SOOO CONFUSED

[Unraveled]

I was diagnosed with MCTD or Undifferentiated connective tissue disease in 2014. More recently, doctors have been telling me that I either have SLE or MS. An MRI of my brain this past week showed "tiny spotty periventricular white matter FLAIR hypersignal intensities". My bloodwork has elevated CH50, my ESR is always high and so is the ANA titer, elevated C3 as well as elevated ssDNA and SSB. I have several symptoms of SLE and of MS. SO CONFUSED AND CONCERNED. I am not trying to substitute this for doctors, but would be interested in others thoughts.

[starlight5]

I am not familiar with the treatments for MCTD but it must be frustrating and scary to find your diagnosis may be changing after 6 years. Hopefully your drs are able to confirm a diagnosis soon so you can start the correct treatment.

[Unraveled in reply to starlight5]

It is extremely frustrating and at times scary. Especially when I am having extreme dizziness and can't seem to lift my foot. Thankfully it seems to pass, and I can walk normally, but I never know when it will occur. Thank you for the reply.

[Violonchelo]

I am not a doctor. Sorry

[Unraveled in reply to Violonchelo]

Just curious if others had the same going on or not with the blood work and ideas on how to get a specific diagnosis. I do appreciate you not trying to google doctor me though 😉

[Violonchelo in reply to Unraveled]

The covid19 vaccine has been very fast in different kinds. But MS follows without a real vaccine for us , and we follow so many many many years and years years and years . Who has the answer for it ?

[nwfrugalista]

I’m in a very similar spot—once diagnosed SLE by one doctor but then MCTD by another rheum— after several +ANAs over a few years starting in 2014. Symptoms of both MS and SLE as well. My rheum sent me to a neuro for a full work up (to diagnose or eliminate MS) and they ended up finding a brain tumor instead (wasn’t what either the doc or I expected to say the least). Had the small, ‘benign’ mass removed in 2017 but neurological symptoms continue and have even worsened (plus since surgery I have developed POTS, a form of dysautonomia). Suffer from vision issues, horrific daily nerve pain and have continued to test ANA+. My rheum has left practice and my neuro moved, so now it’s my PCP and I trying to unravel this and find new specialists who can help. I’ve racked up several ‘secondary’ diagnoses without ever being settled on the primary one. I’m exhausted and have pretty much given up hope of ever really having a true diagnosis (or more likely diagnoses). The best advice I can give is to push your primary care doctor to get you into neuro and rheumatology specialists who really focus on auto-immune diseases like SLE and MS, and who will be willing to communicate with your primary doc and each other in a cooperative way (like a Mayo or Cleveland Clinic team approach). Best wishes to you, I am sorry to hear a similar story to mine as I wouldn’t wish my journey on anyone.

[Unraveled in reply to nwfrugalista]

So sorry that you had a tumor and had to go through surgery. I have seen 2 Rheumatologist so far and am currently seeing a Neuro. She is the one that ordered MRIs of my brain. A spine surgeon had referred me to her. He said he couldn't shake the feeling my problems were something more. Unfortunately, he has since retired. PRAYERS TO YOU AND THANKS FOR THE REPLY.

[mrsmike9]

Prayers for peace and answers.

[Unraveled in reply to mrsmike9]

thank you

[Raingrrl]

Being in limbo is the worst! It took me almost a year to get a proper diagnosis and a slew of doctors. And I had text book MS test results at the time! A year is short compared to what others here have gone through.

One thing I’ve always been told is that a positive ANA is generally indicative of an autoimmune disorder other than MS. And the higher it is, the more likely that seems to be. That doesn’t mean it can’t be MS plus something else, it just means that a positive ANA is not usually looked for in the MS diagnostic process.

It’s unfortunate but many things share symptoms with MS so sometimes doctors need to rule out a bunch of other things first. nationalmssociety.org/Sympt...

Good luck to you and I hope you get the answers you need soon.

[Unraveled in reply to Raingrrl]

The Rheumatologist at one of the best hospitals in our state said that my ana titer was one of the highest he has ever seen, and he has been doing this for 35 years. He is the one that said I had MCTD. Limbo is a bummer. Glad you finally got diagnosed Eventually they'll figure it out for me I guess.

[Klutzy]

I understand how awful it is in limbo since I’m living it. Similar to you, I have neurological issues & rheumy-autoimmune issues. My neurological issues started many years before the other ones. A month or so ago, I tested high for ESR and CRP blood tests for inflammation (low end of high). Years ago, I was diagnosed with neuropathy but that doesn’t account for all of my neuro issue.

Someone on a different sub forum on this website told me to check out Sjogrens. It’s not just about dry eyes/mouth. It can mimic MS and can be associated with Lupus.

