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
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.
Glad to hear you found a doctor who is willing to listen to you. Unfortunately you may have another disease but thankfully there are treatments out there for it and hopefully you can get on the right medications so you can start getting some relief.
I hope they get the results back and get back to you right away, so that you can get some answers that are a long time coming.
I am sure that you are full of different emotions at the moment, but just know that you finally have a doctor working with you and that is the best news of all.
I'm so glad someone is listening :) My thoughts are with you while get through these tests. I hope they find out exactly what one it is, and that you can indeed be treated, and healed. You go through so much already. How are you feeling about this turn?
I have been watching the forum hoping to hear how you got on and sharing your anxiety as I wait to take my daughter to a rheumatologist next wednesday (on my birthday). So I really feel for you in the next week while you wait for all your results. I am no doctor but it does not take a genius to look at all your photos and know that something is going on in your body that is not right. I did not think this looked like MS and I guess it is just best not to speculate. It is easy to look all those potential illnesses up on the internet and all this will do is raise your anxieties about what may or may not be. I am a fine one to talk as this is what I have done and I realise it is not helpful. It is just incredibly hard sitting with the unknown and waiting patiently. I have never been good with not knowing things and it is about control. I sense that you have waited so long that you have more patience than me and I am just glad for you that you have found someone who is testing you thoroughly. It may be an idea to think about what he said at your appointment and take any questions that you have
written down. Meanwhile just to say sending you love, support and I do believe in hope, even when things feel fairly bleak.
I've learned, especially after watching all that happened with my parents and how the doctors wouldn't listen and the scans missed their tumors. I've become a squeaky wheel when it comes to my health.
I definitely think I'm heading down the right path now. All of the diseases / disorders that they have in mind are the ones that stood out to me, too. I do feel a bit overwhelmed. The fact that this could be cancer really scares me. Obviously, I want to have a CORRECT diagnosis. Whatever that might be.
Hi Kelly, i so didn't expect to see this this morning, wow girl you must be in a spin!! Firstly HUGS!!!!!!
Secondly - take that deep necessary breath, and hold your horses gf, you dont know for sure its any of those things right, no point jumping to the uglyiest one on the list. It still could be none of them, wait until the dr's have finished fishing and then let your self have a much needed freak out, wait first though :-)
If I was someone who gambled i'd of been considering putting my money on Lupus, not much causes that butterfly rash and your combo of sx but you've got brain lesions right, so thats suppose to be 'rare' in Lupus. So i'm thinking its possible the Lupus like sx could be a drug induced reactions over a condition thats quite rare and drug reaction is the most common cause of the rash. hmmmmm its still possible to have MS and another autoimmune condition, lol can you see how there isn't much point in worry too much until more facts come in, its sort of like chasing your tail until then.
I'm not sure the lymph node findings exactly have any huge significance, my google brought up this.....
CONCLUSION. Incidental finding of mesenteric lymph nodes is common, reflecting more widespread use of thin-collimation MDCT and PACS workstations. In general, these nodes are small, measuring less than 5 mm. Such nodes when found in an otherwise healthy population are clinically insignificant and require no further imaging.
Take a breath, be kind to your self and dont jump to any conclusions just yet cause its only going to keep you spinning, breath!!!
Thanks for your input JJ. You're definitely right about not knowing if any of those are going to end up on my plate in the end.
However, I do know that the radiology report specifically pointed out the mesenteric lymph nodes and said that it was more than likely related to an "inflammatory or malignant process." And earlier today, I found in the book a lot of radiologists use, Ioachim’s Lymph Node Pathology Book, that these nodes are the 2nd most popular for SLE Lupus to invade. So, it could definitely very likely be Lupus. You'd be winning big money on me !! :-)
The brain lesions that I have are very few. The radiologists always put in my MRI reports that just a few scattered hyperintensities - basically nothing more than typically seen in the population. And my current neuro that I had moved over to last July had told me that she doesn't know if she would have diagnosed me with MS, but said she wouldn't take away my diagnosis since the Univ Dx'd me based on what they saw on my MRI & symptoms.
Plus, I'm not a normal healthy population with the lymph nodes. The whole reason why my primary care doctor did the ct scan is because I haven't been well in a long time.
I really wish I could take a deep breath. That's good advice. I need to learn how to relax and have less STRESS. That's probably one of my short-comings. I also get nervous / anxious fairly easily. Which I know isn't good for me. It's just something I can't seem to help/control, especially with all that's been going on for so long.
