If you can handle it just get the local if your worried. The doctors wouldn't start any treatment until the biopsy was sent to mayo clinic. Guess how long I waited for that appointment? I tell you long enough for pulmonary issues to manifest.

I don't see why a local wouldn't work if you are okay with it all. The surgery is fairly quick. I asked for a nerve block while I was numb so I didn't feel much discomfort at all for 12 hours.

I did mine with conscious sedation. Some call it MALT anesthesia. It is basically Versed which is an amnesiac. You are awake but disconnected from the pain. I've had many surgeries that way and now I ask for it every time. It is so much easier. But if you've tried that and still had problems, I would go with a local.

Good luck! It really is part of the diagnostic process.

I also had conscious sedation with my muscle biopsy. I felt '' tugging'' sensations but no pain.

bny806, so sorry to hear about your anesthesia episode, that is really scarry. have they tested you for Mysthenia Gravis. I had a blood test and one of my docs would not do any procedure without knowing for sure i did not have it. The things you describe could be related to it and it makes anesthesia very risky...

do you have a good set of doctors??
All the best to you on this journey
Shawna

Thank yall so much!!! I think im going to push my rheumy to do one - I have such awful weakness, I dont' understand how that hasn't been done yet..
seronegative myasthenia is high on the list, but I don't have a good neuro at all - he thinks it's just stress and anxiety - well of course i'm stressed and anxious!! I can't breathe well, swallow, all my proximal muscles are much.. I do have muscle wasting too- which really freaks me out.. They give me IVIG - i get it every 3 weeks and it works, but I still feel like i decline at times- they don't seem to care to try and figure out what exactly it is.. and they are all very close minded and don't think outside the box (my tests are negative for MG - well my modulating Ab was 20- and normal is 0-20, so "high end of normal') they simply say - the tests were negative so you don't have it.. they seemed shocked when I asked about seronegative! I also seem to fit with LEMS (lambert eaton).. the 40% of people that are seronegative (more likely not be associated with cancer).. how are they diagnosed- mydr didnt' even know!!! grrr.. so frustrated

My ANA Is always quite elevated, ck below normal, muscles and joints hurt pretty badly - plaquenil helps a lot. eyelids are affected like MG/Lems to though. ... I also worry about wierd metabolic/mitochondrial myopathies as well.. My abdominal/chest wall weakness is by far the scariest problem... I wish I could find a good dr- but can't risk loosing my IVIG as it works wonders for me.

Mny806, getting a second opinion to throw into the mix is not likely to upese the apple cart and the IVIG. I would go to one of the big centers. The eye thing is common in DM. Any other rashes or itching?? I had terrible trunk and diaphragm weakness with flares and now it is better. I too am on IVIG and MEdrol my steroid of choice. Makes me less crazy...

Hope it all comes together and you get more progress. Patience is really important too... but you are not making this up, i promise. I am a nurse and no one could make this up, it is too obscure...

Sending you prayers and positive thoughts for patience and healing, Shawna

Hi BNY. I had a Temporal muscle biopsy when my doctor was trying to diagnose my Myositis. He had it done as he thought at one point I had Temporal Arthritis. This was done by a cosmetic surgeon under local anaesthetic. I did not feel a thing during or after. It may not be the same but hope it helps and good luck to you. I never did have muscle biopsy for this diagnosis. I became too ill and was started on the Pred. He said being on the Pred would make the muscle biopsy inconclusive. Autumm

Thank yall so much- I really appreciate yalls reponse!

Shawna - I am already at a big center (UT southwestern).. I saw multiple neuros before ending up there.. many people thought CIDP/guillian barre... however the tests didn't really show it... It all followed birth of my son, a virus (coxsachie- wow, that was miserable to have as an adult!!!), and then an IUD perforation ending up in the hospital for 4 days getting blood transfusions - fun! So, the onset is hard to put our finger on what the "cause" or exacerbating factor was.
I feel like most of the dr's think unless i'm dragging a limb then they aren't interested.. however i sure would like to PREVENT dragging a limb - and keep working parenting etc.. I couldn't hold my kids, a fork, walk up stairs, and then I couldn't breathe - my PFT's were low and I got admitted and they started IVIG... Had every test in the book - but no muscle biopsy.

Hormones, heat, anesthesia all make it worse.. when IVIG wears off It's pretty awful..

