Mini update

[cheshcat]

I have been waiting not so patiently for my rheumatologist appointment at the end of August after my new neurologist felt my MS tests were inconclusive and would be repeated next spring.

I started feeling really poorly again several weeks ago, I mostly sucked it up because my body makes zero sense anymore and I'm use to just ignoring things as best I can.

But my hands started to get red and swollen at the knuckles and I was running a low fever for weeks. So I went back in, again. They ran all the Rheumatoid tests and they all came back positive. So I guess I have Rheumatoid, I'm taking prednisone and then mobic after my 6 days of prednisone to hopefully get me through till I see my rheumatologist.

I don't see how it explains my neurological symptoms but I'll take any direction. My ANA is now positive. I have a lot of inflammation right now in my body (so says blood tests).

I'll update again once I finally see my rheumatologist but maybe I truly don't have MS.

I am still worried about Lupus since I have bladder problems and the rash across my nose and cheeks but I'll need to talk to my rheumatologist about how they tell the difference between Rheumatoid and Lupus. My primary care is great but doesn't know Rheumatological like a rheumatologist will.

I think about you all often! I honestly don't know how I would have made it through the last 6 months without you, no matter what ends up being wrong with my body. This whole being chronically sick thing is one of the hardest things I've ever had to do, I haven't taken to it well.

[jimeka]

cheshcat its not a nice thing for any of us to come to terms with, I am sorry 😐 I wish I had an answer for you, but I know that there are now 1900 of us on this forum who probably can relate in some way. I hope and pray that you get to know soon but I hope that you will keep in touch whatever way your dx goes. Time goes so fast these days, I was joking with my grandson yesterday morning as we turned the calendars over to July. It's his 9th birthday on the 14th, I said I cannot believe where this year has gone, and I accused him and said it was his fault , he was wishing my life away wishing his birthday would hurry up. He did laugh, so we started the day on a funny note. Well, I hope things improve for you, take care and keep us posted, blessings Jimeka 🦋 🌈 🤗

[cheshcat in reply to jimeka]

Time does go by so quickly 😊 thank you, Jimeka, I'm sorry for all of us dealing with a body that no longer behaves as it should and has to make life changes and make room for a chronic illness.

[dianekjs]

I'm sorry you're struggling with all of this. Rheumatoid isn't one disease, but lupus is one of many rheumatic or rheumatological diseases - it's a category, if that helps. Others are rheumatoid arthritis, systemic sclerosis or scleroderma, Sjögren's syndrome, and vasculitis, to name a few. It sounds as if it could be lupus, as lupus is known to be one of many MS mimics, even on MRI scans. I hope you get some clarity and effective treatment soon. Best of luck and I hope you'll keep us posted.

[cheshcat in reply to dianekjs]

Thank you ❤️ I spent most of last year searching MS and at Neurologists office, I wasn't expecting such a big change. I'm wondering about vasculitis because I've had 3 blood clots in my right leg (surface, not DVT) in the last 9 months. I have so many question for the rheumatologist! I'll need to come in with an organized list 😉

[dianekjs in reply to cheshcat]

Overlapping autoimmune conditions are also very common. If you have a true butterfly rash, intermittent fevers, positive ANA, and neurological symptoms, and joint pain/swelling, those are all consistent with lupus. If you want to post your test results here I may be able to help you to interpret them.

[cheshcat in reply to dianekjs]

When I get to a computer I'll log in and get my results off my patient portal. I've tried searching but it's hard to figure out and they just want me to go see my rheumatologist. Well me too 😉

[cheshcat in reply to dianekjs]

06/22/2017 antinuclear antibody Positive Negative ANA Ser EIA-aCnc

06/22/2017 antinuclear antibody, titer 1:160 ANA Titr Ser IF

06/22/2017 cardio CRP (C-Reactive Protein) 12.3 mg/L 0.0-10.0

06/22/2017 Anti-Cyclic Citrullinated Peptide Antibodies 35.0 U/mL <=6.9

06/22/2017 erythrocyte sedimentation rate 19 mm/hr 0-20 ESR Bld Qn Westrgrn

[cheshcat in reply to cheshcat]

The "negative" was the "value" for the ANA.

