Anyone here also have RA?: As if all the... - My MSAA Community

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Anyone here also have RA?

Qt314grl profile image
47 Replies

As if all the MS symptoms aren’t bad enough. Yesterday my left knee puffed up for no reason and then today the right one did too!! I literally can’t walk because of it. The Dr suspects RA, so they took a bunch of blood and are running the autoimmune panel (again).

Based on a quick google it does seem like MS and RA (and other autoimmune diseases) can happen together. Anyone here affected by both?

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Qt314grl profile image
Qt314grl
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47 Replies
greaterexp profile image
greaterexp

It does seem as though having more than one autoimmune disease can happen, as if one were not enough.

I’m sorry you’re dealing with this kind of pain. I hope you get some answers and treatment quickly.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Awww let us know how it goes Qt314grl hopefully it' something simple, like you did to much!

J🌠

Qt314grl profile image
Qt314grl in reply to Jesmcd2

Jesmcd2 I’m hopeful it’s just ill timed OA. I’m on pins and needles to get my test results back and so are my feet :)

Qt314grl profile image
Qt314grl

We should hear back on Monday for things like ESR and CRP. Later in the week for RF and others.

cheshcat profile image
cheshcat

I suspect this is why it's been a longer road for myself to be fully diagnosed. I was diagnosed with RA last summer. I assumed that was my MS symptoms and check marked the box - diagnosed! Until I had another "episode" that started in January. Now I'm going through the long process of looking for MS - again. I don't know the outcome. I go for another nerve conduction study in a few weeks and did a bunch of other tests last month.

My rheumatologist said it's not RA causing the MS symptoms. So now I wait. Again.

I'll be thinking of you. Google searches seem to say that there is a connection between RA and MS specifically.

cheshcat profile image
cheshcat in reply to cheshcat

You may have to register at medscape to read this article: medscape.com/viewarticle/53...

ncbi.nlm.nih.gov/pmc/articl...

multiple-sclerosis-research...

Qt314grl profile image
Qt314grl in reply to cheshcat

I did nerve conduction studies earlier this year to look for the cause of my neuropathy in my feet. My nerves aren’t damaged so we think it’s caused by central issues (i.e my brain lesions). I am going to see a neuro muscular specialist as well in June. My MS dr wants to rule out small fiber neuropathy that wouldn’t show up on nerve conduction studies. It’s easier to treat the symptom when we know for sure what is causing it!!

I hope you get some answers soon!

cheshcat profile image
cheshcat in reply to Qt314grl

Qt314grl I hope you get some answers soon too! I was sure I was done looking for answers last summer when I was diagnosed with RA. The not knowing is HARD! I had assumed my neurologist will order repeat MRIs again if the nerve conduction study is negative. I thought that ruled all the neuropathy, I didn't know about the small fiber neuropathy. Oh, well, I'll just keep showing up for all the darn tests! Good luck to you too 🍀💜

Qt314grl profile image
Qt314grl in reply to cheshcat

cheshcat one test to rule out all neuropathy? That would be nice wouldn’t it!! We aren’t so lucky 🤷🏻‍♀️🤷🏻‍♀️🤣🤣

bxrmom profile image
bxrmom

Qt314grl I'm so sorry you are going through this. I hope you get some results soon. Please keep us updated when you can.

Jessie

Qt314grl profile image
Qt314grl in reply to bxrmom

Thank you!

Qt314grl profile image
Qt314grl

Maybe. If ESR/CRP are elevated it’s a start. If RF is positive, then that’s the slam dunk I think.

erash profile image
erash in reply to Qt314grl

There can be false + RF test results...so unfortunately, not slam dunk 🙁

erash profile image
erash in reply to erash

X-rays of joints showing erosions maybe helpful too

Qt314grl profile image
Qt314grl in reply to erash

So I saw a rheumy last year before the MS specialist. She took x-rays of my hands and feet and those were ok. I do have pain in fingers/toes but I’ve been told they are in the wrong joints to be RA. The NP I saw on Friday has RA and she said that was BS as she has pain in those joints too.

It’s all so confusing. I’ve had high ESR and my CRP is consistently in the 20s (I looked at my Jan blood work and CRP was 27.3), so it’s obvious something inflammatory is going on... but what? Grrr

erash profile image
erash in reply to Qt314grl

The more common RA joints are wrists, MCPs and PIPs (knuckles and the closer finger joints) the more distal DIP joints are more likely to be OA osteoarthritis (normal wear and tear arthritis) BUT most people forgot to read the textbooks when they adopted their diseases (I'm being facetious). Truly, I've learned there are no absolutes--esp. When it comes to medicine.

ESR is a chronic nonspecific inflammatory marker. CRP suggests acute inflammation. Yours are certainly high and not something typically seen if it's MS or OA.

Regardless, I do hope you get some answers and relief🌈

rjoneslaw profile image
rjoneslaw

I have stills disease which is the adult form of juvenile rheumatoid arthritis (JRA) I was diagnosed with stills first in 1995 then MS in 2013.

