OT - Mis-Diagnosed with MS

[anon07072023]

They think that I've been mis-diagnosed with MS.  

I went to see a doctor who specializes in rheumatology / neurology yesterday morning and spent 2 hrs in his office with his NP.  I was lucky enough to get into see him very quickly - within a week.  They had initially told me it was going to be a 3-4 month wait.  His exact words to me were, "I think you were mis-diagnosed with MS.  I believe you have a serious illness.  None of the ones I'm thinking of you want.  But there are treatments out there that are getting much better with research."  

My symptoms continue to progress (slowly) and I also have those Lupus-like symptoms I've talked about previously. (I brought in mulitple pics I had taken of swollen ankle, bruising around ankles/feet, arms/elbows, rashes here in there, Lupus like red butterfly-ish rash, Raynaud's syndrome coloring on my toes, & photosensitivity on my arms). I've lost almost 20 lbs. Plus, I still have the weakness in my hips and upper legs with spasticity that doesn't allow me to go to the bathroom on my own about half of the time or more & a host of other symptoms going on.  

I had a CT scan of my abdomen & pelvic area on Monday.  The report showed (for the 2nd time in a row) multiple reactive lymph nodes scattered thru-out the mesentery along with stranding.  And some other things on my liver.  

Yesterday, they took about 8 large vials of blood and here is what he's thinking seriously about and trying to test me for:
Systemic Lupus Erythematosus
Cancer
Polymyositis
Vasculitis
Multiple Myeloma
Myelitis
Antiphospholipid Syndrome  

He wants to see me in a week and he hopes all the blood work will be back by then.  He seems to be very concerned, which I guess is a good thing.  I've tried to tell my neuro so many times my symptoms and how I don't believe I fit into the RRMS category.  Of course, she never listened.....  But at least someone is finally listening.

Thanks,
Kelly

[anon07072023]

Thanks everyone.  :-(  I posted a new thread about it on the forum...

[sandythegeek2]

OMG Kelly.  I'm so sorry.  I don't know what to say.  I wish there was something I could say or do to help you.  My heart feels so heavy with this bad news.  Please keep us posted.  We are all here for you.  Hugs

[summerluvr]

Hi Kelly OMG, that is one of the worst feelings I've had in my life! Being told I had cancer.  I've learned that cancer is now becoming more of a long term illness then a death sentence (sorry this is the only way I can describe the  feeling i had at diagnosis).   Someone on a Myeloma forum I read was diagnosed with carcinoid (on top of Myeloma) It has it's own unique symptoms and the treatment is different (not chemo). Her's is not an operable one, so she takes a special medication which helping.  Hugs your way hun.

[Lulu54]

Cr&ap, Kelly.  I know this is what you were thinking but I sure was hoping you were wrong.  I'll wait for details when you feel like posting more - in the meantime I'm sending lots of hugs and warm wishes your way.

hugs, L

[rendean]

Kelly,
I am SO sorry that your diagnosis is carcinoid  syndrome. I will look for your new thread for my information. Sending prayers and good thoughts,

Ren

[anon07072023]

I have cancer - carcinoid syndrome.  I'll re-post a new thread....  :-(

[anon07072023]

Thanks Sarah and Chris.  :-)

[saucygrl]

Kelly,

Not sure what part of Colorado you're in, but if you ever need a hug, I might be semi close LOL!

Chris

[SarahL2491]

Wow Kelly, you are going to be able to write a medical journal before you are thru with this journey!

You are so upbeat, we could all take lessons from you!

[anon07072023]

Thanks guys.  :-)  
I'm not sure if any of the meds I take would cause the malar rash.  

I guess looking at my face, it could be flushing, too.  I read that Copaxone could cause flushing.  I also know that carcinoid syndrome (cancer) could cause flushing.  Perhaps they want to test me for it because I have other symptoms that match it,  I've unintentionally lost 20% of my body weight - which they are considering extreme.  And I have that fairly recent heart racing issue that they've been tracking where all of a sudden my heart will start racing to at least 125 bpm at rest, and I have low blood pressure, too.  These are all symptoms my mom had - and when she died she only weighed about 58 lbs.    

