At a loss, multiple consultations still no answer...any idea?

@lacy2 I think it’s a Canadian thing - I too have trouble speaking up. lol. But in my case, I’m dealt a double whammy because I also come from a cultural background where I was raised not to question those “in authority”.

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Do yourself a favor, @change25..... take some deep, cleansing breaths, blowing out your mouth slowly. Do this several times. Allow your muscles to relax in your face and head and neck, then shoulder, and go down the muscles in your body. Do this and other relaxation, mindfulness exercises. Listen to calming, enjoyable music. Do some good things for yourself. Ck out the What's outside your picture window..... and, ck out the various groups discussions to see if there is something you might find interesting, helpful, fun. I think you've done an excellent job doing research with Connect and met some folks who can really help with your questions. But, I think you have a plan now and the best for you to do is relax a bit, change your focus from fighting for answers, to learning to deal with my body as it is. Not to say it won't get better! It may well get a lot better as you travel along this path, but it's important you us to learn to deal differently as we go into the chronic illness part of life or at least a different lifestyle.

I found a youtube video by the psychologist in charge of the Mayo Florida Pain Rehab Clinic. They work with patients to help them learn various techniques for pain control and to help get your life and mind and body in sync. They guide you to understand what part your brain plays in all the different areas of your body that are declaring war. Ck out cognitive behavior, central senstization videos from dr. Sltetten. @rwinney, another patient, attended the clinic and posted some interesting comments.

I'm not suggesting you need to attend the clinic, although it may prove helpful in the future, but more than that we all need to look for ways to improve our thinking about our illnesses, our bodies and the way we are right now. Acceptance of ourselves with these changes is very important to begin the healing process. You can't be at war with yourself and expect to be calm, at peace, in healing mode or acceptance if you're fighting all the time....I've been in the fight/flight mode most of my life, trying to make this body behave! Well, that isn't how it's done, so I've been fighting and making my body worse and certainly making my attitude and thinking less productive.

So, maybe it's time to take a step back, think quietly about these issues and move gently forward to find what right and best for you. Then, soon, you'll have the bloodwork tests back. you and your doctor will sit down and chat and you'll get his input and opinions. Then, next step, is dependent on what he says. I suggest he may well refer you to a rheumatologist as you requested, or a neurologist, depending on the test results.

If you take these days to begin to learn how to work on your thoughts and brain to improve your health, you're begiing the healing process before seeing the doctor who will work to help you heal!

Get going and change yourself for the better, begin healing and get on your way. @colleenyoung and @rwinney and @ becsbuddy, @gingerw, @sueinmn and so many others are here to help guide you to the place of dealing with your life well, of healing..... You will find answers from the upcoming bloodwork and this doctor, and from whomever he refers you to see, and from all the folks on these sites. Now you are learning how to live and heal. Blessings on this journey...elizabeth

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Very well said, thank you. Since my symptoms have progressed I've definitely noticed a change in my behaviour... I've become withdrawn and depressing to be around. I suppose it's only natural to question why it's happening to you. But, that's life. Where there are those going through far worse than what I'll ever endure. I will take your advice on board and accept my situation. I will begin planning things to look forward to along with listing reasons to be grateful. Hopefully, this will shift this depressing loop I'm stuck in which in turn may improve my symptoms.

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Yeah! Do ck out the links I mentioned. You will get a message probably from @colleen young and @rwinney with information about the behavior issues I mentioned. These are so important for us so we can deal well with the changes in our lives. I hope you will find these links and others will lead you to a life with some joy and a lot of understanding of the entire process and to a better future.

Then, in a couple of weeks, you'll get the bloodwork information and be on your way to finding answers.

Sounds like a plan? Keeps you from dwelling solely on the yucky things happening and the way you feel.
Hope it helps you on this journey. Blessings, elizabeth

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Yeah! Do ck out the links I mentioned. You will get a message probably from @colleen young and @rwinney with information about the behavior issues I mentioned. These are so important for us so we can deal well with the changes in our lives. I hope you will find these links and others will lead you to a life with some joy and a lot of understanding of the entire process and to a better future.

Then, in a couple of weeks, you'll get the bloodwork information and be on your way to finding answers.

Sounds like a plan? Keeps you from dwelling solely on the yucky things happening and the way you feel.
Hope it helps you on this journey. Blessings, elizabeth

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Do yourself a favor, @change25..... take some deep, cleansing breaths, blowing out your mouth slowly. Do this several times. Allow your muscles to relax in your face and head and neck, then shoulder, and go down the muscles in your body. Do this and other relaxation, mindfulness exercises. Listen to calming, enjoyable music. Do some good things for yourself. Ck out the What's outside your picture window..... and, ck out the various groups discussions to see if there is something you might find interesting, helpful, fun. I think you've done an excellent job doing research with Connect and met some folks who can really help with your questions. But, I think you have a plan now and the best for you to do is relax a bit, change your focus from fighting for answers, to learning to deal with my body as it is. Not to say it won't get better! It may well get a lot better as you travel along this path, but it's important you us to learn to deal differently as we go into the chronic illness part of life or at least a different lifestyle.

I found a youtube video by the psychologist in charge of the Mayo Florida Pain Rehab Clinic. They work with patients to help them learn various techniques for pain control and to help get your life and mind and body in sync. They guide you to understand what part your brain plays in all the different areas of your body that are declaring war. Ck out cognitive behavior, central senstization videos from dr. Sltetten. @rwinney, another patient, attended the clinic and posted some interesting comments.

