Katybug

There are docs on our physician list from NE and CO. You might want to check them out to see if you've contacted any of them. http://dinet.org/index.php/physician-list?view=physicians

Hi. I haven't been to the big clinics. I'm not sure who you're currently seeing but Dr. Abdallah is in Reston, VA and has a good reputation. I see Dr. Khurana who is a neurologist with a specialty in dysautonomia and he has an office in Columbia, MD. They are both on our physician list on the main website if you want their contact information.

Hi artluvr, I do get GI spells just like you are describing but I have had them for a while and know that they are probably due to my mast cell issues. There are certainly other things that can cause this kind of GI upset. If this isn't normal for you, you might want to call your regular doc to make sure there isn't something going on like a stomach virus or food poisoning. This kind of GI problem can cause dehydration as well, so when I'm having this issue, I have make sure I take in extra salt and fluids to stay hydrated. Hope you feel better soon. Katie

Hi Lisa, Many of us will make it to the end of your post as we share similarly long stories. I'm glad you have found our community. I have found so much support here, in addition to useful information, and the support has kept me grounded. So, one of the hardest things for me has been the up and down emotional roller coaster of hoping for answers, getting none, finding a new doc and doing it all over again. I am dxed with POTS, EDS, and MCAS but I have some other extraneous issues that aren't really explained by these diagnoses. So, after 9 yrs of docs (I stopped counting after 30 docs), my current medical team and I have decided I need to revisit ID, rheumy, and a rare third possibility. So, off to more new docs I go over the next few months. I think, for me, the key to keeping my sanity has been to learn acceptance and bestowing kindness on myself. I accept that this is where my body is and that's just that. However, I do believe I need to advocate for myself and so I will continue to see if we can answer these last few questions we have about my symptoms. I am in a place where I realize that there may not be answers. I am lucky to have finally found docs in the last few years who are smart, utd on research, honest, and compassionate. I certainly went through a number of docs who were the antithesis of compassionate and they were fired. In my opinion, it's up to you how hard and for how long you search for more docs/treatments, etc.. It's a very personal decision and there have been a couple of times when I had to take a temporary break (2-3 months) from doctors for my own mental and emotional health.....like stopping to catch my emotional breath. Hang in there! We will be here to help support you! Katie

First, thank you for the feedback on your doctor receiv8ng our information! It's really important to know that we are reaching some docs. As for compression stockings, I can not manage the traditional compression stockings because of the joint issues I have in my hands. I use some that are more like sport sock material as they are easier to get on and off. I don't feel that the compression is quite as heavy as the traditional equivalent but they get the job done for me.

Sent you a pm.

I have not seen Dr. B Oris but I am the person who had contact with him to put him on our physician list. He actually contacted us and asked to be put on the list. He was very pleasant to communicate with. At the time, which was a year ago, he actually asked me if I knew anyone in Philly for adults as he gets the question frequently. I wasn't able to give him a name. However, it may be worth contacting his office as he was on an active search to find a doc to refer adults to in the area, so maybe he has found someone. In the meantime, my POTS neuro, Dr. Khurana, is in Baltimore. I know that's not around the corner but it is a doable day trip from Philly if you can't find anyone closer.

http://forums.dinet.org/index.php?/topic/27527-dysautonomia-and-concussion/

You may want to consult a cardiologist. There are other things that can cause low heart rates that are dangerous and need to be ruled out before assuming this is a benign dysautonomia issue. We have a member that recently needed a pacemaker implanted due to low heart rate. My mom had to have an emergency pacemaker implanted 2 years ago for low heart rate.

I'm glad you were able to get a clear diagnosis! As Sarah mentioned, we're all different when it comes to meds. I had the opposite experience from her....I had no side effects from metoprolol but was like a zombie on propanolol. As she said, if one gives you side effects, there are others to try. Also, I am way more fatigued when my heart rate is uncontrolled. My cardiologist actually reminds me that it's normal to feel tired if your heart is in aerobics class all day long! You may get some relief from the fatigue after a few days of your heart not working so hard.

