Updates on ovaries and floppy nose

[Jmiller623]

For background, had ovarian cysts and enlarged ovary. Been having endometriosis type symptoms and pain as well. Saw Gyn last week. Started progestin only birth control - low dose norethindrone. I must say, it makes me feel a lot better. My sleep feels more restful and I feel like I have a little more energy. My back pain is actually a little better. Let’s hope my lady parts fo back to normal. I have a repeat ultrasound in August. Anyone else find birth control helpful?

I see facial plastic surgery next Monday for my floppy nose and will keep y’all up to date with what goes on there. I kind of noticed the whole left side of my body looks slightly “leaner” or underdeveloped compared to my right. It was more prominent in the beginning and seems to have abated or slowed. I know lupus profundus causes loss of fat after trauma and this feels almost like a variation of that. Anyone else have unilateral wasting of some sort that isn’t related to a stroke? Thanks!

[Spanielmadlady]

Hi J . I was diagnosed with endometriosis in my 20s and had 6 years of treatment ....2 mini menopause and then laser treatment. I had my eldest at 22 and my youngest at 33 with treatment inbetween.since then I've stayed on the pill to reduce issues.it was changed at 40 and again when things went haywire at 48.i now take degesterol. It certainly has helped prevent the agony associated with endometriosis xx

Hope appointment goes well 🤞x

[Jmiller623 in reply to Spanielmadlady]

Thanks Spaniel! Always great to hear from you. Questions.... what type of spaniels do you own (presumably)? Looks like an English Springer but I’m not really familiar with all the breeds. So cute.

[Spanielmadlady in reply to Jmiller623]

Thanks J.i enjoy hearing from you too.i have 2 liver and white english springer spaniels ...millie is nearly 12 deaf,arthritic, demanding and gobby and Marley (pic) is 11 deaf, very laid back and my shadow. They both went deaf at 10.they keep me moving . Xx🤗xx

[DRunnerchick]

JM- Hope the norethindrone works well for you. Keep us posted. My daughter sees GYN on 2 June (Mirena removal) for next step of controlled breakage ⛑🤞🏼

As far as unilateral wastage, I don’t have lupus (as far as I know🤔) but I have gotten that with SPS or whatever other funkiness I have. My left side has lost muscle and size (no stroke). I think I’ve lost a bit of muscle since I’ve been out of PT but it’s more than that. I’m not sure if that’s helpful 💁🏻‍♀️

D🏃🏽‍♀️

[Jmiller623 in reply to DRunnerchick]

Thanks DR. I don’t know if it’s muscle that’s wasting. More like the overlying tissue and fat. It’s like skin is a flaccid and wrinkly more on my left side. Hoping the ENT on Monday can help shed light on the issue. I think dermatology would be more likely to understand but the best one we have in our system that knows autoimmune disorders is kind of a dick. I’m hoping it’ll just stop. When I look at pictures of my fathers side, all the women had asymmetry in their face when they were older. Looks like exactly what is happening to me so maybe it’ll just stop at some point or it already has. 🤞

[stiff19 in reply to Jmiller623]

I feel like mine is tissue not muscle also. All dermy said to me is seems like scleroderma inside not outside but still no answers. I have been thinking of contacting ent doc too. Did you suffer swelling in areas before the wasting? X

[Jmiller623 in reply to stiff19]

Stiff, yes!!!!!! I was swollen first too. Nose doc said not much he can do. He’d be scared I wouldn’t heal well if he tried to correct it. He has no clue why it happened. Didn’t seem too impressed with my facial volume loss. And said he couldn’t correct it either way. So gave me some recs for some fancy nose hole straws to wear at night. Also told me my skin is very very thin.... made me think of EDS.

[stiff19 in reply to Jmiller623]

No way. Do your nostrils close? Mine closes on the right side the loss side, though my left wrist is slowly joining the party. 🤔 my skin has thinned on back of hands Definately and feet. I’m 52, dare I ask a lady her age? 🤣 Ed’s?

