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Living With Sjogren's / Re: Awful itching all over
« Last post by jazzlover on June 15, 2019, 08:07:09 PM »
That is awful that they canceled your appointment!!

Could you trial some diet changes (low histamine or lower histamine foods) .. and even some anti-histamines to see if it helps?

Google is your friend ..... and we are too!
Living With Sjogren's / Re: Just need a soft spot to land
« Last post by Skylar on June 15, 2019, 04:15:48 PM »
You?re not alone. I hope knowing you have a community helps you feel better.
Living With Sjogren's / Re: Helpful tips for controlling OA?
« Last post by Skylar on June 15, 2019, 04:14:25 PM »
I do have the answer.

I wouldn?t expose myself to an unnecessary and expensive MRI unless my doctor felt it was truly needed for a diagnosis and treatment.

As for the pain from Arthritis, including Osteoarthritis can be eliminated or ameliorated with diet. It can?t cure OA, and it cannot repair the damage to the joints but diet can help eliminate most of the inflammation in the joints so you can move more easily with less or no pain.

Dr John McDougalls diet is anti-inflammatory which helps reduce the swelling in the joints. I?m amazed at how effective it is. If the regular diet doesn?t work there may still be a few foods that need to be further eliminated so he has an elimination diet for that. Again it?s not a cure, it doesn?t repair the damage but it makes living with OA so much easier

 I?m not allowed to put a link here that works, but if you put www in front to this it should take you to the correct page.

The beauty of this way of eating is you get everything you need, protein, carbohydrates, fat, vitamins and minerals without any additional vitamin pills or supplements except for B12. You will need to take B12. It meets the US government guidelines and if you are unsure you can check it yourself on Chronometer or other similar app linked to the USDA requirements.

If you are serious about getting rid of this pain then follow this diet seriously for 3-4 weeks and you will find success.
I?ve had a spinal tap as part of work up for multiple sclerosis. OMG I will never have another one in my life after all I went through. It?s a very invasive and has potential dangers side effects. I would only have a spinal fluid testing if there was no other option. I would never have it for something untested. Mine was botched and I?m lucky nothing permanent occurred.

Personalized Medicine offers such hope but the reality is its not proving to be effective.... at least with treatment of serious diseases such as cancer. I used to do research in this area. You will still hear these buzz words in marketing because it sounds so wonderful and futuristic but doctors haven?t found basing treatment on those tests meaningful. There are exceptions. Of course this is all being done quietly so patients aren?t aware of the changes. It?s not being done to save money or hurt patients but because of disappointing results over many years.

I often question my doctors about certain tests, especially invasive tests with potentially serious side effects whether or not it will change my treatment. I do this with the vet too regarding my pets and often the answer is no it won?t change anything except maybe the doctors will have a little more information. Sounds like your neurologist didn?t need the spinal tap after all and you were spared.

Sorry to be Debbie downer.
Living With Sjogren's / Re: Awful itching all over
« Last post by Skylar on June 15, 2019, 03:35:18 PM »
Could it be something you are eating? We can develop allergies at any age. You might want to try an elimination diet. They are hard to do, but if you eat a limited diet of least allergic foods for a week or two and see no change then you can rule out food. Dr John McDougall has lots of information and a really good elimination diet on his website.
Living With Sjogren's / Re: Ashwaganda
« Last post by Skylar on June 15, 2019, 03:27:56 PM »
I wouldn?t. There?s no quality evidence based research showing its effective and it has side effects.

When you consider the amount of money drug companies have put into studying aruvedic medicine if this had any potential you would see drugs based on it.
Living With Sjogren's / Re: Driver's License Suspended
« Last post by Skylar on June 15, 2019, 03:20:09 PM »
The irony in this issue is that is clear that many Sjögren's patients should not be driving, but driving around town it seems that many
people over 70 years old will not pass a behind the wheel test.
    As for myself, I have enrolled in a Senior Drivers School, and have started sessions with a musculo-skeletal physical therapist.
i hope you pass the test when you are ready to retest. I?m glad you are taking actions to improve your physical and mental skills to improve your driving. You deserve a lot of credit for being proactive.

On the other hand I agree with the others, if you aren?t able to pass the exam you, and everyone else who can?t pass, shouldn?t be driving for everyone?s safety.

