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lenora

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What does the endocrinologist suggest if you tell him/her that you're alone and are worried about your kidneys, etc. Perhaps you'll be given a list of warning signs...I hope so. Yours, Lenora.
 

lenora

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Good luck when you see the endocrinologist. That's a very long time to wait to see such a specialist, isn't it? Please get back to us......who knows, you may find something out that would be useful. Yours, Lenora.
 

SWAlexander

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Vitamin D, omega-3 supplements reduced risk for incident autoimmune disease

The use of vitamin D3 or omega-3 fatty acid supplements over a 5-year period may reduce the incidence of autoimmune disease in older adults by 25% to 30%, according to data presented at ACR Convergence 2021.

“In past ecologic observations, inflammatory bowel disease, multiple sclerosis and type 2 diabetes have been shown to be more prevalent at northern latitudes, where circulating vitamin D levels are lower,” Karen Costenbader, MD, MPH, director of the Lupus Program at Brigham and Women's Hospital, told attendees at the virtual meeting. “Both high plasma 25-OH vitamin D and high residential UV exposure were associated with a decreased risk for rheumatoid arthritis among women in the Nurses’ Health Study in our past work.”
more: https://www.healio.com/news/rheumat...MBTL8Wzmpms9B8RWVznGo5FGm2xUq1b05Ewf1cVb6Bv34
 

SWAlexander

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Monday I have seen the endocrinologist and was, for the first time, impressed. The receptionists were very professional and respectful. The young Dr. took her time and read my very long med-history. At the end of almost an hour analyzing everything incl. my brain MRT, she came to the same conclusion my Endo-Dr in the US did. She believes, I have inflammation in the brain. She belives my pituitary cannot fully function because the brainstem has a slide kink forward, pressing the hypothalamus and pituitary. However, to be sure she is also testing the adrenal gland function first. But first, I have to get off prednison step by step - in 7 days. After, she will determine the dose of hydrocortisone. She was shocked how the oncologist neglected my MCAS condition.
 
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lenora

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Good news @SWAlexander. Often the younger ones will put a lot of time (which we need) into the problem before them.

I'm not making a diagnosis here, but it sounds like you may have a possible Arnold-Chiari Malformation Syndrome, which can be helped by surgery. I had it about 35-39 years ago and it stopped the progression of my problem, together with another illness I had surgery for, Syringomyelia. Odd as at one time I had a pituitary tumor also...cured with a medication that I took for years.

She sounded very thorough, like she knew what she was talking about and that's great. Good news! Yours, L.
 

SWAlexander

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Sorry Lenora, I have missed your post.
Yes I have Chiari Malformation and had a decompression surgery in 2009. Unfortunatly I have more problems.
Stenosis, L4 and L5 an T2 and 7 Tarlov Cysts and Myalgia. That´s enough to make life miserable.

Today I got another warning about Hypokalemia. My potassium is again too low, but I can fix this with bananas potatoes and a tiny bit of Potassium chloride.
Here are 8 signs and symptoms of potassium deficiency.
  • Weakness and Fatigue.
  • Muscle Cramps and Spasms. Muscle cramps are sudden, uncontrolled contractions of the muscles. ...
  • Digestive Problems. ...
  • Heart Palpitations. ...
  • Muscle Aches and Stiffness. ...
  • Tingling and Numbness. ...
  • Breathing Difficulties. ...
  • Mood Changes.
One good news, my Vit D deficiency has improved. Not by taking meds, I went now for 2 month to the tanning studio 2 x a week but only 8 min at the time.
 

Judee

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I suppose I should get a lamp.
Actually I think the lamps and tanning beds are higher risk for skin cancer than just going out in the sun. I heard that somewhere before. Maybe it's not relevant anymore but thought I'd mention it. Sorry you went through all that Lenora. Hope all the cancer is gone now.
 

lenora

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Thanks, Judee. No, I never bothered with a lamp either. I know that I couldn't possibly get enough Vit. D, but I work on that via vitamins and foods. With my skin there will always be a problem, but it's when it's a big deal on the face then it's a nuisance and takes a long time to repair. Oh, top of the head too, so be careful of that.

Still my daughters and granddaughters go out in the sun.....slow, slow learners and if they can't learn from what occurred to me, they'll find out a much harder way.