I'm not suggesting you need to attend the clinic, although it may prove helpful in the future, but more than that we all need to look for ways to improve our thinking about our illnesses, our bodies and the way we are right now. Acceptance of ourselves with these changes is very important to begin the healing process. You can't be at war with yourself and expect to be calm, at peace, in healing mode or acceptance if you're fighting all the time....I've been in the fight/flight mode most of my life, trying to make this body behave! Well, that isn't how it's done, so I've been fighting and making my body worse and certainly making my attitude and thinking less productive.

So, maybe it's time to take a step back, think quietly about these issues and move gently forward to find what right and best for you. Then, soon, you'll have the bloodwork tests back. you and your doctor will sit down and chat and you'll get his input and opinions. Then, next step, is dependent on what he says. I suggest he may well refer you to a rheumatologist as you requested, or a neurologist, depending on the test results.

If you take these days to begin to learn how to work on your thoughts and brain to improve your health, you're begiing the healing process before seeing the doctor who will work to help you heal!

Get going and change yourself for the better, begin healing and get on your way. @colleenyoung and @rwinney and @ becsbuddy, @gingerw, @sueinmn and so many others are here to help guide you to the place of dealing with your life well, of healing..... You will find answers from the upcoming bloodwork and this doctor, and from whomever he refers you to see, and from all the folks on these sites. Now you are learning how to live and heal. Blessings on this journey...elizabeth

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This is wonderful advice Elizabeth. @change25 , I would like to add that the stress and anxiety of waiting for answers becomes almost like another disease to deal with on its own. Refocusing
When I was struggling in the midst of the pandemic, I resorted back to tools from an earlier time.
First, a gratefulness journal. Every morning and every evening, I would list 3-5 things in my life I am grateful for. No repeats allowed.
Second, I made a list of all the things I am still able to do and I add to it daily - at least one thing.
Third, "5 things for 5 senses" z stop in the present moment, and list 5 things I currently See, Hear, Smell, Taste and Touch or Sense.
Fourth, conscious stretching - either standing up or lying down, pushing each body part to its limit, then relaxing it.
Finally, a thought, prayer or meditation of the day - depending on your beliefs.

Not all of these exercises work for every person, but something works for everyone. In my family, we have used them with kids as young as three, and grandparents in their 80's
Sue

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@change25 Just been looking at the photos, and I have some comments. You may not have the same diseases, GSN and FKTN, with RyR2. But the same symptoms.
*Pulsating headache, difficulty focusing. #Me, too. Especially behind the forehead, in Brodmann 24 and 9 brain areas. My experience? Gelsolin
*Weak eyes where they feel droopy along with being dry and painful. # Me, too. Same. Upper Eyelids now sagging down to where they are beginning to comer the pupils.
*Dry and sore mouth. #Me, too. Sjogrens, with Gelsolin. Use a good night-time mouth and throat moisturizer.
*cheek and jaw pain. #Me, too. Gelsolin, probably also the FKTN. GSN gets into joints and into teeth. The teeth become brittle and crack easily, often with no other cause known. Even brushing hard, or going from cold to hot or hot to cold rapidly. Then they crack, and eventually rot easily. Make sure you are good friends with your dentist and technician. Same problem with finder and toe nail. Splitting long-ways, right in the center. Toe nails also very brittle, break off easily. And bones. Broke one toe putting on socks.
*Changes in pigmentation, face appears gaunt. #Red Cheeks, on cheek bones just below eyes, with swelling. Swelling like half-egg shape and size just below ends of mouth. Very hard on skin. Anything that disturbs the skin will show for years. Mayo techs at Phx took five blood samples along one vein in the summer of 2016. Those five 3/16 inch gray dots are still easily visible on my arm, just below the elbow. Both lower legs have 10 inch bands of dark gray to purple or black, halfway between ankle and knee.
*Back pain. #Me too. With me, Ankylosing Spondilitis and Spinal Stenosis. Much facial pain. Gelsolin is very hard on the face with cutis laxa, sagging skin, even to the point of the eyebrows sagging down to rest on the upper eyelids. The Red below the eyes is tiny blood vessels breaking / inflamed just below the skin. Worst pain is in the Limb Girdle areas. Hips, thighs, upper arms, shoulders. And feet and hands.
*Odd tingling sensation present in hands and feet. #Me, too. Distal Polyneuropathy. It is not a skin issue, but nerve and liquids. Use 1/4 tspn turmeric powder in 1/2 cup of warm water. Actually, the DP shows up anywhere. Hands, face, feet, thighs, neck spine.
*cold hands along with an odd rash present on hands and knuckles, which is a deep purple. #All over my hands and face. From red to gray to black. I Use Gold Bond Psoriasis Creme with Aspirin each night and Noxema Cream each morning. Occasionally I use Clobetasol, or Dovonex or other. Spread it on thick and rub it in. Then I always wear a warm stocking cap (day and night, often with gloves) to keep the scalp, face and hands warm. I also have a heavy paste dandruff, which I can only clean with Pine Tar Soap. I use Grandpa's Tar Soap from Cincinnati area.

Many Cardiomyopathy Genes and syndromes. Now over 40 cardiac procedures, including caths and stents, 2x bypass, etc. Maybe there are some ideas here you can use for relief.

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...that could be it,not sure, I was born in UK and came here alone in 1962 at age 18. In those days we were raised not to say "boo" to a bird!!! I was bossed round at work started when I was 16, and 9 year first marriage verbal and mental abuse.... I suppose it stays with you. I was recently yelled at over phone by ent I had waited almost a year to talk to and I didn't dare speak up. However, did write a letter a week later nicely explaining and hoping I hadnt prompted his behaviour type thing; he phoned week after after and said he was glad I wrote the letter, said I taught him a lesson and that his famiy said he does this.. but he still went on about himself! However my husband also does not often speak up for himself, but when he does, look out!!! p.s. I think we should be able to question those in authority if it involves our health and wellbeing, but it's a path I am not happy going down....in case of reprisal! J.

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