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Shannoncr

first rheumatologist appt

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So I saw a rheumatologist for the first time on friday. she said my exam with her was “unremarkable” & she can see why I am often dismissed. I didn’t explain ALL of my symptoms, but I gave her a detailed history of all things I’ve been medically diagnosed (with test results to prove) with. she was like “wow that’s a lot” & I guess it is but they’re all diagnosed separately & I just find it hard to believe I have all these weird medical issues but nothing is connected. She order x rays of my hands, my sacroiliac joints & a bone density scan. Before I went to her appointment, I made a list of all things (that I could remember) I had been diagnosed with. 

endometriosis 

possible pcos 

MRI revealed part of brain consistent with small vessel disease (in 2009, I was 25. I don’t remember anyone talking with me about this but the MRI was done in the hospital. when I did see a neurologist, he said I had lesions on my brain & that I was having seizures. I wasn’t having seizures. )

syringomyelia from c5 to thoracic region (likely idiopathic or posttraumatic) 

Low ferritin levels -IV iron infusions were required because supplements didn’t work - some sort of malabsorption thing (likely will be again as my ferritin is 12)

all my cardiac issues with a structurally sound heart (aside from mild mitral valve prolapse & mild tricuspid regurgitation)

osteopenia of the spine

ANA positive 

Raynaud’s 

Red ear syndrome 

hypothyroid 

she also ordered 15 different blood tests. she said if these come back with no results, we will just have to dig further. part of me is really afraid that there is nothing wrong with me. I feel guilty for hoping these results come back with something. but then there is another part of me that hopes they don’t find anything because I don’t want to be sick. my psych team does not think it’s psychological though. whatever is going on, it feels like I am getting worse. my sat o2 level was only 94% - i don’t think I’ve ever seen it that low for me before. 

do a lot of you have autoimmune disorders? or connective tissue disorders? or is it dysautonomia without an underlying cause? 

as cliche as it sounds, I am just so sick & tired of being sick & tired.

sorry for being complain-y 

shannon 

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I remember those days. When my Rheumatologist gave me an actual medical diagnosis I was so relieved - not because I wanted to be sick, but because I WAS sick, and now I knew what to fight. What you are feeling is normal. My first diagnosis was Undifferentiated Connective Tissue Disease. Then Lupus. Then Rheumatoid Arthritis. Now they call it Mixed Connective Tissue Disease. 

Hang in there. It sounds like help is on the horizon.

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@KiminOrlando thank Kim. were you able to find the right treatment? i feel nervous they’re not going to find anything or give me a diagnosis because i have some symptoms of certain autoimmune/connective tissue disorders but not all of them. 

i went to the initial consult by myself but I’m wondering if I should bring my mom with me when I go back in 3 weeks after the results come in. 

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Yes, bring someone. Have them take notes. Take a list of questions and have them track that all questions are answered and what the answers are. Whatever happens will be emotional for you and you will be processing it emotionally. The other person needs to process the information rationally. Can your mom do that or is she too emotionally involved?

Once I got my first diagnosis it continued and still continues to evolve. Only my ANA was positive. I had hypothyroidism (Hashimoto's) and Reynaud's. This got me the Undifferentiated Connective Tissue Disease (UCTD) diagnosis. Some Rheumatologist won't treat that. They wait for something specific to show in bloodwork. Some will treat it. There is something called sero-negative (insert different autoimmune diseases here). That just means maybe you have lupus or RA or something else, but the antibodies don't show in your bloodwork. It can be 20% of people with these types of autoimmune diseases that never test positive but have all of the symptoms and still need treatment. My first Rheumatologists didn't believe that sero-negative autoimmune diseases existed, so he didn't treat them. If nothing but a positive ANA shows in your bloodwork, you should ask what sero-negative lupus and RA means and try to see if you can find out if she believes it and treats it. A positive ANA means something. Once it is positve, it will tell you a ratio. The bigger the ratio, the stronger the reaction. Then the ANA will have a pattern. Different patterns mean different things. Also, find out your SED rate. I think it is also called ESR. Also find out your CRP. These are markers for inflammation and mean something isn't right. 

I'm convinced without any scientific proof that some types of dysautonomia are from some type of autoimmune disease, but only the ANA is positive. We just haven't figured out how to properly test for the antibodies to nail it down.