I hope you aren't having a terrible winter along the Great Lakes....no telling this year. Yours, Lenora.
 

lenora

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Lenora, you are always very caring. Thank you.
I know about the effect of cortisone, but what can I do? I live by myself and I must manage everything by myself. Lack of cortisol can cause adrenal crisis.
Just a few days ago found out, and still surging for a relationship between low Potassium and low cortisol. In 2016 I had, after surgery, frequently calls from the hospital that my potassium is “dangerously” (3.) low (hypokalemia). Getting too little potassium can increase blood pressure, deplete calcium in bones, and increase the risk of kidney stones.
At the same time my cortisol level was 2.5. This was the time all ME/CFS symptoms and POTS (blood pressure 196) brain fog had me down and nonfunctional.

Hello @SWAlexander.....just saw these posts. Sorry for not replying. In the many years I've lived with this, there is always, always something. We're not textbook cases and if you have one physician you can talk things over with, just one, then use his/her advice. We can't cover all of the bases and we never know exactly how our bodies will react to any one thing. You may one of those people who has to stay on cortisol and your body can somehow accommodate you.

I find we can drive ourselves totally insane with worrying about all of the numbers lining up....in most of our cases, that will never happen. Maybe I've had this for so long, perhaps it's age related, but I have many things wrong, they'll never be right and yet I can accept this outcome. It helps to be older in that regard....and just having it for such a long time. Don't get me wrong, old age brings other concerns, but hey....it's one more thing. When I was younger, that wasn't always my attitude.

If you have to go out, then do what you can to obtain that goal. Have your heavier goods delivered and maybe, just maybe it's good for you to go out each day. Personally, if I could I'd stay on steroids all of the time....you do feel like you're almost normal again, don't you? Or at least I do, but then that depends upon what's given. It's so good to have some form of energy, a thrill even. But I always fall waay back when I come off them. Just be careful of falling if you ever do. Good luck and better health. Yours, Lenora.
 

lenora

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Also SWAlexander....you can take potassium pills and/or electrolyte drinks (such as Pedialyte) for imbalances.
I don't know if this is something you'd go for (I didn't have any choice from the age of 40 at the latest) but I have to be on something like Fosamax for bone strength. My osteopenia is rather severe.

Out of interest, for those who don't know between the ages of 65 & 70 both men and women have the same chances for lower bone density. Men can fracture as many bones as women...in both cases, hormones protect us. There are now shots available given once/6 mos., but I'm leery of those b/c I've heard of people developing FM as a result of them. I take one pill/wk., am upright and it has to be taken on an empty stomach and kept that way for 45 min. Plenty of water with it.

In the early days when Fosamax first came out (and I've been on it from then), with a short break in between....people laid down and esophageal damage occurred. Today they know better. It doesn't seem to upset me in any way. I can't afford a fracture, although I've had many minor ones....but knee or hip surgery would be way too much for me, and probably for many of you also. Something to discuss with your Dr., and no I'm not happy about having to be on certain meds, but that's the way I have to live. The jaw problems are generally a problem if chemo has been used on you. Our teeth age along with us, which means lg. dental bills for replacements. Always weighing our options it seems.

It seems to me that if you check out Earth Clinic (?) you can find a way to prevent the build-up of kidney stones. It involves a diet of some sort....fasting type. Earth Clinic is not what it used to be but is a good place for those who like natural cures. I use it as much as I can myself. Best to each of you for 2022. Yours, Lenora.
 

SWAlexander

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Hi everybody:
After so many years I have two diagnoses:
1. Endocrinology: Epicrise: Corticotropic insufficiency. From now on I have to carry an emergency passport and emergency kit.
1644081537710.png

2. Hematology: Antiphospholipid syndrome

and finally, neurology confirmed:
1644081068992.png
 
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lenora

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Hello @SWAlexander....Your second diagnosis is somewhat similar to mine (although I had a pituitary tumor in the first instance...who knows what the status is now?).

I can only tell you that in addition I also have a neurological syndrome called Syringomyelia (SM) followed by Arnold-Chiari Malformation and the usual ME, etc. I did have surgery for both the SM and Chiari Repair many years ago, but apart from losing the neck pain, the other symptoms have stayed exactly the same, with the addition of FM (fibromyalgia...very painful). In other words, I'm in about the same shape as I was say 35-40 yrs. ago and I do believe they're once again returning to exercising to help build muscle strength. Very little helps with the pain, although gabapentin and lyrica are the best I've found.