My father-in-law had a serious accident when he shouldn?t have been driving. He refused to listen to family that he was not safe and it was an affront to his ego and sense of independence. Luckily it was just property damage but someone could have been killed. That accident scared him into quitting but it would have been nicer if he had quit before.

 I?m thrilled that you have a plan to get your license back. I?ve taken a senior driving course through AAA to lower my drivers insurance premium and I learned a lot that I?ve been able to use. The rules I was taught back in the prehistoric era in high school have changed and new insights into how older people drive requires some adjusting too such as leaving more distance between you and the car ahead to adjust for slower reaction time.

I?m sure the therapist will help amazing how much therapy does help if you do the exercises.

Please post what you are learning. It?s helpful for the rest of us. I am not looking forward to the time when I or my DH no longer can drive. I hope autonomous driving cars are available then, but I doubt it.
Living With Sjogren's / Re: Heart arrhythmia and drug prices
« Last post by Skylar on June 15, 2019, 03:03:30 PM »
Sorry for the change in health insurance but I do think you should get it checked out if you are not feeling well. Perhaps a call to your PCP to see if you need to be seen by a cardiologist. As Irish mentioned it could get worse and there may be serious consequences to waiting.

While monitoring at BP home is wonderful, sometimes there?s a hidden price of seeing things that normally are not seen. Irregular heartbeats are fairly common and normally harmless. Becoming aware of them through monitoring is added stress ... stress that didn?t exist when you were unaware of them.

Your blood pressure seems to be falling into a normal low blood pressure. If you are dizzy, fainting or feeling ill when it dips then you should get that checked out. I have normally low blood pressure with no problems and no health issues. For me it?s a good thing, my heart doesn?t have to work too hard to oxygenate my body. But for others is a health issue.

Here?s what Mayo Clinic says on line so you can google it because I know I can?t add a link due to this forums policies. This is a info for low blood pressure, above these numbers are considered normal pressure. ?blood pressure reading lower than 90 millimeters of mercury (mm Hg) for the top number (systolic) or 60 mm Hg for the bottom number (diastolic) is generally considered low blood pressure.

The causes of low blood pressure can range from dehydration to serious medical or surgical disorders. It's important to find out what's causing your low blood pressure so that it can be treated.?

I was surprised that Good RX didn?t have a lower price for Restasis..... blatant price gouging to my way of thinking. Have you looked into the Restasis coupons through the company?  I had to pay full price a few years ago and it was around $400 back then. I was shocked and upset but I have decent insurance for drugs now.
Living With Sjogren's / Re: Heart arrhythmia and drug prices
« Last post by irish on June 14, 2019, 08:02:09 PM »
WE have had a fair number of people on this forum with Sjogrens who have had heart involvement. They have suffered from several different types of heart irregularity. Some have needed pacemakers and some defibrillators. I would advise you to see a cardiologist who is familiar with Sjogrens patients with neuropathy type heart involvement.

This is something that needs to be taken care of early on cause it could cause you to have more severe problems.
the pacemakers can be done on an outpatient basis I believe but heart tests would be needed. Just a thought cause this is not normal and you could pass out when driving, etc. Could be a dangerous situation for you. Good luck and keep us updated. Irish

P.S. And then again sometimes a medication could take care of it.
Living With Sjogren's / Heart arrhythmia and drug prices
« Last post by SjoGirl on June 14, 2019, 02:02:07 PM »

These two items might seem related though they are not:

1. I've been having irregular heartbeats for several months now. It's becoming more concerning since my BP is dipping quite low, this a.m. I got 90/71 at one point, though it was 113/71 a bit later. I just realized that my BP monitor checks for irregular heart rate, it was quite busy the other night. 

This seems to happen when I'm really tired, which is happening more often. I've had bloodwork done to check vitamins and other stuff, so far just slightly low Vit D everything else is well within normal. I'm waiting on cholesterol, which hasn't been checked in a long time.

2. We changed insurance because my husband switched jobs. The good news is that he pays no premiums, the bad news is that we have a $4k deductible and the insurance doesn't seem to pay for much. I went to pick up Restasis today and the bill was $295, if my heart was already aflutter it was even more so then. FYI I learned that Good RX does not count toward Restasis and that Restasis is $695 without insurance (outrageous!). I also got a $495 bill for bloodwork and am sure there are more bills to come.

I only work PT and consult so this is going to take a real bite out of my income. Now I'm praying the heart issue is no a big one!

Thanks for allowing me to vent.
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