Forum Replies Created
July 16, 2012 at 10:49 am in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2624
Okay, I have had my caffeine and I can think a little. I apologize in advance if I am too direct or starting at a level lower than where you are. I am not a doctor, these are the things that have helped me.
First thing that you need is a clear head so you can advocate for yourself and do research, etc.
For me, getting off gluten (and maybe casein but that affected pain not sure about brain fog) was a biggie. Clearing your body of toxins (I am not talking about heavy cleanses – just charcoal capsules with magnesium to clear some of the normal wastes) This will help with brain fog. If you have regular bowel movements, then maybe a caffeine cleanse once a week. Discovering any allergies to determine possible sources of inflammation.
you wrote: “Fibromyalgia, along with the explanation that there was a likelihood that it could (over time) progress to RSD was reviewed with me nearly 10 years ago by a highly decorated, award winning,” What is RDS?
Then, Lyrica is not the med of choice if you have EDS (is it for the RDS?). In EDS, the pain is in the joints, etc while Lyrica attacks pain that starts in the brain. It is probably not helping much and giving you lots of brain fog. Have you considered Low Dose Naltrexone? You cannot be on any opioid and it locks up the endorphin reeptors in the brain so that at night, when your body puts out endorphins, they go right past the blocked receptors and go into your brain and bloodstream to be used by your body. The side benefit is that it may handle most of your pain. When I have breakthrough pain, I take a half of a tramdol or small amount of muscle relaxer or last choice Tylenol Arthritis. I am fortunate that I can take tramadol without getting sick. I take 4.5mg of LDN every night.
You mention that you might have dysautonomia. There are many facets of autonomic dysfunction. If you feel you are dizzy, your heart rate increases 30bpm going from sitting to standing, then increase your water to 3L and increase your salt (natural sea salt) to 3 grams per day.
Either way, you should be seen by a cardiologist who knows EDS. I was so fortunate to have found Dr. Suleman. I got checked for things outside of cardiology that were EDS related. I will post later or tomorrow, the extensive lists of tests that he ran on me. Full cardiovascular workup and even and EDS workup.
If you are HEDS, you should be checked for cardiovascular issues and since you say you have cardiomyopathy, you need someone that knows EDS and the heart. I know you know this but just want to make a strong case that you be checked and to give you strength to fight for yourself. I know how demoralizing this can be.
If there is any way you can see Dr. Suleman, I would suggest that you do so. It was a grueling 4 days of tests but I got more information about my body in 4 days than I have in 13 years. He also has some docs (not sure how extensive since I am a new patient) that are part of his little network. I just can’t say if they are well versed in EDS or not. There is a big group of his patients on dinet.org. Maybe they can tell us. I am curious. I don’t intend to utilize them much as I live about 3.5 hours away.
Have you had a full endocrine workup – preferably by a doc not trained in the U.S. Hypothyroid and hormonal imbalances can play a big part in how you feel each day.
I can’t help you with CVID and MCAD or CCSVI as I am still learning. I do know that I have started the Z&Z protocol (which my geneticist suggests for all EDS patients as a test). I feel better – less constipation and I don’t feel that my brain is swollen. Big change.
Let me know your thoughts. Don’t give up. We will get help somehow.
MartiJuly 15, 2012 at 11:39 pm in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2622
I do have some ideas but just got home and prefer to write when I am not so tired.
I think I can help clear a little of the brain fog so you can think and research and better advocate for yourself.
Will write more tomorrow.
MartiJuly 15, 2012 at 11:38 pm in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2621
Yes, I recognize your name from the DINET site. I haven’t been active over there as I am trying to track down other related disorders. So much has come of my appt with Dr. Suleman in April.
I know I have hashimotos but in the past, my RA and Lupus ANA’s were negative. I have a feeling that something has changed.
The trick is getting an immunologist to test me. That seems very hard for me.]
I had done the 23andme for my son and Dana and I were trying to figure out a connection between POTS and methylation. Recently, someone sent me a link to EDS and Methylation. Here it is:
It’s very interesting but I am not sure that I agree with all of her conclusions.
Thanks for your help,
MartiJuly 14, 2012 at 7:36 pm in reply to: Nailing down my diagnoses – finally making progress after 13 long years! #2616
I was diagnosed with CFS and Fibro and the fit was pretty good so I didn’t question it. I have been active in the CFS world since 2000. But POTS can be part of CFS and mine was getting worse so I finally gave up on the “experts” here in Houston that diagnosed and confirmed my diagnosis of POTS and went to see Dr. Suleman in APril.
He diagnosed me with EDS, gastroparesis, MVP and Tricuspic Valve Prolapse, some other autonomic dysfunction and severe balance issues that he does not think is POTS. So, yes, he pulled the pieces together and I think he is Brilliant!
Yes, I agree, many specialists are not thinking outside the box, they decide that if you have one issue, e.g. EDS, then you’re done – you can’t have anything else. Mostly, just very dismissive.
I have decided not to go to any doc unless they are a patient referral from another EDS patient. I have joined many groups/forums to make that happen!
I am also willing to travel as that will save me time, money and aggravation in the long run.
If there is any way I can help you, please let me know. You probably have more experience than I do but I am happy to try to help.
Thanks for that. I, too, see variations (even between myself and my affected children). My mother and siblings. My maternal grandmother and siblings.
Question: If I am hypermobility type, could my mother have had vascular?? Do all generations have exact same type as diasnosis?
The EDS type runs true in families – if your grandmother had vascular, you will not be hypermobile. While the types run true, there is overlap so if you grandmother had vascular, you will have vascular type but you may have some hypermobile joints. There is overlap between the symptoms but the type runs true since it is genetic. It is possible to have two types (one inherited from dad and another type inherited from mom). So, no to your first question and yes, to answer your second question.
All EDS types should be tested for vascular issues (aortic dissection) due to the possible overlap.
All of this is per Dr. Dhar – Adult geneticist at Baylor in Houston.