RA suppress my immune system, so cancer has also been suspected to a degree. These types of blood test results always start a small panic. Does anybody else have high Free Light Chain numbers but ok ratios? What is your diagnosis? Do you also have elevated IgG? Frustrated and tired of being everybody's lab rat. Trying to remember to be grateful people are doing their best to help me. Not everyone is as lucky. It took years to get someone to take me seriously.
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