[dianekjs in reply to cheshcat]

Well, your ANA at 1:160 is positive, but it looks like the individual antibody tests they screened for were negative if I'm interpreting your report correctly. Portals don't usually give all the details so it's a little hard to be certain. CRP is elevated which basically indicates there is inflammation present. the Anti-cyclic C peptide Antibodies were significantly elevated and these are positive in rheumatoid arthritis. Have the also tested for RF? It's a bit unusual to test for one without the other. Your Sed rate is in range for now. Your portal doesn't say what specific antibodies were screened, so I can't tell if they checked for lupus indicators or not. At this point is looks like you may have or may develop Rheumatoid arthritis. I hope they are also checking for lupus, as the two conditions can overlap and your symptoms are consistent with both. I hope you feel better soon and will keep us posted on how your appointment goes and what you find out.

[cheshcat in reply to dianekjs]

Thank you 😊 I see why the doctors didn't always put your test numbers available without specifically asking for them. Honestly they are hard to figure out. For me at least. I basically just "copied/pasted" from my portal. That's all the info they gave. It's a little funky because it has my number, then the range, then the test used (I think). I actually thought my ANA was negative because I looked on my phone and just saw "negative" but that's the value, not the result. My result is "positive", which I figured out later in the day when they called to tell me I had tested positive for Rheumatoid. My symptoms they can see match Rheumatoid, so now I guess I'll just wait. I suppose I've waited almost a year I can wait a month until someone gives me a firm diagnosis. At this point at least I know I've not suddenly developed a psychiatric condition. I certainly questioned my own sanity!

[dianekjs in reply to cheshcat]

Yes a titer of 1:160 is a definite positive value, so you are ANA positive. It is rheumatoid arthritis (not just rheumatoid) that you may have, depending also on a blood test for rheumatoid factor or RF, which I don't see in your results. If your clinical symptoms are clear, it may not be necessary at this point, however. The terms "rheumatoid" or "rheumatic" apply to many autoimmune diseases. With early treatment, rheumatoid arthritis can usually be well-managed. Make sure you are seeing a rheumatologist with expertise in this disease. Best of luck to you!

[cheshcat in reply to dianekjs]

Thank you! That makes sense! I'm sure I'm using them interchangeably, not knowing the difference. My Mom has Rheumatoid Arthritis. I had made the appointment before I even knew RA was on the horizon, just to try and figure out what's wrong with me since my MS test was inconclusive. If I don't like this one, I suppose I'll switch to my moms doctor, who does specialize in Rheumatoid Arthritis. I'm just hoping this was is good. I'm tired of seeing doctors, I want to just settle with one.

[cheshcat in reply to dianekjs]

dianekjs

You are right, I found two more tests that were a little farther down.

Looks like the rheumatoid factor is negative. I sure hope the rheumatologist has some ideas

06/22/2017 rheumatoid factor <10 IU/mL intl units/mL <=14 Rheumatoid fact Titr Ser LA

06/22/2017 uric acid, serum 5.0 mg/dL 2.6-6.0 Urate SerPl-mCnc

[Raingrrl]

At least you are starting to get information in what seems like the right direction @cheshcat! The rash does sound like one of the hallmarks of Lupus and with a positive ANA that is a possibility. There is a lot of overlap in the symptoms between the various autoimmune diseases and that is why its often difficult to get the diagnosis just right.

And yeah...the chronically sick state of being is a challenge that people on this forum know all too well as @jimeka said. We are also all affected differently and use different ways to cope. You will find your own coping mechanisms to put in your 'tool kit' as time goes on. Its one of the valuable things about forums such as this one that we can learn from each other. Hang in there and just take one step at a time.

[cheshcat in reply to Raingrrl]

Thank you ❤️ that is one thing you all have been able to help me with on this board, even if we don't share the same disease, the knowing what it's like to not "be well" most days. My mom tells me I'll get use to it but I'm still trying to figure it out!

[Morllyn]

Just a thought cheshcat , I am not sure about this but, if the rash is a typically Lupus symptom, and I do not know if it is permanent or will go away, you might like to take a picture of it. I am not saying that the Rheumatologist will not believe you but it cannot hurt to be able to show him what it looks like, just so he doesn't think it was just an allergic reaction to something else. I hope I am getting across what I mean, my mind is a little jumbled.

[cheshcat in reply to Morllyn]

Thank you! I had thought if I should take a picture. I had actually taken a picture of my hands and figured I'd show the rheumatologist but my mom said no, go in - those hands are too bad to wait. Thanks for idea to take a picture of my face rash too!

