Help; hopeless and sad

[lindapeto]

I have been having new symptoms, that is, losing cognitive ability.
It is really scary, and I have been reading about nutrition and it's effects on inflammation.
Someone suggested I read GRAIN BRAIN,by Dr. Perlmutter.
My husband is a MD, and not supportive of "alternative" medicine.
While explaining some of the views with regard to anti-inflammation eating, he said "if this was true, the whole medical world would know about it, which they don't; and should we all start eating blackbirds?, for instance."
You can imagine how I feel - back to nobody understands what this is like but us..and totally lost, hopeless again. I attend OT PT and speech therapy for ways to deal with changes, but

HAS ANYBODY HAD ANY REALLY GREAT OUTCOMES WITH DIET CHANGES TO DIMINISH INFLAMMATORY  DISEASE OF ANY KIND/BRAIN/MEMORY/GI/ETC?

If so, I could sure use a pick me up..  Thanks, Your friend, Linda

[quietdynamics]

I follow an anti-inflammation diet.
It was something I did 'naturally' intuitively, pre -Dx, as certain foods, how they were prepared just made me feel ill. So the disease state was already present and my body was signalling me.
Sugary foods made me crash or feel drunk, mentally sluggish.
Greasy food nauseous, etc.
So I just stuck to the basics and cooked from scratch and raised my children that way.
Even avoiding items with fructose. Basically grocery shopped the perimeter of the store.


Medical: Patients Dx'd with diabetes are very often referred to dieticians. There is a lot of information regarding RA and diet. And there is information regarding Sjogrens and diet.
So if a lifestyle adaptation will help ameliorate inflammation/flare of symptoms, improve our quality of life then it is a positive.

I recently started to be seen at a Sjogrens Center and they mentioned and anti-inflammatory diet.
And they would know.

On the flip side.. Sjogrens patients tend to be low in Vit D and sometimes Vit B.. so having them checked would help. 

I did have severe cognitive problems and then later headaches (new for me).
Keep a diary of these symptoms. I did see a neurologist.  Quality of sleep was another aspect we addressed, as it affects cognitive ability.

SJS disease presents along a spectrum: some people with no symptoms at all to those with severe.
Diagnostic and Prognostic Features of Sjögren's Syndrome
http://cdn.intechopen.com/pdfs-wm/26064.pdf

[Joe S.]

Linda, your post made me sad. I do not know if you have read"spoon theory" on the web, but please do. If you can get your family to read it, that may provide some help.

I understand that Doctors do not like alternative therapies. You may need to take some covert action to try R-Lipoic Acid and Acetyl-L-Carnitine as a 30 day experiment to see if it helps with your brain fog.

My doctor said that it takes them 100-200 years to change their ideas. She is under constant pressure from her mom to change her ideas relating to alternative medicine. I mentioned "Life Extention" magazine to her. She mentioned it toher mom who now subscribes. They list biomed studies with all articles except interviews. They have over 100 MDs on their board.

Mayo does not believe in Auto Immune diseases. Most doctors do not believe in nano- bacteria, viruses, etc. but they still autoclave their surgical tools. John Hopkins teaches two symptom diagnosis after a computer program had almost double their doctors accuracy.

I could get into more but my fingers get tired and sore.

I hope this helps you to realize you are not alone.

[Carolina]

Dear Linda,

IF the problem is inflammation, a course of corticosteroids (prednisone or medrol) will stop the inflammation completely, and you should see improvement in a short period of time.  Of course, if there is inflammation, once you stop the prednisone or Medrol, it will return.

I also suggest that you see a neurologist for your cognitive problems.  The brain is their area of specialization so that several possibilities can be addressed.

If the problem IS inflammation, and if any diet will slow or stop inflammation you should certainly be able to change your diet and test your theories.

I don't mean to frighten you, but Immune System Disorders, causing attacks on our organs/systems CAN attack our neurological system (mine has been profoundly damaged: the nerves in my legs.) and this of course includes damage to our brain.

This is why a neurologist may order an MRI of your brain, to discover whether or not there are changes to your brain that my be causing your memory and cognitive deficits.

Please don't be afraid and worry. 

Of course you can try dietary changes at any time.

Pay as little attention as possible to your husband when he deals with medical issues.  My husband is a research immunologist and I can say that he is often wrong, but never in doubt on medical topics.  The Ultimate irony is that I have an Immune System Disorder of a serious nature, which he never once suspected in our (at the time of diagnosis) 50 years of marriage!