I didn't realize eyelids could be affected in PM/DM?? In fact - I do have more rashes- the weirdest one was around my eyes - I got patchy itchy rash around both eyes before IVIG (?periorbital heliotrope rash?).. then patches of itchy - I assumed eczema on my legs and trunk... and then little blisters that burn and itch on the dorsal surface of my hands . I also have livedo reticularis rash - ESP in the heat!

I do have muscle atrophy - pretty much all over - from shoulders/buttocks - ugh.. and a little bit in hands - but really ALL over - EMG's are always negative.. so whatever I have doesn't fit in the pretty little box they are wanting to fit me in.. and no one seems to be able to think outside of any boxes- grr! I know several people at the infusion center that I get IVIG that have had their IVIG taken away by other dr's and since have declined., so I am terrifed of that happening.. as it's the only reason I'm standing up at this point! (2nd treatment - i could smile again, swallow, walk, pick up my kids etc- a true miracle)!!!

another question - do yall "feel" sick? I just feel so awful all the time.. my muscles hurt, are so tender, my heart rate is fast, i feel lightheaded.. i just feel awful - for over 2 years now.. what I would give to feel semi normal!!!

Bny, i really think a myositis center is where you need to go. Stanford has one, and Johns hopkins and Mayo i think. this is so rare that even a group of Neuro's may not have seen it.
All the things you describe sound like DM to me... I am so sorry you are suffering, and you must not let them take your IVIG away. Youhave made steady progress right?? then it is the right treatment for your issue, whatever it is named in the end. I go to STanford and i have a negative EMG and no Muscle biopsy, but my skin told the tale and my weakness with a flare. i am on my 9th month of ivig and every month i get better, and the swallowing issues are gone and i can live a slow life...

YOu are already on treatment, so a muscle biopsy seems like back tracking to me.. What about some skin biopsys?? i have had the itchy hand bumps, the cuticle issues, and the gottrons papules and the heliotrope rash and awful itching. Many skin biopsies, but all off steroids. Now on steroids my emg was neg and we never did a muscle biopsy... seems too late now. I was doing great for a time with a vegan diet, and then flew to Hawaii and had a huge flare. I use oxygen alot when i am doing badly and then now when doing well i am using it only for exercise, long drives and sleeping at night. Get a better nights sleep and can exercise more with it at night to help body recover...

Wishing you all the best, and some patience and peace.
Shawna

Hi BNY. Shawna is giving you good advice. She has travelled the road and is an RN. Hope you find a first rate Rheumatologist who will make a diagnosis. For two years before diagnosis I felt really dreadful and had no life at all. Eight months into treatment I am feeling great but it took real time for the Meds to do their job, about six months. Autumm

I gor got to add that its my understanding that a Neuro treats IBM and a Rheumatologist treats DM/PM. I have no medical training. That's the wy it works over here but we are all different.Autumm

@bny806 and @autumm
I have PM with overlapping DM and Lupus. It was a neuro who diagnosed my PM (verified by a second neuro). The rheumy I had seen many times was never able to reach a diagnosis. So it just depends on the individual doctor. Some of us see rheumys and others of us see neuros. The overlaps were found by a derma via skin biopsies.

Thank yall so much - yall are so helpful - I really appreciate it!!

I took a break from testing and appointments as much as I could for about a year - I was so tired of going through it all and just wanted to live my life.. but recently I have thought maybe I should explore a few more things - which is why I was thinking muscle biopsy.. I am already getting IVIG, but I wonder if there would be a better treatment - in combination with it or instead of it.. I am SOO hesitant to do immunosuppresants due to the risks - they talk about immuran or cellcept.. but I just dont know that I can take that risk without a diagnosis that I can be confident that it will likely help... I guess in the back of my mind I worry that I have something awful and incurable, and what if an immunosuppressant infection/complication did me in or something and I didn't benefit from it.
Mentally, I really want to know what the heck this is! I Have a little bit of PTSD from my first dr appointment with all of this when the dr told me he thought I had ALS (horrible bedside manner- then said "have a good weekend"!!!! AHH)... I have such a strong family hx of autoimmune stuff, plus my markers have been elevated and they all say it's autoimmune "something".. but I think mentally until I can confirm something else, I will just continue to have fears of something worse is going on.. ...
I did have a skin biopsy - an epidermal nerve biopsy technically - it found "singficantly decreased" skin nerves- consistent with non length dependent neuropathy.. which also is likely an autoimmune thing as well - how that specifically ties into the muscle weakness and other wierd symptoms - who knows!!

Do any of yall have intestinal involvement? I have had bad GI symptoms all along (malabsorption).. when my IVIG wears off those symptoms return - it kicks in and i'm good!?