Be careful of your bones....osteoporosis seems so far away, but I developed it very, very early in life. As I write, I'm sitting in bed (sort of) with stress fractures of my pelvis (no great fun), a bad knee and a lumbar fracture which has healed twice before. So gentle exercise (if you can manage it) plus regular MRI's is possibly best. It's very hard to know....but if you aren't getting worse, then that's a good indicator. Yours, Lenora.
 
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SWAlexander

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Hi Lenora,
the Chiari Malformation is the least of my problems. The decompression surgery made no difference. I have learned to live with the symptoms.

The Antiphospholipid syndrome disables me sometimes to a point where I believe life cannot go on like this. Antiphospholipid is when the immune system mistakenly creates antibodies that make blood much more likely to clot. This can cause dangerous blood clots in the legs, kidneys, lungs and brain.
I suppose to start Jan 4th on heparin, but my PCP refuses to administer the suggested treatment. Now I have to wait until the 15th Feb. to see my hematologist again.

The Tarlov Cysts don't allow me to sit or stand up for long. This includes pain in the area where nerves are affected causing numbness in the arms and legs.

The real challenge is my low cortisol and ACTH. Low energy, temporary short-term memory loss, the brain feels like on fire. This is the time when you feel life is slipping away and can do nothing about it.
My meds are 15mg hydrocortisone in the morning and 5 mg at noon.
Now all I can do is, what I have done all my life, WAIT AND SEE.
 

SWAlexander

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Hi everybody.
It was a long fight but worth going in battle with doctors.
After seeing 14 different doctors, today I can announce that I’m so much better. Even my primary doctor is now, and to my surprise, finally convinced that I was very very sick. However, she is not capable of apologizing for neglecting me for one full year.
It was my stubbornness to ask the endocrinologist, and hematologist for specific tests (I presented my pre-diagnosis) that brought me to the point where I now wash windows, walk steps and go shopping without collapsing right after. Most of all I can eat nearly everything I like, except dark green veggies (vitamin K).

Diagnosis:
1. Adrenal insufficiency
2. Antiphospholipid-Syndrome
3. Neurology confirmed brain inflammation.

Medication:
15 mg Hydrocortisone
25 days on Hepaxane (Heparin) and in addition (for the last 3 weeks) Marcumar because the Quick test was still too high. Now I am permanent on 10 mg Marcumar.
1x a week methotrexate (metex Pen 17,5 mg) and 24 hours later 1 Folic acid.
High dose of vit.3

As soon I started Hepaxane petechia began to disappear my skin became almost normal.
Methotrexate did wonders to the brain fog and overall inflammation.
The pancreas, liver and kidneys work normally. Methotrexate stopped Neuro-inflammation, and CSF fluid leaking from my ear, and the cloudy vision in my eyes is gone as well.
Now POTS, PEM, brain fog and all allergic symptoms are almost gone. Energy level up 80%.
Now I must build up (very slowly) muscles in my arms again.
My life is almost back and worth living again. Still, I am very cautious and watch out for eventual changes, especially about the blood thinner.
 
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Hi, glad youre feeling better. Can u tell me if Cortisone worked right away for you or if it took some time?
I did a saliva test for cortisol and it was really low, tried to go without Cortisone for 5 months, but i just couldnt take it anymore, so monday i started with HC, but i still cant feel any effects.
 

Wishful

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When I tried prednisone, there was no effect for 5 days, so I judged it another 'didn't work' treatment. The next morning I woke up with a full temporary remission. (Yay! I found a treatment for my mysterious disease!) Of course, the effect wore off after tapering off the drug. I got a refill, and it only took 2 days to start working. I tried it twice after that, with no effect. :( I think cortisol drugs are something we have individual responses too, and that having it work reliably long-term is probably uncommon or even rare.
 

SWAlexander

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Hi, glad youre feeling better. Can u tell me if Cortisone worked right away for you or if it took some time?
I did a saliva test for cortisol and it was really low, tried to go without Cortisone for 5 months, but i just couldnt take it anymore, so monday i started with HC, but i still cant feel any effects.
A saliva test is not enough to determent what kind of cortisone you would need. Prednisone or hydrocortisone. You may need an ACTH test in addition.

Most of us have very heavy inflammation, somewhere in the system and cortisone can help, but it does not cure the root cause. Methotrexate also brings inflammation down.

Did you ever have a FULL gut bacteria test?
In the video, Dr. Carlo Brogna (Italy) confirmed my theory about gut bacteria:
If gut bacteria are out of balance inflammation will persist in spite of cortisone and methotrexate.
 
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