Hugs,  Elaine

[quietdynamics]

Harvard Health Publications has articles.

Foods that fight inflammation
health.harvard.edu/staying-healthy/foods-that-fight-inflammation

"In addition to lowering inflammation, a more natural, less processed diet can have noticeable effects on your physical and emotional health. "A healthy diet is beneficial not only for reducing the risk of chronic diseases, but also for improving mood and overall quality of life," Dr. Hu says"

[Sooki]

I'm so sorry you're experiencing this, Linda.  It's hard under any circumstances.  I've had a very good experience with changing my diet.  I'd recommend trying a gluten, dairy, and soy free diet to start with.  Increase your fruit and vegetable intake, and cut your sugar and refined carbs as well.   I found big changes in my disease progression and brain fog from these changes alone.

There is a major paradigm shift going on in nutritional research and guidelines right now.  Most of the agencies making guidelines for us are making changes and questioning the whole low-fat, low cholesterol paradigm.  So it's no wonder your husband is skeptical.   But in another 5 years, I think the mainstream, text-book, AHA-type guidelines will be very different.  In any case, nearly all nutritionists agree on the benefits of higher fruits and vegetables, lower sugar and refined carbs.

A good resource for the current research being done on anti-inflammatory diets is thepaleomom blog. 

Another big actor in brain fog for me was vitamin D. I see you take supplements.  When I was feeling my worst, my vitamin D levels were at 30,000.  Now they're at 73,000 and I feel much better.  I take 4000-5000 IU a day.  My rheumy says 70-90,000 is optimal for people with Sjs.

Stress is another big kicker - sometimes that's really hard to control due to circumstances.  But the more you can make life changes and draw on whatever resources are available to you to relieve you of the causes of your stress, the better your health will be.

Another big factor for me was thyroid.  I feel best when my TSH is around 1.  Some doctors rely on a much wider acceptable range, however, I think the consensus is changing to a much narrower range.  Name brand synthroid (e.g., Levoxyl) is thought to be more consistent over time; you might ask your doctor about switching.

Be sure to let your rheumatologist know all your symptoms and their importance to you.  Maybe s/he could adjust your Sjs medications to help the brain fog symptoms.

Hugs to you!

[warmwaters]

I would echo the suggestion of seeing a neurologist, and possibly get some cognitive testing to understand where the cognitive issues are.  Understanding what the problems are may help you to develop workarounds for dealing with them. Search for brain fog on this site (search is up in the top right corner) and you'll see many discussions about how we come up with techniques to deal with the cognitive issues.

Trying an immunosuppressant like prednisone will help to see if the cause is inflammation. If you feel sharper on the immunosuppressant, it's likely that this is a contributor to your cognitive issues.

Trying diet changes to see if it makes a difference seems like a worth while thing to try. I know some people here have reported good results on various diets.  I think the key is understanding that different people respond well to different diets, so there is no one simple answer. The other thing about dietary changes is that unless you go to some crazy extreme, there's little chance of doing yourself harm.

I have tried a variety of options, including two stints of gluten free for 6 months each time, and saw no difference in my symptoms, including cognitive issues.

I don't subscribe to the theory that doctors are part of a conspiracy, nor that alter health care providers are all quacks. I think there's an awful lot that is not understood, and that trying things that are relatively low risk and low cost are worthwhile.

I've also told my rheumy that if she can whip me up a placebo that works, I'm good with that, too! 

[ohiolady]

I take supplements which I feel has helped.  Turmeric, Alpha lipoic and Acetyl l cartnine.  Also, vitamin b12 and d.  I take fish oil as well.  I need to cut back on my sugar.  Believe me, I understand the frustration and downright scariness of the cognitive stuff. I am much better now but if I am tired my brain does not work.

Hopefully,  you will get some good ideas from everyone.

Anna

[litliwlowa]

You can imagine how I feel - back to nobody understands what this is like but us..and totally lost, hopeless again. I attend OT PT and speech therapy for ways to deal with changes, but

HAS ANYBODY HAD ANY REALLY GREAT OUTCOMES WITH DIET CHANGES TO DIMINISH INFLAMMATORY  DISEASE OF ANY KIND/BRAIN/MEMORY/GI/ETC?