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here’s what she’s testing for:

14-3-3 ETA protein

cyclic citrullinated (ccp) IgG

rheumatoid factor

c-reactive protein, quantitative

ESR, westergren 

urinalysis, complete

DNA Ab crithidia,ifa with reflex to titer 

c3 & c4 serum

sm & sm/rnp abs

centromere B ab

sclerodoma, abs

sjorgrens abs

anti nuclear Ab titer & pattern

hla-b27 antigen

vitamin d,25-hydroxy,total, immunoassay

its all Greek to me. 

my mom is not emotionally involved at all, lol. i mean she’s sad I don’t feel well but she doesn’t think it’s anything serious. once my cardiac issues came back there’s nothing structurally wrong with my heart, she wasn’t super concerned anymore. she is a nurse, so she’s always been tough like that. which is really the reason I had thought to ask her to come. 

I know I haven’t been diagnosed with anything & there’s a chance I may not have a diagnosis, but is there any specific questions you can think of that I should be asking?

& this is personal & you don’t have to answer if you don’t want to, but how many doctors do you have to see for your conditions?

i appreciate this so much. I’ve been doing this all on my own without much guidance & it’s nice to get input/feedback from others who’ve been here before. 

Shannon 

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Good News! She is running all the right tests and is taking you seriously. Get a copy of your bloodwork results. Your mom being a nurse will help. What kind of nurse? 

I went through countless doctors before I found help. I have 6 different specialties I see, plus other stuff that pops up from time to time. My 'good' doctors are out of state, so I have 2 more duplicate specialists locally that are in the loop in case I end up in the hospital. My primary said he can't handle me on his own locally and needed local specialists to back him up. I'm about to add an additional specialist at the request of one of my out of state doctors. My cardiac work up came back clean too.

If your bloodwork comes back with a positive ANA, elevaled ESR, elevated C Reactive Protein but nothing else, ask if this could be sero-negative lupus. That will give you a feel for how your doctor thinks and open up the sero-negative conversation. You can even ask about your ANA pattern if no other bloodwork is positive. Often they use that as a clue to what it might be. Different ANA patterns suggest different diseases even when the antibody tests are negative. 

You listed what your quantifiable symptoms are. What are your other symptoms? Do you have joint pain? She is going to make a clinical diagnosis off of that. If you aren't having rheumatological symptoms, she may choose to delay treatment until symptoms become more severe. Treatment for autoimmune diseases are no joke and can lead to a slew of other side effects. I'm on a low dose of weekly chemo, but I know I need it and would be worse off without it. 

Autoimmune diseases are a delicate balancing act. If your ANA is only weakly positive with no pattern, barely elevated ESR and C Reactive Protein and no other positives, she likely will take a wait and see approach. I would certainly ask her what the next step is reguardless. 

If she does diagnose you with an autoimmune disease and you want to chat, send me a DM.

It took me years to get someone to take me seriously. Oh, and my mom always thought I was just lazy. I wish she had been right.

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my mom is an LPN but she’s smart enough to be a doctor. for years, she worked on the labor & delivery unit at children’s hospital of buffalo. she then went on to work for OBGYN private practice but she wore many hats there. 

I think I am having joint pain. I can’t tell if it’s my joints or my tendons. my hips keep locking and I have to pop them in order to be able to move comfortably. my ankles are sore but it’s not the ankle bone, it’s where the top of the foot meets the ankle. sometimes it feels like they’re getting stuck & they give out on me often (they always have given out on me, as a kid in gym class it was so embarrassing)  my shoulders are sore. My elbows hurt but it’s the inside of my elbow. my fingers & wrists are really sore. my index fingers, at the top knuckle, are twisted slightly towards my middle finger. my thumbs, I notice it more on my left hand because I am left handed, hurt but only when I am writing or using them where they have to be pointed inward towards my palms. my left thumb knuckle is about twice the size of my right. my left knee is swollen on the left side of the knee cap & I have a bakers cyst behind the knee. my neck is sore & tender to the touch. my jaw often locks & cracks (that’s pretty painful) I am exhausted all the time. I get winded easily. my muscles in my arms & legs feel like I’ve been doing push-ups & squats all day. Driving is hard because of this. my arms are so heavy on the steering wheel lol. I get headaches almost daily. I am so winded all the time. I do have really bad pain in my sternum (sometimes it cracks when I stretch) & it hurts pretty bad when I breathe deep. I’ve had this before & it has always come & gone. This has lasted about a month now. I have noticed a drastic decline in my ability to do things I could do with ease just last year. & then I have a lot of the typical POTS symptoms (which I haven’t been diagnosed with either, still waiting on my primary care to review my neurology medical records to have a consult with Dr. Blitshteyn) tachycardia, fainting, brain fog, balance issues, etc. I have weird stomach issues, comstipation, bloating, often feels acid-y & full all the time. Lately, I’ve been just feeling like that feeling you get before you get the flu.  My oral temp is usually normal 97.8-99.5 but my body temp is usually like 103-104. I get super bad night sweats, like change your sheets the next morning night sweats .

