M.A.S. Multiple Autoimmune Syndrome - My MSAA Community

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M.A.S. Multiple Autoimmune Syndrome

Sierranne profile image
25 Replies

Diagnosed with MS in 2000, I injected betaseron then rebif then finally avonex for 9 years. My body began rejecting the interferons, injection sites were even leaking. I had no place left to poke. I then opted to stop treatment and go as healthy natural as I could. I found Charlotte's Web CBD oil by the Stanley Brothers as I was on heavy seizure meds too. I quit the seizure meds in two or three months and seizure free so far. I am not free of MS to say the least I am still fighting for longevity, I make myself walk even when signals are not communicating. Over the years I was diagnosed first with Endometriosis, then Lichen Planus, Irritable bowel disease, and five other diagnosis. One day something told me look up Endometriosis and MS and see if there is a connection. So low and behold there was, they seem to think all the issues I was diagnosed with over the years are all Autoimmune Diseases. So with that in mind I am able to try everything to boost my immune, as naturally as I can. Yes, I do still have all the symptoms of MS, but for me the interferons just were not tolerated. I wish all who suffer with MS the best of health and never doubt your symptoms. Always get second or third opinions even when told you have MS make them rule it out. If they cannot then you know in fact you have it then you can begin to make plans to give you longevity and good health. :)

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Sierranne profile image
Sierranne
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25 Replies
moonshadoe profile image
moonshadoe

I have tried all the MS drugs as well and everything now is just not working with my body. I am now not on medication and diagnosed as secondary progressive MS. A few months ago I was diagnosed with Celiac disease as well as Colitis, both autoimmune diseases. I have heard that once you have one autoimmune you are open to more.

Sierranne profile image
Sierranne in reply tomoonshadoe

yes thank you for replying Moonshadoe, it said in the articles I read that we are genetically born with the genes, but it takes an environmental trigger to flare it up so when we were little it could have been because we were around cigarette smoking like my dad, or other environmental factors it is a very interesting article this is it :ncbi.nlm.nih.gov/pmc/articl... good luck to you :)

moonshadoe profile image
moonshadoe in reply toSierranne

Thanks for the article Sierranne. I will read it tonight!😁

WAshingtongirl profile image
WAshingtongirl in reply tomoonshadoe

Yes, once you have one, it isn't unlikely to have more. I have Hashimoto's (Graves disease as a kid), MS, and last Dec diagnosed with autoimmune liver disease. Still testing to see if liver involvement is due to lupus. Three's a charm, right?

Sierranne profile image
Sierranne in reply toWAshingtongirl

I have lost count, each diagnosis is a new one. Yes seems once it breaks down, we are open to more. Mine started young too. Sorry to hear all the tests you have had to endure over the years, and praying its not lupus too.

WAshingtongirl profile image
WAshingtongirl in reply toSierranne

Thank you. I have it easy compared to you and many others here. I know it's illogical, but I sometimes feel 'guilty' for doing as well as I am. My heart breaks when I hear/read what many here are going through.

Mannibal profile image
Mannibal

Are you walking? Please reply to margaretgreta1@gmail.com

Sierranne profile image
Sierranne in reply toMannibal

I can reply here I would prefer no private emailing :) I walk some days others not as well. For me it is left foot drop and balance. Also my limbs ...I will be walking and all of a sudden the leg seems to not be there and I crash to the floor.

Bygonelines profile image
Bygonelines

Sierranne I can so relate to the walking and all of a sudden it's like your leg nolonger exists. It has just vanished. I hate that! I have the same issue with my hands. Makes for a difficult time walking, even with a walker. I too have multiple autoimmune diseases. I have type 2 Diabetes, MS, Irritable Bowel, and something else. We are still trying to figure out the something else. I have symptoms that don't fit any of the autoimmune issues or my non autoimmune issues. We will see what it ends up being. We have been testing for 2 years now with no conclusive decisions.

Welcome to the group!