I guess we'll see.  ???   I don't know....

[supermum_ms]

I'm actually glad you mentioned that point about the EMG - "My EMG & NCV tests came back normal.  He said this is typical of someone with MS, since the EMG tests for peripheral neuropathy and neuro-muscular disease.  And MS is a disease of the central nervous system, which wouldn't show on this type of test." - its how I understood it to be.

It seems to be a common enough test in the dx process for MS though I assume it has to be a rule out type, even if its 'normal' that doesn't mean there isn't still a problem, when they're looking for CNS signs. I suppose normal doesn't necessarily mean normal, it just means its not peripheral.lol

Just wondering if you've looked up the medications you take, to see if the butter-fly-rash etc are possible side affects or not? Are they even considering MS plus another autoimmune condition? It does happen, unfotunately, but it will be interesting what the "rheumatology / neurology" guy still thinks at the end of all these tests.

Dont forget to breath now, close pandora's box GF, there just isn't anything productive with letting in those thoughts, dont let them get in to your head space. Keep breathing and be patient because what you know so far is nothing really new, so chill!

Hugs........JJ  

    

[rendean]

Kelly,

You have been through so much recently and you seem to be holding up pretty well. You know you have us for support anytime.

I, too, would do the 5HIAA as well. Leave no stone unturned , especially for piece of mind considering family history.

We are always here for any hand holding, venting, shoulder to cry on  or just plain witching and moaning.

Hang in there, your results sound promising and I hope that all you have is MS.Funny that one would wish MS on someone but given your recent history, etc.  MS would probably the leas bother some of them all.

Sending ripples of good thoughts and positive thinking!

Ren

[doublevision1]

Oh Kelly - what a roller coaster you're on right now.  Really hoping this gets figured out for you soon!

[anon07072023]

My EMG / NCV tests were this morning. The neurologist that did it is pretty much 100% for sure that all of my symptoms are related to multiple sclerosis. My EMG & NCV tests came back normal.  He said this is typical of someone with MS, since the EMG tests for peripheral neuropathy and neuro-muscular disease.  And MS is a disease of the central nervous system, which wouldn't show on this type of test.  

Plus, he told me that spasticity is related to my central nervous system, which again would be MS.  I was telling him about how my biofeedback on my muscles show a muscle tone/spasticity of almost 14 all the time at PT during "rest" when it should only be about a measurement of one (like my muscles are going to rip themselves off of my body).  Again....he assured me it has to be MS.  Maybe I just have random Lupus-like symptoms that aren't related to Lupus?

I'm going ahead with the carcinoid syndrome 5HIAA test all day/night tomorrow.  Even though I really think that's going to come back negative. At least I know now with the blood tests and the EMG / NCV that there's really just a sliver of a chance of anything else besides MS, which I guess kind of makes me relieved.  Although, I still wonder if it's PPMS instead of RRMS and so does my PT....

Thanks everyone.

[summerluvr]

Still no answer sorry! :(  

Glad you don't have Multiple Myeloma (or related cancers) :)

[AMO]

Dear Kelly,

The confusion is    so diffiicult    time to go through.
I  know you hoped for  some  answer. Someimes no   answer is some kind of  answer.

I     had two times EmG and the other   one of the nerve.
I   thought they were   easy , espicalliy  comparing to some of hte things you go through. Try   to not fret.

Your answers are there somewhere.
Keep faith.  amo

[Sidesteps]

I do know some of those tests take some time to show positive and I understand that sometimes we can over-lapping autoimmune diseases.

After reading everything though, I became concerned that they are not looking at the big picture. I want to look up polymiositis.