Welcome to our community!

TCP, Have you tried braces for the joints that are particularly troublesome? I have braces for my ankles, knees, wrists, and a neck collar. I don't wear any of them all the time. Sometimes my ankles will start to hurt and wearing the braces for a week or so stabilizes the joint enough to allow the soft tissue to heal. Same with my knees and wrists. I also had a problem for a bit with my sacro-iliac joint locking. The physical therapist taught me how to unlock it. I have a brace for that too.

Oh

The chiro meant the adjustment causing dizziness could be because the adjustment caused nerve or vessel impingement. I guess my concern would be the machine making it worse. Do you have insurance? The upright mri was covered just like a regular mri was for me with Medicare.

Navyblue, Congratulations on getting your degree! I was just saying to my mom today (who is actually completely supportive) that I don't think anyone understands what goes into getting to a doctor's appt or going to the grocery store. The planning, the prep, the backup plan, everything you don't do to make sure you can do the thing you HAVE to do, the fluid loading, the compression gear, the layering of the outfit to adjust for the chills and the hot flashes, do you need to eat and when and what. It's really mind boggling.

Amalia, I don't know if you have to increase it slowly but my neuro had me do it slowly. I did an increase every 2 weeks as long as I didn't experience any side effects, which I didn't.

I haven't tried this treatment nor do I know anything about it. But, I really want to encourage you to consult with a neurosurgeon and get an upright mri ordered if you feel like there is something going on with your neck. My old chiro said you should never feel dizzy from an adjustment...that is a sign of nerve or blood vessel impingement. This is such a delicate and important part of your spine. The atlas adjustment could even affect your brain stem. Please be careful.

I'm sorry about your Dad, Amalia. If it's any consolation or back up, I was on a rather high dose of amitryptiline for migraine prophylaxis. It did not fix all my problems and specifically it did not alter my mood or Outlook on life in any way (because that's not what my problem is.) Keep your chin up.

Take pictures every day.

By definition, to diagnose POTS, there needs to be a 30 bpm change within 10 minutes from supine to standing, or, tachycardia of 120 bpm or more within 10 minutes of supine to standing. However, POTS is only one form of dysautonomia and there are many others. Not having POTS doesn't mean you can't have a dysautonomia diagnosis. For information on other types of dysautonomia, you might want to check out our main website. You will find clarifying information there. Take care, Katie

I know it's frustrating. Just keep your chin up and keep working at it. You are your own best advocate.

Also, immunologist or hematologist might help with MCAS, depending on their individual interests. However, mastocytosis generally requires a hematologist.

I think what you are referring to would be cutaneous mastocytosis. That has a different origin than MCAS. Mastocytosis is an overproduction of mast cells and MCAS is a dysfunction of a normal amount of mast cells. It is important to be diagnosed properly between the two and they are treated differently in some respects and the implications of the disease processes are different. The Mastocytosis Society has a pretty good website if you haven't found it already, so you can find more information and resources.

Mastocytosis is a different diagnosis, although similar symptoms, from MCAS. If there is reason to believe that you have actual Mastocytosis, in any form, that should be evaluated and ruled out before assuming you have MCAS. That's important. Mastocytosis is an overproduction of mast cells. MCAS is dysfunction of a normal amount of mast cells. There are differences in treatment and the implications of the disease processes. I would guess that the reason you aren't seeing how it started for people is because it is an illness that is so different from one person to the next, just like POTS. for example, I'm not sure when mine began because the symptoms overlap with POTS and EDS symptoms. I've had severe environmental allergies since I was little. I also had mild but chronic hives and rashes throughout my life but never to the point it was a problem before. I started having GI motility issues as a young child. I honestly don't know which of my diagnoses were responsible for these lesser versions. My search for a cause of my POTS led to my MCAS diagnosis but it doesn't explain all of symptoms.

I was on florinef when I trialed Midodrine.