when she did my exam, I moved all my joints perfectly without any pain that’s why I’m not sure if it’s joint pains or muscle/tendon pain. I do have a really high pain tolerance so for me, the pain is more of a nuisance but it’s scaring me because of how quickly it came on. I’ve had some of these aches & pains before but I can’t ever remember a time having them all at once. the heart stuff &headaches I’ve had for as long as I can remember. 

i don’t have any rashes. I did have this crazy rash two years ago that started on my left shin, the skin all peeled off like a sunburn & then it moved to my right leg then my right arm. I was just told to keep it out of the sun & put vitamin e on it. I had it for a year. I am & always have been sensitive to the sun ( I get sun poisoning several times in the summer every summer) but I don’t think I have any of the clinical symptoms of lupus. she also didn’t think I had lupus but said she wanted to test just in case.  she also said exactly what you did, she wasn’t going to offer treatment until all the results came back. she did say if these results come back with nothing, she will dig deeper. she was the medical director of rheumatology department at a teaching hospital here in buffalo. She’s young, only like 40something. 

but that’s about it, I think. 

do all of your doctors work together? 

i will probably take you up on the offer to DM you if I get a diagnosis, thank you so much. 

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3 hours ago, Shannoncr said:

my mom is an LPN but she’s smart enough to be a doctor. for years, she worked on the labor & delivery unit at children’s hospital of buffalo. she then went on to work for OBGYN private practice but she wore many hats there. 

I think I am having joint pain. I can’t tell if it’s my joints or my tendons. my hips keep locking and I have to pop them in order to be able to move comfortably. my ankles are sore but it’s not the ankle bone, it’s where the top of the foot meets the ankle. sometimes it feels like they’re getting stuck & they give out on me often (they always have given out on me, as a kid in gym class it was so embarrassing)  my shoulders are sore. My elbows hurt but it’s the inside of my elbow. my fingers & wrists are really sore. my index fingers, at the top knuckle, are twisted slightly towards my middle finger. my thumbs, I notice it more on my left hand because I am left handed, hurt but only when I am writing or using them where they have to be pointed inward towards my palms. my left thumb knuckle is about twice the size of my right. my left knee is swollen on the left side of the knee cap & I have a bakers cyst behind the knee. my neck is sore & tender to the touch. my jaw often locks & cracks (that’s pretty painful) I am exhausted all the time. I get winded easily. my muscles in my arms & legs feel like I’ve been doing push-ups & squats all day. Driving is hard because of this. my arms are so heavy on the steering wheel lol. I get headaches almost daily. I am so winded all the time. I do have really bad pain in my sternum (sometimes it cracks when I stretch) & it hurts pretty bad when I breathe deep. I’ve had this before & it has always come & gone. This has lasted about a month now. I have noticed a drastic decline in my ability to do things I could do with ease just last year. & then I have a lot of the typical POTS symptoms (which I haven’t been diagnosed with either, still waiting on my primary care to review my neurology medical records to have a consult with Dr. Blitshteyn) tachycardia, fainting, brain fog, balance issues, etc. I have weird stomach issues, comstipation, bloating, often feels acid-y & full all the time. Lately, I’ve been just feeling like that feeling you get before you get the flu.  My oral temp is usually normal 97.8-99.5 but my body temp is usually like 103-104. I get super bad night sweats, like change your sheets the next morning night sweats .

