immune related tests i should order for bilateral paresthesias...gloves?

[TrixieStix]

@waif
Crazy! I actually have 2 cervical ribs. lol (bilateral) which is less common in terms of cervical ribs. Some TOS folks will be thought to have a cervical rib but it ends up actually being an elongated transverse processes (like you mentioned) which can also cause problems like a cervical rib. A fancy 3D ct scan (Mass General developed this test and it was/is only place you could get it) that was done of my brachial plexus showed mine to be bonafide cervical ribs (there is a joint).

I only have Neurogenic TOS. My subclavian was significantly compressed, but that still was not considered to be vascular TOS. Thankfully it was not damaged so the decompression surgery fixed that. My surgery consisted of removal of the right cervical rib, removal of the entire 1st rib (sternum to spine), removal of 2 of my scalene muscles, and scar tissue removal. I still have compression on my left side and we planned on doing surgery on that side at some point, but given I've developed so many health problems since it's no longer being considered. Thankfully my left side isn't as bad as my right side (my dominant hand).

 

[TrixieStix]

my brachial plexus feels "scarred"..like there's a tourniquet sometimes on the side of my neck and i get the urge to yank my shoulder and my head in opposite directions, but i know that'll actually make it worse. propping a pillow under my right armpit helps. my body is really lopsided

TOS made my right side feel like my shoulder was out of joint or something. It created a sensation like I wanted to push my arm up into my shoulder socket and hold it there. Also my shoulder blade felt like it was way too tight against my body and when a massage therapist would pull on it, it felt soooo good. One of the worst symptoms was a deep constant aching pain in my upper arm bone. I just wanted to dig my fingers in to my arm and rub the bone. Thankfully surgery resolved that sensation and pain. But your description of wanting to turn your head away from your shoulder and stretch the shoulder away from it is something I still experience actually.

I had onset of serious TOS symptoms 18 years ago and for 13 years doctors said they couldn't find anything wrong with me. Then 5 years ago I started to lose function in my right hand. I was diagnosed shortly after that when I stumbled upon something online about TOS and realized is sounded EXACTLY like what I was dealing with. I mentioned it to the doctor and I was diagnosed by the end of the appointment as x rays faintly showed the cervical ribs ( x ray report said it was totally normal but the doctor looked really closely and there they were).

 

[waif]

omg i just typed up like a page long reply and lost it, i'm so tired

i'll retype it when i can get voice recogition

@TrixieStix i totally thought of you at my appointment. they gave me all my labwork. i had my cbc test along with my low complements on 10-4.. and when i compared the two cbcs, they don't make sense. i wonder if drawing too much blood would affect someone's cbc? either way, it's a good sign. i've never tested low in cbc so i think they screwed up the labs.

the 9-25 labs they were basically drawing blood from a bruise, so i guess that's why my platelets were so low. 10-4 they didn't have any problems drawing blood but they clearly messed up somewhere else, idk.

 

[waif]

That's shocking that they couldn't really see the cervical rib on an X-ray...but you would think on an MRI when they do a bird's eye view and go down they would have spotted something. I wonder if cervical ribs are under diagnosed. What other vein compression would qualify as vtos? That's dumb. Years ago I did a vascular test and on my left side when I'm an extreme military position with my head turned away my pulse reduced but they told me that was normal. Yeah I've had numb hands since 2010 and I remember Googling things about how tos wasn't real. I think they've gotten a lot better with the surgery for removing first ribs (?) because I've heard horror stories about that. Also some people go on to develop complex regional pain syndrome.

I get that deep ache and the upper right arm. Also the dangling sensation is always there but I'm hypermobile so I don't know if I should blame it on my range of motion which is much greater than a healthy person or if it has to do with my rib. Before my hands went numb, like a year before and I experienced the zingers and zappers there were a couple of days when I couldn't lift my arm over my head and I remember flinging it up against the wall to get it to stay up. It was really stupid of me. I should have gone to a doctor then but I didn't have health insurance so.

See if I don't have my workstation or my laptop set up and just the right way I can trigger a horrible flare up. Do you have that problem? Years ago I couldn't even sit at a laptop

I had to wait 2 hours to see my hematologist today without any explanation sooo im tired. and he referred me to a rheumatologist, said I might have some form of lupus. I asked to see an immunologist but he looked at me like I was crazy so.