Well TWO of my doctors absolutely ENDORSE gluten free and fresh organic for ME. Been a year and a half, unlike many of the sjoggies on these boards I do not have brain fog, my persistly distended stomach has been gone for a few months now, I can FINALLY drop the miralax down to 1 caoful every other night and actually have returned sensation in my bowels.

And the rest of my collection of specialists have come on board with that recommendation.

However, I am aware that there are MD's out there who take the position of "hogwash". There was a time medicine was about HEALING, but that has transitioned in my lifetime to "DISEASE MANAGEMENT."

And there are a number of MD's invested in pharma and related investments - in order to reap a profit, the principle of supply and demand comes into the equation. If ALL MD's were invested in HEALING, there would be less profitability in treating symptoms.

Now as for inflammation, so far my SED rate looks good. I also take Turmeric/Curcumin for inflammation.

I wouldn't feel hopeless and sad, although you have a predicament in that it sounds like your husband is not supportive on this issue.

All of our body's are different. There is no harm in given a dietary change a good go and see what happens. But don't expect improvement in a week. I've read it can take up to 3 years for damaged gut to competely heal. And a sidebar, when the gut isn't functioning properly there are likely nutritional deficiencies in the mix.

Example - I would never have thought I was deficient in magnesium and not one of my docs ever even considered it. Now they do check it as I am supplementing. What a huge different in my pain issues that has made. I haven't needed trigger point injections in over a year now.

I do on occasion "cheat" and I pay dearly for it. Seriously - my throat inflames, my stomach bloats like I am 7 months pregnant in the wrong place, bowels shut down and asthma kicks up. It takes over a week after a cheat to recover. Oh and the fatigue knocks me on my backside for days.

But that is me - and maybe it isn't the same for you.

Still - we do need food for sustenance AND nutrition and there can certainly be no harm in giving it a good several months trial run. But do your homework to be sure you're getting sufficient nutritional balance in what you eat.

So to answer your question, considering where I was BEFORE going GF and as much as possible non-GMO (which includes MINIMAL processed foods) - I consider myself to have had a great outcome.

[cccourt1942]

Linda,
   Tsk, tsk.  A different kind of marital discord to say the least.  Hard to keep your diet a secret from your partner.  Hard to have a partner who is a medical doctor when you sit down to eat if you choose to eat differently.
    I am NOT on a specialized diet for inflammation, but I do modify my diet greatly..and much of it fits anti-inflammatory guidelines.   I mention this as I see Prilosec in your signature line.  GERD can modify one's eating habits naturally.  This is going to sound as if I am saying you tell your husband a falsehood...and I am not.  He IS a physician and one thing gastros will give you is a suggested list of foods to avoid..and then  tell you to add your own to the list as each one of us is individual.  Why not say you are not consuming this or that as it doesn't agree with you?  THEN eat your anti-inflammatory diet (as suggested by others on this forum). 
    There are lots of suggestions in this thread for you.  I am going to ask if your husband is concerned regarding your cognition changes.  If you are seeing OT/PT/ST already, someone is suggesting interventions for you.  This is what alarms me the most.  If you TRULY believe your diet will improve your cognition issues, I would say without blinking an eye: Go for it.  I am NOT a medical doctor.  I am NOT a nurse.  (I am a retired speech pathologist!   This does NOT qualify me to say anything about diet or the basis of your cognitive hiccups.)  Your frustrations and fears leap our of your post.  You apparently have your wits about you!!  You are able to express  same easily and with clarity.  You must have all your faculties!!  I'm just sayin'.....you sound as if you are perfectly capable of making decisions for your own well being.  And also...you have received some great suggestions in earlier posts should you need some direction.
     Be thorough when investigating supplements suggested.  Do your own research.  Goodness...all supplements I take have been suggested by medical doctors.  I have a post polio cousin who prefers Eastern medicine to Western...but at our ages (73) (and lots of supplements) she is saying the option of prednisone is sounding better and better to her.  ( Her peripheral neuropathy renders her with zero feeling half way up both her calves.  She continues to be amazingly mobile. While corticosteroids will not change that, it would help her with other "old age" body issues..some brought on by her unusual gait as she almost swings her legs forward when walking.)   Prednisone /Medrol warnings were mentioned in an earlier post in this thread.
     I hope you are having a pleasant week-end and the messages you have received will let you know (right or wrong) there are people in this forum who acknowledge your fears and concerns. 
     Please keep us posted.  Remember--we are  in this together.  Information you derive and post may help someone else. 
c3

[irish]

I just looked through the list of your medications and see that you are not on prednisone nor are you on an immune suppressant. It would be interesting to see how you would do on a burst of prednisone for a moderate length of time. Also, methotrexate, Imuran, or cellcept might help with your cognition.