Oh - have you thought of going to one of those specialty clinics and getting a once over? My Mom has an autoimmune disease that falls into the Lupus, Connective Tissue Disease but they said it didn't fall into the "typical" and so they would need to send her somewhere on the East Coast to have some very specific tests done to figure it out. We don't have those tests here.

[anon07072023]

Oh yeah, and what about the cognitive & memory issues that I have?

[anon07072023]

I'm with you.  I need someone to look at the big picture. I'm not sure if I have MS plus something else or what.  I know the other things they had tested me for could cause lesions, but I don't think neuro-muscular diseases do.  Plus, I have the brain atrophy like you said.  If I don't have MS, something has to be causing all of this spasticity/weakness, etc.  

My grandma had told me this morning that my grandpa initially tested negative for polymiositis and then they either continued to test him or did more testing or both. And he ended up having it, even though it was initially negative. Same thing happened with my mom's carcinoid syndrome tests intially and the first few times they tested her - she was borderine/high normal.

Yes, carcinoid syndrome is carcinoid cancer.  

Thanks for explaining the needles.  Acupuncture-like needles don't seem so bad I guess....

  

[Guitar_grrrl]

Hey, Kelly,

I've had EMG on my legs, and it's not too bad, FWIW.  The needles are tiny.  Have you ever had acupuncture?  It's not too different than that, and the charge is tiny.

Thanks for keeping us posted.  Sending good thoughts your way...

[Sidesteps]

Hi Kelly - we haven't really "chatted" much but I wanted to reach out after seeing these updates.

The EMG I had wasn't that painful. The doctor thought I had a huge pain threshold but I now realize I think it's because my lower extremities are partially numb. lol ~

I don't know about carcinoid syndrom. What is that Kelly? Cancer?

Also, I thought you had pretty significant brain atrophy.  How does neuromusclular disease or carcninoid syndrome explain the lesions and atrophy? Did they explain that?

I am concerned that they are still not looking at the larger picture here. What do you think?

[anon07072023]

My labs all came back good, which is good and bad. They say they can't believe it after see how I am and also the pics I brought with me last time.  

Now they are thinking neuromuscular disease of some kind.  And strangely enough, they're also looking at carcinoid syndrome and asked if I've ever heard of it.  Um, yah, that's one of the things that killed my mom and they still wonder if my brother has it or not.  

They are going to schedule an EMG on my legs and that region, and from what they told me, it's going to hurt.  
I'm also getting the carcinoid test again.
Thanks everyone

[anon07072023]

Yes, thanks for posting the symptoms.  That does help me understand it quite a bit.  I have maybe about half of those symptoms.  Actually, the drenching night sweats is what led them to do the 1st CT scan.  So, I guess the door is still open for well, I guess, just about anything...

[summerluvr]

Hi Kelly,  My case was pretty rare, Neuro had never heard of any other case of possible ms turning into Multiple Myeloma.

Many of my MS like symptoms (neuropathy in hands, trouble with a leg, facial nerve issue, frequent migraines, vertigo, extreme fatigue - falling asleep at 7pm on the couch and getting up at 9am next day feeling exhausted, foggy vision) were caused by a rare symptom in Multiple Myeloma called Hyperviscocity, which means my blood had so much Myeloma protein in it it could not flow right.  My Oncologist said only about 5% of Myeloma patients have this, which might explain why even at diagnosis they could not figure out my symptoms.

The mare characteristic MM symptoms are frequent infections (like sinuses and ear in my case), bone pain (i had this pain on a rib and could not sleep on one side) particularly back pain from Myeloma bone lesions, nausea, weight loss, nightsweats, weakness.  There can also be kidney failure (I did not have this), or other organ involvement (had a spot in my liver but it went away with treatment).

And then the common issue since MM is a blood cancer, the blood work usually shows the elevated protein levels, anemia, low white, low platelets because of the bone marrow malfunction.  The basic CBC test and a blood test called a SPEP are what they use to monitor me.

Hope this helps!