Just my opinion but the irony is I think TOS is very real and actually more real than carpal tunnel syndrome, which is way over diagnosed

 

[waif]

My ferritin was 17 before they drew buckets of blood so now it's prob a 2

 

[TrixieStix]

@waif yes it's a known fact that radiologists often overlook cervical ribs. It's thought that between 0.5% and 2% of people people have 1 (or less commonly 2). here is a link to a study about this issue in CT scans...

http://www.ajnr.org/content/ajnr/early/2012/07/12/ajnr.A3143.full.pdf

 

[TrixieStix]

@waif yeah that super low platelet count on 9/25 seems fishy. Seems likely to be a lab error. Mention this to the rheumatologist and have them retest your C3 and C4 levels for sure. I assume the rheumy would want to do this anyways. Every doctor I've seen about my low complement has wanted to re-test it at their lab to make sure it is actually that low.

"Pseudothrombocytopenia is defined as a falsely low platelet count, with an estimated frequency of between 1 in 1,000 and 1 in 10,000 blood specimens collected in ethylenediaminetetra-acetic acid (EDTA)-containing tubes. Most of the time this is due to an in vitro platelet clumping process that leads to a falsely decreased platelet count."

https://en.wikipedia.org/wiki/Pseudothrombocytopenia

 

[TrixieStix]

@waif

Positions of anything I do with my arm affect my TOS symptoms. I had to give up working and driving 4 years ago because of it, and I am extremely limited in being able to do anything that requires my arms to be up and out in front of me, no overhead stuff either. For computer use I have a blue tooth keyboard and mouse that I lay on my lap and use while I am reclined back in a recliner chair. That way I can use them with my arms essentially down at my side. Even that still causes pain, but I think it's mostly the small fiber neuropathy causing my hand pain. TOS is what my SSDI is based on. TOS has robbed a lot from me and I can't do most of the activities I enjoyed doing (playing musical instruments, drawing, sports, driving, gardening, etc).

Yes I think TOS surgery is better today than in the past. Still with that said there are only a couple surgeons in the world that I would consider letting touch me. There continue to be awful stories in the TOS forums of people having their surgery done by someone who is not qualified enough to be doing the surgery and they end up causing major issues in the person. Also there are many stories of people having TOS surgery where the surgeon does NOT remove the 1st rib and their symptoms quickly return, and then they have to have re-do surgery (aka: surgery done the way it should have been done in 1st place). TOS surgery can be super intense and the recovery can be intense. It was for me. The nurses on the thoracic in-patient floor at Mass General told me that TOS surgery is one of the most painful surgeries they see. I can attest to that!

 

[waif]

yes, my hobbies before were drawing and geeky computer things. i can't do any of them AT ALL. drawing for some reason flares me up the worst.

would you mind describing to me further your ergonomic set up? like where is the monitor? i need a recliner BADLY. i read things on my laptop lying down in bed most of the time but i obviously can't type that way. i have to use VR all the time on my smart phone. and at work, i barely work part time. it's a joke.

i couldn't go through a tos surgery..maybe when i was 21 or something but i didn't have tos then. also, i have an extremely thin neck, i'm a bobble head basically, so cutting scalenes or any muscles is a big no no. i think i read ideally they go through your armpit area...

here's my neck just if you're curious. i know a radiologist and she had someone look at my mri for an elongated c7/first rib and they said they didn't see anything. my left "tos" side thuds around all day long, and my right side feels stretched out and droopy.

I KEEP FORGETTING TO ASK. is your median nerve or your ulnar or radial more irritated. my median nerve is the one causing me the most pain. my ulnar doesn't burn or anything like that and those fingers aren't as numb, but right down the middle of my arms, it burns. during flares my index finger gets the numbest.

 

[waif]

i can't click on a mouse, that's how bad my median nerve is..i have to hold a marker
touch pads are great

another thought, they need to have limits on how much blood they can draw in one session. i'm positive the phlebotomist took too much blood...on oct 4th, not the 25th

 

[TrixieStix]

@waif sorry i have not yet responded. the past few days have been unusually busy for me (got a new dog). I will try to get back to you tomorrow

 

[waif]

no rush! congratz on the dog. animals keep me sane.

i have my "dead" right arm today.so i shouldnt type much

 

[TrixieStix]

@waif my ergonomic set-up consists of a recliner chair, a 32" flat screen tv directly in front of my recliner (roughly 8 feet away from my face when I am reclined in the chair) that I use as my computer screen, a blue tooth keyboard and a blue tooth touch mouse pad.
So basically I am reclined back in my chair looking at the tv screen with the keyboard over my pubic area and the mouse pad on my belly. I recline at different degrees based on how my neck feels that day. Does that make sense?