In trying to figure out what is happening with me, I found a site, see below, where a whole bunch of people were initially diagnosed with MS, only to later be rediagnosed as Sjogrens and a few had Lupus with it. My autoimmune issues cane less than 6 months after my neuro issues rapidly progressed, so I often wonder if they’re connected. Maybe yours are or aren’t. I don’t know.

sjogrensworld.org/forums/in...

sjogrens.org/

Good luck in getting the correct diagnosis from doctors.

[Unraveled in reply to Klutzy]

Definitely ready for limbo to be over! Thank you for the link. A specialist did run tests for sjorgens, and told me I didn't have it. Another doctor told me "If it looks like a duck and quacks like a duck, then it's a duck." While I totally get what he was saying, there are as you said things that mimic one another. This is the first time seeing a neuro and they are running more tests, so I am hoping this will be a final and correct diagnosis. I wouldn't wish this on anyone, and am sorry you are dealing with similar issues of your own. BTW, I like to use the Johns Hopkins website as well as reading medical journals online.

[Klutzy in reply to Unraveled]

I understand. And I also read a lot of medical journals and JH site along with Mayo. But I also like to read others experiences.

When I saw neuro about 5 years ago, I had every symptom of MS except vertigo. Then about 2 months ago, I had vertigo (felt I was spinning) for 2 days straight. Neuro saw I couldn’t stand on a leg and couldn’t do tandem gait (walk a straight line). And I swayed even before closing my eyes for Rhomberg test, and he saw slight intention tremor. Yet neuro was very young, that’s why I call him Doogie Howser, and he dismissed my symptoms as in my head and stress, besides diagnosing my with neuropathy. Now 5 years later my neuro symptoms have progressed and to stand, I have to keep my legs farther apart to maintain balance and I walk like a drunk when Im tired. But I rarely drink.

So I hope you get better treatment from neuro than I did. I’m making appointment to see different one, and my chiro sajd she”d refer me me to get brain MRI, if new neuro won’t based on my neuro symptoms. But first she said I have rheumy for my rheumatic issues and high CRP and ESR blood tests.

Best of luck to you!

[Iona60]

I was diagnosed with MCTD at Johns Hopkins just one month before I got diagnosed with MS at the Mayo Clinic. Mayo then said that I didn't have MCTD. Sometimes, I think it takes your body a while to work your way into one disease or another. Lupus, MS, APS, MCTD seem to all share similar symptoms. Limbo is horrible! I read a list of all my weird symptoms to every doctor that I saw for 2 years before I was diagnosed with MS. Hang in there and keep pursuing until you get a diagnosis that fits and everyone agrees on.

[Unraveled in reply to Iona60]

The doc that diagnosed me with MCTD did say that some people develop into something else, while others stay the same or go into what some call remission. He said that with levels of ANA titer as high as mine and other symptoms, he thought I would develop into something else and he said his bet was on lupus. So what you say does ring true...sometimes you just have to develop the right symptoms or antibodies or whatever and develop the disease more fully I suppose.

[TonyiaR7 in reply to Unraveled]

People with Lupus (also have SLE and high ANA) where the Lupus is attacking the myelin sheath or white matter. So some folks have Lupus where it attacks skin, Kidney, brain, lungs). My sister-in-law had problems where Lupus that caused problem with joints and skin. Unfortunately, she was playing tennis and end of having difficulty with breathing; the lupus attacked her lungs. She pushed herself plus they put her high dose of steroids which caused her to be manic or more strong willed. Her rheumatologist tried to get her to take things simpler. But she was determined to play tennis against doctors wishes. Steroids didn’t agree with her. So this is why it is hard to make a mS diagnosis sometimes. I have severe spasms and they were concerned I had another illness, stiff man syndrome. People with MS, tetanus, muscular dystrophy…. have very symptoms - rigidity and spasms in trunk, legs and arms. We keep testing for this disease. But I still do not come up with a high ANA ….. and other tests. Border line. So don’t let you get to frustrate you. Deal with the one that is most prominent and then the lesser. I get Botox injections and focus is on my stiffness. My MS is progressing slowly, according to my MRIs. So no Ocrevus for me. My neuro that wants to find a better DMT with less side effects. I am on Copaxone. My stiffness steal progresses.

[Iona60 in reply to TonyiaR7]

TonyiaR7 , I was on Copaxone for 10 years. I wish that I had switched to Ocrevus sooner. I progressed slowly on Copaxone, but I think that O has halted my progression. Many neuros are prescribing O as a first line treatment now. Best of luck.

[kycmary]

So sorry for your problems, I will be praying for you.