🤗x

[DRunnerchick in reply to Jmiller623]

I do have that problem in my upper arms/legs and face. I think the muscle group is more. Isolated to my gastrocnemius which is affected by SPS spasms on my Rt side so there’s hypertrophic gains. I only have a mirror from the waist up. Everything else is just looking down. 🤷‍♀️

Btw, love how you describe the dermatologist. 😂 Had a few of those myself!😉 Godspeed at your appointment tomorrow 🍀🌻✨

D🏃🏽‍♀️

[Jmiller623 in reply to DRunnerchick]

Thanks DR. Nose doc said not much he can do. Wouldn’t do surgery. Healing would be tough. Doesn’t know why my left face has less volume. Sent me out with recs for fancy nose straws and try breathe right strips.

I’ve had muscle group in my right arm atrophy. The forearm and my thumb/thenar area started wasting. This was abnormal because I’m right handed. It lasted for about a month but back to normal now. I moreso feel I lost the fat on one side of my face. Like I can stick a finger in my eye socket on one side because all the fat is missing. The other side is full so I can’t push in at all. It’s the weirdest thing. Just another thing to blame lupus for.

[DRunnerchick in reply to Jmiller623]

But, but, “Dr. House says, “It’s never Lupus.”

I don’t know who to blame mine on. I just know that when I had my High filuten EMG in the ivory halls last summer, the head of neurophysiology couldn’t figure it out and thought maybe it was MG. I told him that my face always had a slight difference in eyelid height but the rest was different. But this was also the brainiac that had written a textbook chapter on SPS but had never actually seen a case and said that he knew I had “something” (I’m sure that’s the technical term he used) but said it wasn’t SPS and gave me his reasoning. He noted findings, but then said it was a normal test and said I had significant, generalized muscle weakness (not age related) on the report. 🤷‍♀️

I believe my return visit with MY neurologist aka The Wizard, responded to it by saying that we already knew I was a unicorn 🦄. Don’t be thrown by the result. Asked me who was there for clarification (fellow and Dr. Fellow director) and he mumbled and then said mhmm, having a positive is nice but we know they are negative in 50% of cases. Your positive reaction to baclofen is more telling.

Weird symptoms ✅

Unicorn 🦄 status ✅

Unexplained anatomical layout✅

Premature life stages ✅

Medical 🏥 PTSD ✅

Perfect support forum❣️ ✅

Look 👀 at all the things you can scratch off your bucket 🪣 list! 😉🌹😘✨🍀

D🏃🏽‍♀️

[KayHimm in reply to DRunnerchick]

Too funny! You have those guys pegged .. 😅

What do you think the « it’s never lupus » meant?

🫂 k

[DRunnerchick in reply to KayHimm]

K- House is always sarcastic in the show. It’s never lupus because lupus is a 🦓. That came from an episode where he said that and later it turned out to be lupus. It was picked up to be one of his ongoing tag lines.

[Jmiller623 in reply to DRunnerchick]

Bahahahaha. 😂🤣😂🤣 Great summary for our encounters. I’ve given up on improvements at this point. Just trying to glide for a little if possible.

Funny thing is when I see neurologists, they all think I smell strongly of MG or MS and then see my clean MRI. Then the 🤔😬🤔 looks start. I feel you on the premature, worn out, unicorn feeling. I’ve been told by docs here to seek out a neuro specialist but I’m not even sure that would help for the effort. I did email a physician in Texas who deals in facial asymmetry to ask who else knows about this stuff in my area? I’m not about to get it fixed but it just really perplexes me how only half of our face is involved. Apparently, left is usually more affected than the right. From a medical perspective, I could read all day about zebras. Not out of fascination in diagnosing myself but I just can’t take in enough knowledge about what these CTDs do to us. There is soooooo much overlap between different diagnoses that I’m seeing a spectrum form but there is little if any attention to neuro problems on the spectrum which we all seem to have. There needs to be a rheum/neuro conference because both these specialties need to form a strong bond that currently is nonexistent.

