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Everything posted by KiminOrlando

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. I drink fluids and it goes right through me. The same with IVs. I wish I knew how to keep fluids too. I take florinef and salt pills.
  7. Good vent. You are not wrong. People who aren't sick much more than an occasional cold cannot comprehend life altering illness. I think well people get caught up in their routines to the point that they just can't deviate or everything falls apart. They over schedule themselves in an effort to compete with friends to appear successful. We build in so much flexibility because our bodies aren't dependable. We don't look sick. It is interesting that none of them stepped up to fill the job you used to do. Are you on disability? I am, so people who are supposed to be knowledgeable have adjudicated me 'sick'. I have taken family with me to doctors. I have passed out on them and messed up their schedule. Nobody really thought much about it until my Uncle got cancer and went on chemo. I take a low dose chemo for autoimmune diseases, so I started talking to him about Oncologists, ports, nausea meds, and white blood cell counts. Everybody was shocked I had been dealing with it for 10 years. I think they think we are just tired. Until they learn. I had to write up what my typical day is like for a disability review. Despite doing very little, it was 4 typed pages. I sent it to some family and 2 close friends to proofread. They were stunned. STUNNED. I think what we go through is just beyond most people's comprehension. Very few people even realize what the autonomic nervous system controls. Hang in there. At least you have a good husband. Maybe they will start to see what you really do all day.
  8. @Pistol Nobody else smells it. They think I am loosing my mind. If it is some kind of new Migraine, can they last for a week? I have had this happen before for 10 minutes or whatever, but never worried about it. Now it hasn't gone away. @Hen's Teeth Stress response, hmmm.... I guess that is possible. Although my stress level has been elevated for the last 18 months. Now that you mention it, my symptoms seem to have progressed in other areas in the last 18 months.
  9. What meds are you on? Meds helped me. I still get fatigue. I still rest a lot. I no longer work. There was a time that eating was too exhausting. I know that feeling.
  10. @JimL I do have Hashimoto's hypothyroidism. Curious how that can interact with smell. Sounds like I may need to book a check up with my ENT and send an email to my endocrinologist. I already have an appointment in August. They book 6 months out, unless you convince them it is an emergency. @toomanyproblems Glad to know it has the possibility of going away. Maybe next time if I could smell flowers or lemons instead of smoke this new trick would have been better received. It would be nice if just once one of these quirks would be fun or enriching. At this point, I would settle for convenient.
  11. No. No infections or colds. No increase in frequency of my normal headaches. I do have chronic nosebleeds and have since I was a child. No increase in frequency or severity since this started. The cartilage dividing the inside of my nostrils is missing due to an autoimmune disease. My ENT called it 'lupus nose'. Can't imagine that has anything to do with it, but I also didn't imagine there was such a thing as 'lupus nose' either. I will look up olfactory hallucinations. This does not sound like a fun adventure. Thanks.
  12. Ok. Weird question which is saying quite a bit in this group, but... I have started constantly smelling smoke. There is no smoke around me and it has been going on for days. I can smell other stuff too that are real, like bacon or lemons, etc, but only when they are there. The smoke persists around the clock. Is the autonomic nervous system involved in smell? At this point I am pretty sure my brain is tricking me, but why? I have intermittent headaches, but not migraine level so far, although I do get migraines. I also suffer from ocular migraines, but haven't had one with this yet. Any ideas? I have been spraying Febreze and opening Renuzit air fresheners. Now it just smells like Ocean Breeze and smoke. Thanks.
  13. Then I would trust your primary. Especially if you are trying to get disability. He sounds like he has some experience with this.
  14. I think all of us are that. Challenging as in they don't know what to do yet. By the time we get to Vandy, Mayo, Cleveland Clinic, etc, we have been through quite a bit and think we are someplace where we can get answers. I know I go in armed with a list of questions. Pretty sure many docs would prefer that I just sleepwalk and blindly follow, but I look at it as a collaboration. Just smile and think, 'Yes, I'm a challenge. Hope you're up for it.'
  15. I got sick with POTS before ever getting the flu vaccine. Since getting POTS and autoimmune diseases I have started flu vaccines for 15 years. No problems.
  16. Then I am out of ideas since you already chased down autoimmune too. I hope you figure it out.
  17. Look up small fiber neuropathy and see if this is what you are feeling.
  18. You have TERRIBLE timing. MUSC in Charleston was in the process of opening a POTS Clinic, but the physician has had to decrease his workload due to personal reasons. They are looking for a replacement currently. I don't think they are taking new patients. The original doctor is VERY good and will be VERY picky about his replacement. He will still be involved in the operations and research side. Hoping they have answers soon. You can call them and see if they have someone they would recommend unless they have found a doc since I last spoke to them. Call their Cardiology department and ask the scheduler about the status of the POTS clinic.
  19. I have many of these too including breaking ribs by coughing. My cardiologist says I almost meet the criteria for EDS, but not quite. He also told me IF I had EDS, it would be type 3 which is not detected by a geneticist. He isn't pursuing it. He said they would only be able to treat the symptoms anyway, so it really didn't matter, but I think it does. My insurance company cares because diagnoses are used to determine what is covered. Does your doctor think you have one of the EDS types seen on genetic testing or the other kind? EDS Type 3 can also run in families, I think. I hate to say it, but you sound like you fall in that nebulous category that many of us fall into and are still waiting for answers. I hope you are the exception and get some.
  20. A little off topic, but are they willing to try Domperidone for her gastroparesis? It is not FDA approved and would have to be compounded, but it helps me tremendously. It would only treat symptoms until they figure something else out. It sounds like you have a good doctor. Please keep us posted.
  21. What are your standing norepinephrine levels (bloodwork)? They may not have run this test. If not, ask why. It will tell you what they are focusing on. This is some of the bloodwork they do on the TTT. You can also do it by simply standing without moving for 10 minutes. If you pass out, it invalidates the results. If your norepinephrine is low, ask if there is something that they can do to increase it.
  22. I also have an autoimmune disease so that in combination with dysautonomia and Hashimoto's thyroiditis is what did it. I just had to requalify with a full and complete re-evaluation process. It was an 8 month process and I was slated to see a Social Security doctor for an examination.
  23. My doc does this every visit. Poor man's TTT. Wants to know how your BP and HR respond.
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