when she did my exam, I moved all my joints perfectly without any pain that’s why I’m not sure if it’s joint pains or muscle/tendon pain. I do have a really high pain tolerance so for me, the pain is more of a nuisance but it’s scaring me because of how quickly it came on. I’ve had some of these aches & pains before but I can’t ever remember a time having them all at once. the heart stuff &headaches I’ve had for as long as I can remember. 

i don’t have any rashes. I did have this crazy rash two years ago that started on my left shin, the skin all peeled off like a sunburn & then it moved to my right leg then my right arm. I was just told to keep it out of the sun & put vitamin e on it. I had it for a year. I am & always have been sensitive to the sun ( I get sun poisoning several times in the summer every summer) but I don’t think I have any of the clinical symptoms of lupus. she also didn’t think I had lupus but said she wanted to test just in case.  she also said exactly what you did, she wasn’t going to offer treatment until all the results came back. she did say if these results come back with nothing, she will dig deeper. she was the medical director of rheumatology department at a teaching hospital here in buffalo. She’s young, only like 40something. 

but that’s about it, I think. 

do all of your doctors work together? 

i will probably take you up on the offer to DM you if I get a diagnosis, thank you so much. 

What is your sleep like?  I have chronic insomnia, non-restorative sleep, and hyper-arousal, where I wake up every 1-2 hours.  I basically wake up right during REM and therefore never get any actual sleep.  I have a rheumatologist appointment next week and am not really sure what to bring her --- except my laundry list of symptoms.  Some of them subsided but the big ones are gastroparesis, sleep disorder, pains in calves, minor fasciculations, heat intolerance and inability to perspire normally.  Hopefully you get the answers you need.  And eventually the treatment.  My PCP still thinks it's psychological and my neurologist gave up on me entirely.  Something is wrong in my system(s) and I just want answers and some relief if possible.  

Best,

Zer0

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@zerohours000 I sleep about 5-6 hours a night. I am an incredibly light sleeper so I am up several times throughout the night (I have two dogs who sleep in bed with me) but I never wake refreshed. There are some days that I want to take naps but as weird as it sounds, I can't because I always wake up feeling worse. I get bad headaches & nausea. 

I brought all the blood work I had had done recently, as well as old blood work that showed how low my ferritin was & what it was after IV iron infusions. I brought two old bone density scans, one normal results (2006) & one after I was diagnosed with osteopenia (2009). I brought the MRI results from a neurologist in California who originally diagnosed me with syringomyelia. I also brought my gene testing for pharmacology. She looked at it all but only kept the bone density scans & blood work. She was able to access some things on her own because of the system healthE link, which i always sign up with any time a doctor offers it. It's convenient because then they can access all your records. 

Im sorry your doctors aren't taking you seriously. I just happened to get lucky with my psych team - they believe me & are trying really hard to help me figure this out & see the right doctors. It was my psychiatrist who encouraged me to see a rheumatologist. It's really frustrating & has happened to me my whole life. Just keep trying to find the help you need. Do you have parents/siblings/friends who are there for you? 

I sincerely hope you find the right doctors soon & get some relief. 

Shannon

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@zerohours000 and @Shannoncr I too had trouble sleeping when my symptoms started for many years I would fall asleep fast but wake up after 3 hours wide awake right around the time most people sleep deepest because their adrenalin levels drop and they go into REM. The poor sleep made my hyperadrenergic symptoms so much worse - it was like an evil domino-effect. But after becoming disabled ( which enables me to pay close attention to my body and rest BEFORE I get too excited over overstimulated therefore bringing my norepinehrine levels down) and taking many meds spcific for hypradrenergic POTS I sleep really well most of the time. What helped me mostly was Lexapro and Ritalin ( in addition to other meds ) and if needed I take Ativan 0.5 mg before bedtime. I also take 1/2 of Flexeril at times for muscle spasms and that helps too but mostly I sleep without meds as long as i do not overdue any activities during the day. For me it seems that as long as I keep the adrenalin surges away I do not get them at night either. 

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@Pistol are some of your doctors weird about you taking ritalin? I’m on adderall xr 10mg & modafinil & the EP was like “these meds are causing your palpitations” but I’ve been on them for 8+ yrs & was diagnosed with tachycardia & PVCs before I went on any stimulants. but SSRIs don’t really work for me as my transporters or receptors only work intermittently. Lexapro caused me to have seizure like symptoms but the prescriber bumped me up to 40mg. I came off that & we tried the lowest dose of celexa to see if that would be better & the symptoms came back again. I’ve been off antidepressants for 10yrs. I had been on so many different kinds. 