Sometimes it only takes one person to listen! I hope you have found that one person and they can take a fresh look! Anything to get you feeling better. Can be so complicated sometimes. Wish it weren't that way. Many hugs your way! I am anxious to hear the results and a plan for you.
Wow, Kelly - I'm glad your new doc is going over this thoroughly. You really haven't been well over the last year. Sending good thoughts for a clear diagnosis, and the right treatment. It all sounds rather scary, and you sound amazingly calm in your writing (of course I could be totally misinterpreting, here).
Thanks for the hugs and the nice words Lisa. I am definitely in need of a clear and correct diagnosis right now. The doctor seems a bit older/mature and maybe his experience can help him figure it all out.
Oh Kelly, my reaction is so, so mixed. I know these aren't the kind of things you wanted to hear even if you did have personal suspicions. I also know you’ve shown the will and determination to never be satisfied with less than the truth. Your struggle may have seemed subtle but it has also been solidly persistent. This pit stop with a rheumatologist sounded like a terrific idea and I so hope it leads you to the answers you need.
I am so impressed by the quoted words you shared that came from this obviously caring and straight forward physician. He must also be quite a compassionate human being. That’s not a combination we see often enough. I'm so grateful you finally found Doc Rheumy and managed to glide straight into the inner offices of his practice.
Your trepidation is apparent (and totally understood) but I also sense a peace about you - at least a lack of the frustration that has so often followed most of your doctor visits of the past. That is huge. Being able to trust your health care provider / investigator? It is absolutely.... HUGE.
Please know that you are held tenderly in the hearts of so many of us in this community. I’m sure you will fill us in as you gain more info and process all this yourself. Until then, and after, I wish all good things for you.
Hi I"m glad you are getting a thorough work up to get the right diagnosis, (and the right treatment!) so you can feel better.
I am a non-ms diagnosis myself. After three years of symptoms, countless doctors, finally ended up in the MS clinic, and was getting symptom treatment but not much else (never so far as diagnosed with MS, but a possible MS) when I kept feeling worse and worse.
Eventually had a crisis, collapsed at work and was diagnosed with Multiple Myeloma after a trip to the ER and a referral to the Internal Medicine team at my hospital for hard to diagnose, or complicated cases. When the internal med. team examined me and asked probing questions they uncovered many Cancer symptoms I had been experiencing, but didn't realize they were symptoms
Lupus was a possible differential diagnosis in my case since I had a elevated Sed Rate, CRP, and I had blood irregularities including high protein, and rashes (livedo, raynauds), and since my age (32) Myeloma was a very rare possibility. But once the the blood work came back with a strong evidence for Multiple Myeloma (called an "M-spike" on the test called an SPEP) bone marrow biopsy confirmed it
I'm doing well though, have been in remission since shortly after my stem cell transplant nearly 2 years ago.
You've always been very encouraging to me from the beginning Mary. I really appreciate your thoughts/words that you have given to me. Yes, this is stressful, but as you mentioned, it is also FINALLY a relief that someone is listening to what I say. It almost feels like I'm going to be taken care of - whatever it is. The doctor and the NP both seem to be very caring individuals.
Ah, summerluvr - I do remember you commenting several times on other posts about your multiple myeloma. Who knew that that would be one of the things they'd be looking at for me. If you don't mind, I was wondering what some of the cancer symptoms were that you didn't realize were symptoms? Not that I think I have cancer; it's just so that I know.
Thank you Ren. Yes, finally I don't feel like I'm talking to a wall. (That's only acceptable on FB, right?) :-) Lupus would definitely beat out cancer, if I had the choice to pick one or the other. I feel very encouraged right now with my doctor and that he will figure it all out and we can start treating whatever it is.
Wow, Kelly! Not sure what to say, except I wish you well. I hope your new doctor is wrong, and you don't have any of those diseases, but I am so very relieved that you are being properly cared for, at last!
Ha, thanks Tammy. Kind of strange to say we hope the doctor is wrong, but I kind of do, too. Although, that still leaves me wondering why I don't fit into RRMS when I have that Dx & other unrelated symptoms. Hopefully, I'll see in just a few days...
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.
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...
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.
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....
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.
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....
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!
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!
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.
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.
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.
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
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