Qt314grl profile image
Qt314grl in reply to rjoneslaw

I’ve never heard of that! How crazy?! Stupid immune systems...

rjoneslaw profile image
rjoneslaw in reply to Qt314grl

I was diagnosed as an adult so it’s stills disease but if I was diagnosed as a child it would be JRA

TonyiaR7 profile image
TonyiaR7 in reply to rjoneslaw

On my goodness. I have a long prayer tonight. 🙏🏽

Kenu profile image
Kenu

My wife has Chrons, another auto immune disease and now has rheumatoid arthritis😢. Of course I have MS and stage four throat Cancer 😐. We are quite the pair to draw too. Never thought either of us would have these problems, let alone both of us🤷🏼‍♂️. All we can do is pray and think positive 👍🙏🐾 Ken

itasara profile image
itasara in reply to Kenu

Hi Kenu, I have read that if one person has an autoimmune disease others in the family could have them. I think that’s so true, although there are so many autoimmune diseases around today so many people have them.. my daughter has MS diagnosis before I was at a much earlier age than I was. My son after 12 years of suffering his phone he has Crohn’s disease. I have a daughter with thyroid issues. So whatever the influences are, it’s typical. So sorry to hear about the problems with yourself and your wife.

Kenu profile image
Kenu in reply to itasara

Thanks for your concern 🙏Ken

TonyiaR7 profile image
TonyiaR7 in reply to itasara

🙏🏽 sorry to hear your challenges within your family as well as yourself.

rjoneslaw profile image
rjoneslaw in reply to itasara

That’s not true just cuz one person has an autoimmune disease doesn’t mean other family members will have it. I’m the only one in my family with it. It seems like I get to have everything and my family is healthy

Oh the joy

Qt314grl profile image
Qt314grl in reply to Kenu

Kenu I have seen your story and I am in awe how you stay positive. I try to as well but man it’s hard some days. I’ll put you and your wife in my prayers.

TonyiaR7 profile image
TonyiaR7 in reply to Kenu

Kenu you are definitely in my prayers. My husband had end-stage-kidney failure several months after my diagnosis of MS. And we had an infant that wasn’t thriving, premature lungs and allergic to the world. My heart has heard so much suffering today. Do take care of yourself.God bless. But we all are doing decent, considering.

Kenu profile image
Kenu in reply to TonyiaR7

Thank you for your thoughts 👍🙏🤷🏼‍♂️ Ken

TonyiaR7 profile image
TonyiaR7 in reply to TonyiaR7

We have been blessed greatly, God did get us through our trials and tribulations. My husband did get a kidney transplant after 7 year wait, and has the same kidney now for 22 years. My son who was sickly, graduated from UPENN and is an engineer, our eldest son who has had many emotional and other problems, is in Teen Challenge for recovery of addiction and I had done more than I could have thought with dealing 30 years with MS (this July 7th, 2018). So this is my meaning we are doing decent. Not perfect. But decent life within the love and support of many and with God. Without him we wouldn’t be here. Praying for you!!

nitramjd5992 profile image
nitramjd5992

I was first diagnosed with RA in the 70's! Diagnosed with MS 2007! It's not been easy, but I keep going! Moving is the key! I could gie in at times, but I refuse! Hope everything works out for you!

Qt314grl profile image
Qt314grl in reply to nitramjd5992

I’m sorry you have to deal with these crappy diseases too. What meds do you take? They gave me a steroid shot in office and a medrol dose pack to taper steroids down. I really don’t like steroids. I’ve done the iv solumedrol for MS but I feel like oral steroids suck more than the iv blast.

TonyiaR7 profile image
TonyiaR7

I have osteoarthritis (OA)in my knee and ankle. I don’t have RA. It is causes great grief especially when it cold and damp. I can empathize. I have a contracture in my knee due to my OA. I am starting neuro PT this week and have been stretching despite the pain, swelling or severe spasms/nerve pain that accompanies it. Here, the barometric pressure changed greatly. We had temperatures in the high 80s and now we are in the 40s.

I am sorry you have RA with MS. As we age, many will get other diseases like diabetes, RA and the sort. I hope the doctors can find some relief for you and the inflammation in your joints. Prayers, and compassion goes to you. Get a nice warm bath and apply some ice.

Qt314grl profile image
Qt314grl in reply to TonyiaR7

Hidden I do have OA in both knees but they haven’t acted up in over 10 years. And they never did at the same time and this bad. I’ve had knee surgery on both and even after surgery they never swelled this bad. I could always walk, albeit it was usually just one knee at a time.

BUT I am holding on to hope that it was a freak OA swelling caused by ridiculous weather changes here too. I guess we will see what the blood work shows.

I’m sorry you have OA. It sucks!

deradakov profile image
deradakov

Yes. I have had MS now for over 33 years and I was told around year 5 I can expect other illnesses that have the "is" at the end of the name. I have arthritis I battled ulcerative colitus for 15 years before having a colostomy surgery. Just live your life as well as you can and I am sure you will win in the end.