I also have prescription for Xanax (.25 but I only take half) but I am soooo sensitive I rarely ever take it. I can’t even remember the last time I took it. I feel so hungover on it days after I’ve taken it. Do you get restless legs? 

 

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Hi. I'm sorry to that you have so many things wrong with you from your comprehensive list. Don't dismiss any of that. 

I have the connective tissue disease Ehlers-Danlos type 3 the hypermobility kind. I had some dislocations in earlier years and then other aspects of health came up, like endometriosis, heavy periods, problems with my spine etc. After Epstein Barr Virus (as Glandular Fever) I got crippling chronic fatigue and that's when the autonomic nervous system started playing up. Decades later I suddenly developed POTS and Small Fibre Neuropathy. I didn't get diagnosed with EDS until I was 53 and POTS when I was 55! I am sure that I have Mast Cell and Histamine issues because of the intolerances to meds, food and toiletries/cleaning products. All of these conditions are linked. I also have a twisted spine, tilted pelvis and degeneration at lumbar cervical spine. I have a pronounced (non-fatty) hump on my upper spine. I have numerous other issues that are too many to list here. 

You have some mitral valve prolapse which can be linked to EDS and your blood vessel abnormality, maybe there's a link there, too? Did your rheumatologist examine you thoroughly? Did they check all of your joints according to the Beighton Scale? 

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@TCP no she didn’t check me for EDS, but I know I definitely don’t have the hyper mobility kind. I’ve seen the test & pictures of what people with hyper mobility can do & I definitely can’t do any of that lol. I think she examined fairly thoroughly. I went in there not knowing if I even needed to see a rheumatologist because my symptoms are pretty vague & I’m not in unbearable pain. Her clinician spoke with me on the phone & said “if you’re having minor joint & muscle pain without any injury, you should probably come in because that’s your body’s way of saying something isn’t right. It doesn’t matter how bad the pain is, it’s there & we should take a look at that”. I’m thinking maybe once my results come back, she’ll have a better idea as to what to do next or what to look for next. 

Were your doctors able to figure out that everything you’re dealing with is all connected? It seems highly unlikely that one person would have all these random medical diagnoses but none are connected, right? unless we are just unlucky ones 😉

hope you’re doing well now!

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Yes, the weird things that can be done with EDS joints! I do know of some people that cannot do any of these things on the Beighton Scale but have still been diagnosed with EDS as they have other features, like stretchy veins (I do that is why the blood pools), also Small Fibre Neuropathy (I have that), Mitral Valve problems, Autonomic Dysfunction, IBS, Gastroparesis and POTS etc. As I said they are all linked. Hypermobile EDS doesn't show in blood tests as there's no genetic marker (none found so far). Many people get diagnosed with arthritis as the joints seize up with age and others dislocate all their lives. I haven't had a bad dislocation for years although my knees are wobbly. One friend never dislocated and she knows she has EDS now and her kids are hypermobile, have POTS symptoms, allergies (Mast Cell issues) and Autism (all are connected).  My family all have allergies/intolerances and IBS and spine problems. 

I tell my cardio the links and he's very open to looking into other links and conditions. He is a good doctor and I know many have closed minds and only concentrate on their own field of expertise and aren't interested/knowledgeable in any other area. The neurologists had very closed minds and would not help much. Yes, it is bad luck and now I have a pituitary tumour which is just great! 

I clean eat now, no dairy, gluten, sugar and processed food. Low carb. I follow Yasmina Ykelenstam's advice on diet which is low histamine and helps with gut issues (mast Cell). Light exercise and good relaxation help me. I hope you can find some answers, too. All the best and keep us posted. 

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11 hours ago, Shannoncr said:

@zerohours000 I sleep about 5-6 hours a night. I am an incredibly light sleeper so I am up several times throughout the night (I have two dogs who sleep in bed with me) but I never wake refreshed. There are some days that I want to take naps but as weird as it sounds, I can't because I always wake up feeling worse. I get bad headaches & nausea. 