[Jesmcd2 CommunityAmbassador]

You know you can stay here cheshcat to😊 you are more than welcome!

Sorry your still on the never-ending road.😢 It does sound like you are getting somewhere through.

Keep your chin up!💕

J 🌠

[cheshcat in reply to Jesmcd2]

Thank you so much J ❤️❤️ you are all so sweet here, I couldn't not check in with you all 😊 and I hope my never ended road is coming to end and we I can start talking to doctors about treatment!

[angelite]

Hi Cheshcat and thanks for the update. Much food for thought and some definite test results at least. Hopefully you are now on the road to proper investigations and will soon have some answers. I hope you don't have Lupus or MS ( heck, I hope I don't have MS either ! ) but what will be will be and I have no doubt that you will find your own coping mechanisms, judging by how well you have adapted so far. Please do keep us informed ... as Jes would say 'Inquiring minds need to know' : ) Angela x

[cheshcat in reply to angelite]

Thanks Angela 😊 it is a journey for sure! And one I think all of wish we didn't have to make. It's so helpful to know people on the same journey. ❤️

[Sukie427]

cheshcat your still being in limbo really sucks. I sure hope you get an answer soon. I hope things improve for you and somebody finally solves the riddle. Do your docs communicate with one another? If they don't, you need to get them to start doing that. It doesn't help for the neurologist not to know what the rheumatologist is doing and so on. They should all be working together to try and get you some answers and more importantly, some relief. You're in my thoughts and prayers. Sukie427

[cheshcat in reply to Sukie427]

Thanks Sukie! The one out of the loop is the Neurologist, you are right, I need to make sure they are communicating. I sort of forgot about the neurologist with all the rheumatologist talk.

[greaterexp]

cheshcat , I'm sorry you've had so much pain and swelling on top of everything else. I hope you can feel some relief in getting at least a partial answer.

I hope you can get all the answers you need and that you simply feel better quickly.

[cheshcat in reply to greaterexp]

Thank you! My hope is once I have the right diagnosis, medication that works will, hopefully, not be too far behind!

[erash]

cheshcat good to hear from you but sorry you're not feeling well. You can have both RA and lupus. There is something called overlap syndrome. Obviously I hope you have neither. Your mom has RA, I think?

My ANA is +, but my confirmatory tests are neg. ms can cause false + auto-immune test results.

Hope the steroids are giving you some relief 💐

[cheshcat in reply to erash]

My Mom does have RA. About 30 years now but like all of us I think, I remember her having symptoms when I was a small child and she was in her 20s (her feet would cramp and I would "pull" her toes to help). I always had "something" but you can live with a lot I think in your 20s and 30s. It's all caught up to me now at 45. My mom was late 30s when diagnosed, about 6 months after leaving my father (goof riddance!).

My PCP said they can't diagnose me, that needs to be the rheumatologist but said my other tests besides ANA were positive for Rheumatoid (I came in with red swollen hands at the knuckles and low grade fevers. I had a low grade fever at the time I came that day). So they only did the Rheumatoid panel. There's been some discussion if i have a Lupus rash or Rosacea. My dermatologist felt it was Rosacea. My primary care doesn't want to guess. I am sensitive to the sun but that could be either rash. I also have scalp sores and are those dermatitis or Lupus? I guess I just have to wait for my rheumatologist and hope he has some answers!

I'll be so glad for the "treatment" phase of getting diagnosed! It will be a year in August since I really started having problems and I have no idea how anyone can live in limbo for even longer periods. My heart goes out to everyone not knowing.

[erash in reply to cheshcat]

Hang in there cheshcat

August is only a month away. 🌈

[cheshcat in reply to erash]

So true! Thank you @erash 🌈

[ittygirl]

I'm so sorry you're going through all this. Our bodies can act like demanding children wanting to shut us down at times. I'm hoping you feel better soon. You're in my prayers, cheshcat.

[cheshcat in reply to ittygirl]

Yes! Such a demanding child and dang can that child throw temper tantrums when it feels slighted 😉 take care of me or else!

[ittygirl]

You got that right!!!!! I've been having more problems and wouldn't you know it, my neuro moved away. I saw a new neuro last week. She is awesome! I'm going to have lots of testing done...kinda like was done when I was first dx'd. I don't mind. I'm sure she'll get to the bottom of this. TAKE THAT MS...YOU WON'T WIN!