Qt314grl profile image
Qt314grl in reply to deradakov

deradakov so funny thing is my interstitial cystitis is acting up now too!! Stupid “itis” diseases.

Ulcerative colitis sounds miserable. I hope you at least get some relief with the colostomy bag.

33 years with MS, wow! Do you take a DMD? What are your secrets to living with this monster?

deradakov profile image
deradakov in reply to Qt314grl

I have tried every MS drug and the worse was Tysabri. Last one was Ocrevus which I personally should not have tried, and my lyphocyte count keeps dropping so I had to stop that one too. I had antifolatic shock on Copaxone but I spoke to my neurologist and decided taking a chance on Copaxone was better then the side effects of MS drugs. I can't really say how I have kept going, and if I listen to my neurologist I shouldn't be able to walk. I just hated not being able to walk for 5 years so I forced myself to get up and move and now I walk my German Shepherd puppy daily which helps. I exercise dialy and I can't say I am totally sain but it is better then the alternative. I grew up with a mother who had MS and she didn't take anything for it until after I came down with MS and even though she wasn't disabled until my father died she gave me strength to keep moving and not letting this damn disease decide how I will end up. I haven't worked since 2000 but other then that I keep as active as possible every day. My wife of 35 years has really helped with dealing with the bad time

Claudmich profile image
Claudmich

I have RA also, I call it my RAMS😂 two wonderful autoimmune diseases great together! Lol!

cheshcat profile image
cheshcat in reply to Claudmich

Claudmich can I ask which one you were diagnosed first? or how your diagnosing timeline went? Sorry you have both 💜

Qt314grl profile image
Qt314grl in reply to Claudmich

Claudmich I’m also interested in hearing your story. It seems like both of these diseases are sometimes difficult to diagnose. I wish someone would develop a simple blood test 🤣🤣 but I suspect that’s a 🦄

How do you deal with both? Do they flare at the same time? What meds do you take?

bavery207 profile image
bavery207

Qt314grl I am the oldest of 3 girls. I do not have RA but my youngest sister was dx with RA about 3 yrs. ago right after my MS dx, And the middle sister is waiting to see a rheumatologist to confirm her possible RA dx. My youngest sister and I both have thyroid issues and essential tremor.

Qt314grl profile image
Qt314grl in reply to bavery207

bavery207 I’m so sorry. It does seem these autoimmune things have a genetic component. My mom was initially diagnosed with MS as well but they “took it back” after many serial MRIs. She has seizures and now how weird scalp, ear and eye pain issues. Her ANA just came back positive 🤷🏻‍♀️🤷🏻‍♀️🤷🏻‍♀️

Wizardsmom profile image
Wizardsmom

I have RA..but it is early and I'm working on an anti-inflammatory diet which IS helping me to feel a little better. I also have heard that auto immune diseases can go together. I have thyroid disease as well.

Qt314grl profile image
Qt314grl in reply to Wizardsmom

Wizardsmom i have the Wahl’s protocol book for MS diet. I do believe diet changes would help me but I just haven’t made the changes. I feel like crap all the time and all I want is comfort food...not the best game plan.

What were your symptoms/test results that got you the RA diagnosis?

What website or book do you recommend to start working on anti inflammatory diet goals?

Wizardsmom profile image
Wizardsmom in reply to Qt314grl

I am on a keto diet. It is a diet in which you eat 75% good fats, 20% protein, and only 5% good carbs ( approximately). I have been eating this way for 6 weeks, have lost 10 lbs, and my joint pain is improving. I have been using recipes I find on Pinterest. I haven't bought any books on it although there are plenty out there.

As far as my RA, my doctor ran a test called Vectra, which shows inflammation. This doctor was a rheumatologist though. I went to him because I have IS as well. He also did xrays and ultrasounds.

Let me know if you have any more questions. I would love to help you.

Wizardsmom profile image
Wizardsmom in reply to Wizardsmom

Sorry, type o, I have OA also.

Claudmich profile image
Claudmich

I was young when my mother was told that I had RA I took cortisone pills for the pain for many years. I stopped taking them because I didn’t think they did much good. I would just take Tylenol when I needed to quiet the pain a little. That’s all I did for years got married had two children had issues with my obs and didn’t go to a doctor for 37 years except eye doctor. He is the one who sent me for my first MRI, did one on my right eye and he also had one done on my brain. Long story made short when back to his office to get results and he told me the news had to get PCP, Neurologist, and see a thyroid doctor to make sure the Graves’ disease wasn’t caused by thyroid problems. Went to a neuro that knew nothing about MS and just kept telling me that my symptoms were not MS because you don’t have pain with it lol am now with a doctor that is fantastic with a great team.

mrsmike9 profile image
mrsmike9

I was diagnosed with RA probably 30 or more years ago. I've been diagnosed with MS only 4 1/2. I was treated with methodextrate (sp?) which pretty much knocked it into remission. Every once in awhile my knuckles on my hands will swell and get painful. Then steroids do pretty well with that.

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