[DRunnerchick in reply to Jmiller623]

Rheum doesn’t want to deal with me at all since they put me on MTX for 7 months and then retracted my dx. They saw me once more to make sure I didn’t die and d/c’d me from clinic. Where’s the fun in that. The working list then was Behcets, Lupus or ? Let’s see what comes of it. The oral and nasal ulcers come and go, as do the joint issues. Inflammation markers are always within nl limits.

It’s actually been my Wizard neurologist (who flies under the radar of general neuro but I know he has extra fellowships…) who has run most of my ab tests like HLA-B27, GAD-65, AQP4 etc. He’s pretty strategic. I have no idea what goes on behind his magic curtain. 🙀I probably don’t want to know and I’ve learned not to ask.😽I wish I could ship him out to you. Unless you want to connect via Zoom. That’s how all my appointments are now. Just a thought 💭

D🏃🏽‍♀️

[KayHimm in reply to DRunnerchick]

🏃‍♀️ - I am in your boat in a slightly different way. My rheumatologist doesn’t want me on the typical medications and ends up functioning as my internist and defers to the neurologist. I see my neurologist as my main doctor because he is the one who understands my main problems and prescribes the medication.

I guess I’m a neuro patient masquerading as one with UCTD. 😅

😍Kay

[Jmiller623 in reply to DRunnerchick]

Ship your neuro across the pond to me! He/she can live with me for a little. 😂🤣 I can’t believe how variable rheumatologists are in diagnosis and treatment. Something isn’t right if there is that much variability. Behind that curtain should be some guidelines. I learned my lesson the hard way to not take diagnoses away from a patients’ list until you understand how they got it to begin with. History is more valuable than the present when it comes to medicine.

The only neuro here who understood was neuro-optho. He also got me IVIG approval. But he left for Veteran Affairs Hospital this past January. There’s been a lot of turn over here with neuro. I should really seek out a good one but I think I’m just done with docs for a little. I need a reprieve.

[DRunnerchick in reply to Jmiller623]

I hear you. I was there until I had several severe falls in a short period of time including one in downtown in the middle of a street which was just a few months after a similar situation in the gym that was still being worked up by cardiovascular. If it wasn’t for my prior experience with the Wizard (thru a family member while he was a baby doc in his fellowship days) I would have just chosen to sit it out and die a potentially slow painful death. I’m not even sure he’s hit 40 yet. So, here’s hoping he’ll be around for a while. Where are you? I’m in the Pacific Northwest. I thought you were southeast somewhere…maybe we can make something work. DM me if you want.

D🏃🏽‍♀️

[KayHimm in reply to Jmiller623]

Very true!

[stiff19]

I was going to post about profundus, that’s interesting. There is another I can’t remember too causing dips and lumpiness 🤷‍♀️ My right side is leaner my wrist ankle and face and right nostril often closing up. Yes I have unilateral wasting my right wrist and hand most noticeable and a good half inch difference my face looking lopsided when not swollen . Xx

[Jmiller623 in reply to stiff19]

Have you ever looked into this? I read about this a while back but thought it too rare.... makes me wonder.

rarediseases.org/rare-disea...

[DRunnerchick in reply to Jmiller623]

JM- Just read this and then scooted over to the Wikipedia page (only the best scientific pages for me 😉). It did have a gruesome picture of a 17 y/o female with this disease as well as her axial CT view. Check it out and let me know what you think. I have nothing like this. It is asymmetrical but nothing to the degree shown in these pictures.

D🏃🏽‍♀️

[Jmiller623 in reply to DRunnerchick]

Yes. Most pictures seem super severe. But I’ve read it’s on a spectrum and sometimes stops on its own. The odd thing is my sister, my grandmother and my great grandmother all have similar asymmetry of their face in varying degrees. My sisters started around the same age as I am having it now. Hers has stopped. She had the opposite side of her face (normal side) botoxed to even it out. But no one has it as severe as I do. It’s something weird but definitely real.

[stiff19 in reply to Jmiller623]

It’s definately real . X

[stiff19 in reply to Jmiller623]

Only at a glance but will look more re skin . I know what you mean about too rare, but no one else has any answers 🤷‍♀️X