For some reason the doctors seem to lose track of the fact that vasculitis can occur with autoimmune diseases and this can affect the brain. Also, some of these autoimmune diseases run hand in hand with thyroid disease which can also have concurrent Hashimotos. The Hashimotos can affect the brain. My son has had hypothyroid for many years and has very severe Hashimotos and was recently diagnosed with Hashimotos encephalopathy and is currently being treated with Methotrexate 25 mgm a week. His blood work is slowly improving and his cognition is some better.

The medical community can't get itself "out of the box" and try different things to see if people improve. The symptoms that we have are never ending and I know that no doctor truly can understand our illness and how we feel. If I didn't have this darn stuff I would swear that anyone with all these symptoms was making it up. We all know different. It is like something moved into our body and changed everything--our pain and our reaction to pain, the way our organs function, digestion, hearing,vision, memory,concentration, mobilization,balance, strength,etc. There isn't much that autoimmune doesn't affect in our life and we all learn to keep up such a good front that no one truly knows how lousy we really feel. Hope you can get someone to be aggressive in your treatment. Irish

[SjoGirl]

If the brain fog came on quickly one of the first things you might check on are drug dosages and potential interactions or need to change drugs. I know a geriatrician who says that is the first thing he was trained to look for if symptoms such as yours come on relatively quickly.

If a slower progression it could still be the drugs. I never cease to be amazed at how tired I can get which I am now beginning to think is a side effect of the plaquenil.

As for doctors, you might try to find an osteopath. My doctor is one and was the first to realize that I had systemic issues. She has been my champion and guide for five years and I'm the better for it.

As for diet, yes, it has helped me immensely. I see that you suffer from constipation, I had terrible constipation most of my life, after I stopped eating gluten it was gone. I do still occasionally have a bout if I take iron or don't drink enough water, but it's otherwise gone.

I also don't eat dairy which I found bloats me and causes Rosacea. I eat lots of fruits and veggies and have come to love them. As others have noted sugar can be a cause of brain fog, but you need to see a doc to rule out other matters.

Lack of sleep is one of the greatest contributors to brain fog for me. If you aren't sleeping well talk with someone who might offer help.

[cccourt1942]

If I didn't have this darn stuff I would swear that anyone with all these symptoms was making it up. We all know different. It is like something moved into our body and changed everything--

I was in Jr. High when Invasion of the Body Snatchers was released.  It marked me for life.  Now I know why.   If we extrapolate symptoms posted here along with Irish's statement above----hmmmm....maybe the body snatchers got us! 
c3  (laughter IS the best medicine)

[litliwlowa]

If I didn't have this darn stuff I would swear that anyone with all these symptoms was making it up. We all know different. It is like something moved into our body and changed everything--

I was in Jr. High when Invasion of the Body Snatchers was released.  It marked me for life.  Now I know why.   If we extrapolate symptoms posted here along with Irish's statement above----hmmmm....maybe the body snatchers got us! 
c3  (laughter IS the best medicine)

I needed that laugh today...THANK YOU.

[Head2Toe]

I don't subscribe to the theory that doctors are part of a conspiracy, nor that alter health care providers are all quacks. I think there's an awful lot that is not understood, and that trying things that are relatively low risk and low cost are worthwhile.

I've also told my rheumy that if she can whip me up a placebo that works, I'm good with that, too! 

Couldn't agree more warmwaters.  I've met some very open-minded doctors over the years.  Some of them have suggested I work with naturopaths, massage therapists, chiropractors, acupuncturists, nutritionists, etc.  One of my doctors had a home birth with a midwife long before midwifery became legal in Canada.  When I took Hospice training 20+ years ago, they introduced us to music therapy.  Fifteen years ago I did volunteer energy work in a major (trauma) hospital in BC.

Modern medicine isn't rigid - but some people are.  And just because something is advertised as natural doesn't mean it's good for you.  The healing arts are full of compassionate, intelligent people who want to help - but it's got some quacks, duds, and con men too - with and without medical degrees. 

Follow your intuition linda.  Keep asking questions, listen to suggestions, learn about ALL of your options - and then do what feels right and resonates with you.

Hope you feel better soon!