I have been perusing different web sites and support sites to find a good place to relate to others with similar conditions. It doesn't seem to be the easiest thing to accomplish due to incomplete diagnosis (MD's don't see eye to eye), multiple diagnosis (hEDS, MSA, Dysautonomia, Mast Cell Activation Disorder, Orthostatic Intolerance-P.O.T.S. etc.)
On another site I was able to add a few of my more dominant conditions as individual communities. It is helpful to get specific advice and listen to talks by neurologists about these problems.
The hard part is piecing together all the information you learn and figuring out how to apply it to your own unique condition. Everything is so complex. If this was just 1 diagnosis I could read up on it. learn everything about it and apply what I've learned.
But this is like a giant green salad with so many ingredients. And you have to check each ingredient to be sure that its not something you will have a reaction to. By the time you are finished checking everything, the most delicate items have begun to spoil, and your family has already finished their meal. You are left to make due with what you have. And you are expected to maintain a good attitude and a fresh outlook.
Today we started with Sunshine, a beautiful day. My head was throbbing and I was suffering much pain in my back from the time I woke up. But my outlook was good. I was hopeful.
This afternoon the sky is dark, and we are getting much needed rain. I am grateful. It has been a long day. I have forced myself to accomplish some tasks. I have pushed through the migraine and back pain that has lasted all day long. Other pain and symptoms have reared their head. I have picked out all of the unedible salad ingredients. I am left with enough. My symptoms try to overwhelm me.
Its a rainy day in southern California....but we need the rain. The rest of the country suffers from the polar vortex. I am grateful to be alive. Maybe there will be less pain tomorrow.
Written by
JoeyLuv
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What a beautiful description. You have a way with words. I hope you manage to get a diagnosis. It might be easier to deal with once you know what it is. It is snowing here in England, which has its own challenges but is very pretty all the same. Planning on hunkering down in front of a glowing wood burner with a book.
Sending you lots of love and strength for whatever life throws at you.
You are so sweet! Thank you for your kind compliment. I really appreciate the support! I agree that it will be easier with a solid diagnosis.
The hard part is knowing that some diagnosis don't come until you've passed. All I really want is for the insurance company to quit pushing against the doctors orders so that I can get some relief of symptoms and have the equipment I need to get out of the house for more than dr. appts. (sorry for the rant)
Regarding the snow- I grew up with it, on a farm in Kansas (the middle of the US). I miss its beauty. But honestly, I left in the middle of a snowstorm for California more than 20 years ago, lol. I was playing "Don't Look Back" by Boston, in my cassette player. Such a silly girl I was.
I would love to see England!!! Maybe someday...My husband and I had travelling plans until I got too sick.
Thank you again for your kind words. I hope the cold isn't too rough on you. I think a book and a warm fire sounds glorious. Take good care, Joey
Thank you for your reply. I am so sorry for your predicament. I really hope that you get the insurance sorted out. It is a sobering thought for us that our government is pushing our health care system in the same way.
We are enjoying the snow. It is so beautiful and we have brilliant winter sunshine alongside.
I hope you get to see England some day. Sending you lots of love.
So sorry to hear about your issues trying to get a proper diagnosis; it really isn't easy with these neurological conditions even if the health system helps you. If you're also struggling against the system as well it must make life so difficult.
About a month ago I posted about a research document that I'd seen on another forum. If you have the perseverance (and resilience) to wade through it you will find a good outline of some of the 'overlapping' conditions and their similarities and differences. You may want to get through it yourself....it can be hard going....or at least you may wish to take a copy with you to your neurological specialist and ask them to point out the relevant bits. The link to the document is healthunlocked.com/api/redi.... If you have trouble linking to it, give a shout and I will help.
I see from your chat with Hellebelle, that you have delayed travel for the time being which is very understandable. Once you have a better diagnosis however, do try and travel. Jackie has MSA-C, and whilst we don't do it in the way we would have done some years ago, we still find travel is one of the best tonics we could have.
Finally should things point in the direction of MSA, the Multiple System Atrophy Trust here in the UK is an excellent source of help and information. They have an e-mail response service for specific questions. This isn't limited to people in the UK alone and I am sure they could help albeit of course the first thing you need is some greater clarity on the diagnosis. Good luck, feel free to have a rant whenever you like; there are many people here who will listen and help if possible.
Please give my regards to Jackie! And thank you so kindly for taking your valuable time to offer your support. I haven't yet looked it up, but I so appreciate the research document you have included the link for. I have to spread my reading out, as I get migraines and double vision. I try everything to keep reading longer, its the most important thing.
You mentioned that Jackie has MSA-C. I am really sorry about that. I have a question. My neurologist thinks I have MSA because of a combination of test results. The skin biopsy and tilt table testing are among them, but the sleep apnea test showed that I have Central sleep apnea, caused by the brain failing to tell my body to breathe. She said that I have signs that multiple parts of the brain are not functioning, which accounts for a host of symptoms......I digress, this may be too personal, so please tell me to leave it alone, but...does MSA-C get diagnosed because of where the brain malfunctions are-like Central Sleep Apnea?
Also, thanks for the traveling recommendations. We'll never get to Europe since I am no longer able to work, but we could take short trips when my pain is better under control.
Thank you again for being so helpful! It means a great deal!!!
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A very special day in the life of an MSA patient
Just Introducing myself
Fitness seems to be so important?