I brought all the blood work I had had done recently, as well as old blood work that showed how low my ferritin was & what it was after IV iron infusions. I brought two old bone density scans, one normal results (2006) & one after I was diagnosed with osteopenia (2009). I brought the MRI results from a neurologist in California who originally diagnosed me with syringomyelia. I also brought my gene testing for pharmacology. She looked at it all but only kept the bone density scans & blood work. She was able to access some things on her own because of the system healthE link, which i always sign up with any time a doctor offers it. It's convenient because then they can access all your records. 

Im sorry your doctors aren't taking you seriously. I just happened to get lucky with my psych team - they believe me & are trying really hard to help me figure this out & see the right doctors. It was my psychiatrist who encouraged me to see a rheumatologist. It's really frustrating & has happened to me my whole life. Just keep trying to find the help you need. Do you have parents/siblings/friends who are there for you? 

I sincerely hope you find the right doctors soon & get some relief. 

Shannon

My mother is now my proxy --- just in case --- but it's mostly just me running around making appointments and whatnot.  

Zer0

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8 hours ago, Pistol said:

@zerohours000 and @Shannoncr I too had trouble sleeping when my symptoms started for many years I would fall asleep fast but wake up after 3 hours wide awake right around the time most people sleep deepest because their adrenalin levels drop and they go into REM. The poor sleep made my hyperadrenergic symptoms so much worse - it was like an evil domino-effect. But after becoming disabled ( which enables me to pay close attention to my body and rest BEFORE I get too excited over overstimulated therefore bringing my norepinehrine levels down) and taking many meds spcific for hypradrenergic POTS I sleep really well most of the time. What helped me mostly was Lexapro and Ritalin ( in addition to other meds ) and if needed I take Ativan 0.5 mg before bedtime. I also take 1/2 of Flexeril at times for muscle spasms and that helps too but mostly I sleep without meds as long as i do not overdue any activities during the day. For me it seems that as long as I keep the adrenalin surges away I do not get them at night either. 

See.  I don't fall asleep fast.  I have to stay up very late.  Then I sort of get up every hour or two.  Lately, I've been having those same surges you just talked about.  Oddly, I have no heart issues or BP issues.  It's just I get this rush of adrenaline in my body and it feels like I have to go run a marathon but all I want to do is scream into my pillow to get the energy out of me,  It's very annoying.  I remember long ago I had this issue but never like this.  Not getting any sleep is literally killing me.  

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Yes, the had the adrenalin rushed for years. It's worse when I'm anxious. I always wake up dizzy, sweaty and nauseated. 

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I just wanted to chime in. My underlying is still a mystery. I suspect an autoimmune because it runs rampant through my mom's side. RA, Lupus, Sjogren's, hashi's, and my grandmother had a bone marrow thing I can't remember for the life of me right now. It wasn't actually autoimmune but it was close. Unfortunately my ANA keeps coming up negative. I have had 3 ANA tests in the last 3 years. Always negative. It sounds like you found a good rheumatologist. Good doctors are so hard to find. Good luck!!

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7 hours ago, StayAtHomeMom said:

I just wanted to chime in. My underlying is still a mystery. I suspect an autoimmune because it runs rampant through my mom's side. RA, Lupus, Sjogren's, hashi's, and my grandmother had a bone marrow thing I can't remember for the life of me right now. It wasn't actually autoimmune but it was close. Unfortunately my ANA keeps coming up negative. I have had 3 ANA tests in the last 3 years. Always negative. It sounds like you found a good rheumatologist. Good doctors are so hard to find. Good luck!!

I've basically given up all hope.  I don't even want answers at this point.  I mean --- what is even the point?  I have to stress out about finding the right doctors/diagnoses only to find out it's all bad news anyways.  What a waste.  Quality of life right now is nothing.  I give up.  I quit.  

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9 hours ago, zerohours000 said:

I've basically given up all hope.  I don't even want answers at this point.  I mean --- what is even the point?  I have to stress out about finding the right doctors/diagnoses only to find out it's all bad news anyways.  What a waste.  Quality of life right now is nothing.  I give up.  I quit.  

I think everyone feels that way at one point. I know I did. I was recently informed I have OCD and that may be part of it (unofficially diagnosed) but I have to know. It is something that was brought to my attention that I don't know so I have to learn. Some people don't care. They just take their meds and feel well enough to live their life.  They don't have to know why. I think it is all what makes them feel better mentally. I think soothing the mind helps cope with any condition. 

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