It's def my ulnar nerve that is the most irritated in my arm. And as is most often the case in TOS my pinky and ring finger are the fingers most affected by TOS (get numb and tingly). I dread blood draws. The tourniquet hurts like hell squeezing on my ulnar nerve and I have to tell the phlebotomist that they can't poke me anywhere near my ulnar nerve.

 

[waif]

thanks @TrixieStix!

that makes perfect sense. i'd love that setup except i'd need a tray or something for the mouse/keyboard. on my stomach i think my shoulder would collapse (it can't hold itself in place very well, too droopy, which irritates my pec minor etc). i reaaaaaaaally need a recliner but i'm so picky and it seems like the best deals are online, and you def can't sit in a recliner easily just have it shipped back if it doesn't work out. but it's something i need to deal with eventually

i took a little break from my health research but my rheum appointment is wednesday, i'll definitely let you know how it goes

 

[waif]

also @TrixieStix that's what i observed too, on neurotalk, everyone seems to complain about their ulnar nerve much more than their median. i need to look up a very detailed brachial plexus picture..like maybe ulnar is affected by scalenes/first rib more and median something else, idk

 

[TrixieStix]

thanks @TrixieStix!

that makes perfect sense. i'd love that setup except i'd need a tray or something for the mouse/keyboard. on my stomach i think my shoulder would collapse (it can't hold itself in place very well, too droopy, which irritates my pec minor etc). i reaaaaaaaally need a recliner but i'm so picky and it seems like the best deals are online, and you def can't sit in a recliner easily just have it shipped back if it doesn't work out. but it's something i need to deal with eventually

i took a little break from my health research but my rheum appointment is wednesday, i'll definitely let you know how it goes

Please do. I hope your appointment goes well.

I actually had a rheumatologist appt this past Friday. This was my 1st time seeing Dr.Y. I informed Dr. Y about me and my primary doctor's concern that I may have Relapsing Polychondritis and about all my various symptoms and medical adventures over the past 5 years. Thankfully I've been good about taking photos of my face, nose, ears, and eyes whenever something acts up. I had 75 of the photos printed out (going back as far as May of this year) and I put them into an album, dated them and put them in chronological order so Dr.Y could easily look thru them. Unfortunately there is no biomarker for RP so photos of past "flares" can help a lot in the diagnosis process.

Dr.Y ordered more blood tests (some of them to rule out possible causes of my Small Fiber Neuropathy), and instructed me to undergo pulmonary function testsing here at the hospital where I live. Dr. Y also arranged for me to be seen by another rheumatologist (Dr.B) at the same clinic. Dr.B specializes in Relapsing Polychondritis and is considered one of the top RP doctors in the US. I had originally tried to get an appt with Dr.B, but was told it would be a 5 month wait for an appt. Thankfully being that I am being referred to her by her colleague the wait for an appt should be shorter. They are supposed to call me to schedule the appt. Dr.B only sees patients 1 day a week as she is engaged in research the rest of the week thus the long wait times to see her.

Dr.Y also told me she wanted to do a CT scan on my throat/trachea (RP often attacks the trachea and I am having symptoms there), but after I told her I try my best to avoid CT scans unless absolutely necessary and that I wanted her to be very sure that she orders the correct CT scan so I don't have to re-do it later she came back around and told me she wanted to hold off on the CT scan. That was fine by me because I'd really rather wait and have Dr. B, the RP specialist order any CT scans that are deemed necessary because then I will know for sure what's being ordered is correct, and I won't risk having to have it re-done because it was ordered wrong. I've had 3 CT scans done in the past 4 years and with each additional scan your risk of cancer increases.

So now this week I go to yet another doctor (Dr. K) on Thursday. Dr. K specializes in immunodeficiency & rheumatology and the appointment with him was arrange by the immunologist I saw in August. Dr. K is not an easy man to get an appointment with so I am grateful as he is one of only 2 doctors in my state who knows a lot about complement deficiencies (i'm sure I wrote about this before). Dr. K only sees patients a total of 4 hours a week as he is a professor at the medical school and runs one of the departments I believe. His limited availability is why I sought out a different rheumy to asses me for possible Relapsing Polychondritis. I want to focus the appointment on what it was meant to address...my low complement and then if necessary I guess we can tie the possible RP into things as well. Lots of smart rheumy eyes about to be on me which seems like a good thing and an overdo thing.