Sierranne profile image
Sierranne in reply toBygonelines

Hi Bygonelines, :) We have lots in common you and I. Please keep me posted on what you learn. I was bitten over the weekend by an Assassin Bug or what is called kissing bug, now I have to be tested for Chagas disease. The MS and Autoimmune issues was plenty to deal with. The bug flies in at night attracted to light. Yes I am now petrified. Maybe time to move.

Bygonelines profile image
Bygonelines in reply toSierranne

Yikes! Assassin Bug! That names sounds terrifying. Where do you live that has bugs with that name? I will pray you do not have Chagas disease! Keep us updated.

Sierranne profile image
Sierranne in reply toBygonelines

I live in the Sierras of California, yes it's a bad one kissingbug.tamu.edu/

Fancy1959 profile image
Fancy1959

Sirenanne, hello it's Fancy1959 welcome and you this wonderful chat Grill. It sounds like you are a take-charge kind of lady. Immunotherapy do not want decision on your own. Please keep us informed as to how everything goes. I would love to know how your MS is progressing four or five years down the road. But don't feel like you've got to be a stranger that long. Please jump on and voice concerns, offeur adviseve opinions just be here everyone who's living with Ms including yourself.

Sierranne profile image
Sierranne in reply toFancy1959

thank you Fancy1959 I will, what I learned this last week should be posted because there is a study concerning this, saying the bites are on the rise maybe due to the weather. I lived in this area most of my life and never been bitten. One must have flew in when door was open at night. Happens very easy here, I had no idea till bitten. Will keep you posted and thank you :)

SepFromWisco profile image
SepFromWisco

Ive heard many others talk about the benefits of CBD oil. Has the one you have mentioned helped with your symptoms?

Sierranne profile image
Sierranne in reply toSepFromWisco

yes it did I was put on anti-seizure meds in 1994 ...even took my drivers license which I understood why, but I saw the Stanley Brothers on 60 Mins where they were working with children so I tried it...I began taking the recommended dosage and each day I would cut back one seizure pill, or every other day I weaned off it with the CBD oil. I have not had any seizures yet. I have been trying to get into neuro to talk about this but appointment isn't until March. Here is a CNN documentary about the Stanley Brothers youtube.com/watch?v=oxrKyje...

Sierranne profile image
Sierranne in reply toSierranne

I would also like to add the reason I did this is because the Tegretol became toxic in my system at the recommended dosage and landed me in code blue room for 8 hours.

SepFromWisco profile image
SepFromWisco in reply toSierranne

Gotcha, thats fantastic. What up MS symptoms? Any benefit on numbness/tingling/nerve pain/muscle weakness/spasms/twitches?

Sierranne profile image
Sierranne in reply toSepFromWisco

no I still have all the MS symptoms, the oil seemed to help the seizure activity. The muscle spasms I have nothing for I cannot tolerate baclofen or diazepam, the oil over time may help other symptoms, will have to see. My main concern is speaking to neurologist before I try anything else.

Sierranne profile image
Sierranne in reply toSierranne

please let me state too, my primary care physician knew my decision and checked me every couple of months. Please never try anything without your primary care physician monitoring you.

SepFromWisco profile image
SepFromWisco in reply toSierranne

Agreed

lightweaving profile image
lightweaving

I too am unable to tolerate interferons.

I have learned of many others who can't do them either.

dogdaddy profile image
dogdaddy

My symptoms of MS actually came about the same time as my diagnosis of Endometriosis.

unofficial dx 1995; officially dx 2001. started with betaseron, then, rebif, then 5 others with lots of reactions... after interferons, Type 1 Diabetes, Hashimotos, Lupus, Fibromyalgia, Arthritis, etc. The drugs were harder on me than the illness. I try to stay homeopathic... acupuncture, cupping, walking and exercising daily (even when the signals aren't working). I have Copaxone, but, I am a bad patient when it comes to the drugs. I feel better on none of them. But, that is JUST ME... I would never recommend that.

Juliew19673 profile image
Juliew19673

I too had Endometriosis in my 30s, that was the worst pain ever. When my Appendix ruptured - the ER doc kept picking up the end of the bed and dropping it, I said yes it "Smarts" but it's not as bad as Endometriosis. Odd, never heard of the autoimmune connection.

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