 

[waif]

wow! i'm excited for you. surely between one of those specialists they'll figure something out and at least you don't have to wait 5 months.

my rheum appointment was kind of disappointing. she only retested complements and cbc...and she said some people just have low c3/c4 which is NOT a sufficient answer for me considering i've barely had any bloodwork. i'm bracing myself for the results. if they're abnormal i need to see someone..not even a rheum, idk. she was telling me about eds, which i already know all about, and nothing about my complements/neuropathy. i could get her to do a lip biopsy i guess but i need to switch doctors tbh

 

[TrixieStix]

wow! i'm excited for you. surely between one of those specialists they'll figure something out and at least you don't have to wait 5 months.

my rheum appointment was kind of disappointing. she only retested complements and cbc...and she said some people just have low c3/c4 which is NOT a sufficient answer for me considering i've barely had any bloodwork. i'm bracing myself for the results. if they're abnormal i need to see someone..not even a rheum, idk. she was telling me about eds, which i already know all about, and nothing about my complements/neuropathy. i could get her to do a lip biopsy i guess but i need to switch doctors tbh

I will write more at a later time. Gotta get my butt to bed since I have my doc appt tomorrow and it involves a while day of travel to/fro. In terms of possible Small Fiber Neuropathy, you might have better luck asking a neurologist about it/to test you. That's how I went about getting myself tested.

 

[TrixieStix]

@waif So unfortunately the wait to see the RP specialist is still going to be quite long...4 months. Appointment is at the very end of February. Oh well at least it's not 5 months

I saw the other rheumy about my complement deficiency yesterday. He was nice. Unfortunately he doesn't seem to think there is much value in doing further testing to figure out exactly why my C3 is low (he does seem to agree it's a genetic deficiency not an acquired one) as he doesn't think this information would change treatment decisions. I agree with him on that point, but I still believe there is value in knowing the exact nature of my C3 deficiency as some genetic deficiencies are quite rare and cases like mine could aid in complement research as work is being done to figure out how to treat genetic complement deficiencies. I plan on discussing this with him further next time I see him.

The doctor wants to see me again after I've seen the RP specialist. I've made an appt with him 2 days after I see the RP specialist. He said that if I am NOT diagnosed with RP then he suggests I try taking Plaquenil to see if it improves my symptoms. He also thinks I should have a ANA with reflex testing done as it has never been done on me. I've had multiple ANA tests but never "with reflex" which is more in-depth and also tests dsDNA, RNP, SS-A; SS-B, and Smith (Sm). I have had SS-A and SS-B tests though and they were negative. Each time my ANA has been tested I've been told it's negative, but the doctor yesterday said that one of them was actually "borderline positive". Instead of making me go thru a blood draw yesterday (they are difficult/painful for me because of the TOS) he said I could have it done the next time one of my other doctors orders blood work, but I'm not sure when that will be seeing as I don't see the RP specialist for 4 months. Perhaps I can get it done when I see the ENT which should be a lot sooner than 4 months away.

Today I ended up messaging the rheumy I saw last week (Dr. Y) because last night my nose pain was the worst it's been since my initial flare/onset last month. It has hurt constantly this whole time since but it's mostly been tolerable. Earlier this week it increased though and so I took 800mg of ibuprofen (it's used for very mild RP symptoms) and it helped, but last night the pain was much worse than that and ibuprofen didn't help at all. So the doctor called and said she has prescribed me 6 days of prednisone to see if it helps my symptoms. She also wants me to be seen by an ENT. I've only taken steroids one time for a persistent sore throat but that was only 1 single pill. I really hope the steroids help. Perhaps if it helps it will be aid in the RP diagnosis process?

Recap....
* 6-day round of steroids starting tomorrow prescribed by Dr. Y
* Schedule an appoitment with the ENT
* Pulmonary Function testing at the end of this month
* Appt with RP specialist Dr.B at end of February
* 2nd appt with Dr. K at beginning of March

How you doing?

 

[waif]

i'm frekaing out

i can't even think

ssa ssb negative

c3 93 90-180
c4 17 16-47
dna (ds) antibody 2 <4 negative