Author Topic: This Has Come As A Complete Surprise... Thank God for My Derm  (Read 483 times)

brizzo

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This Has Come As A Complete Surprise... Thank God for My Derm
« on: November 18, 2019, 05:49:19 AM »
Good Morning Everyone.

I find myself part of this community now. I am 57 yers old. I work in Dermatology Drug Sales and recently, I had my Derm do a full body exam. He spotted the matted telangiectasia's and some vascular changes in my fingers. He sent me out for a full panel to test for Mixed Connective Tissue Disease... my Anti-SS-B came in at 2.3... BOOM!!!! I bucked the trend. I am the 1 out of 10 who are male. Being that I am in Derm and have been for 22 years and I work with Biologics, I was uniquely placed to tease out the rest. Vasculitis, Xerosis, Fatigue, Fog-Brain (my work performance is degrading), A variety of joint pains, Connective tissue fraying and tearing, Raynaud's, Kidney functions all in the red... the list goes on. I suspect RA but it is not symmetrical so it could be anything else. I don't have the dry eyes nor the dry mouth.

The Derm said in his opinion that this has been running active in my body for, at least 8 years. It seems to be accelerating. I'm waiting to get into a Rheum. My Primary Care Doc wants to re-run the kidney functions to rule out high protein/dehydration or NSAIDS. I noticed all the pain when I went off my NSAIDS so I could have PRP injections in my right shoulder which has seen two surgeries already.

In a small way, this diagnosis is a blessing... Yes, I know that sounds odd. However, my mother died of Multiple Myeloma. It was inexplicable as there is no family history and she was never exposed to industrial chemicals or radiation. My sister, right now, has Lymphoma and her Oncologist was puzzled by her: Dry Mouth, Dry Eyes, and extreme Fatigue. At least she now knows and can get tested. We had no idea that this genetic time bomb was ticking away.

I have been doing an enormous amount of clinical research but there are too many variables and not enough of my own data to go on yet. I have to see how this progresses. I am nervous as to what the future holds for me. I am less concerned about the cancer looming than the kidney functions. I'm sure they can "calm" my immune system down with DMARDS... I'm just not thrilled with that. Prednisone is out if I can help it. I don't know how long my employers will allow me to continue. I don't know how hard it is to be adjudicated disabled if it looks like my ability to do my job is degrading. I'm only 7 years from retirement and I have a great long term disability policy. I just don't know. I don't know if the next five years will be my best years and that the next five will be exponentially worse. The only thing keeping me on my feet is the adderall that I take for adult onset ADHD... which I now think is actually Sjogren's brain-fog.

I do know that the arc of my life has changed dramatically. I do know that there will be a "new normal". There will be restrictions and changes. I am sure to not make it as long as I thought. The actuaries had me pegged at 92. I think I will be lucky to hit 80. That factors into my calculus. I have to make sure that my wife has what she needs to continue on in retirement and not be left destitute. In the space of 9 days, my life has been turned upside down.

I just wish I knew what the future will bring.

Thanks for letting me vent this here and tell my story... thus far.

araminta

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #1 on: November 18, 2019, 06:30:33 AM »
Hi Brizzo and welcome to the forum.   I'm sorry you've had this unpleasant surprise, however it sounds as if things have been not right for a while, and maybe it's better to have some idea of the cause.   After that you will be able to find medications and other types of help to ease symptoms.

This forum has given me a lot of ideas about how to relieve various problems like dry mouth etc., I think you will get a lot of support here.   Try not to get stressed while you're waiting to see a rheumatologist, that will just exacerbate any symptoms.   Do some things to take your mind off them, you don't want them to dominate your life.

I hope you find a good rheumy.   Do keep us posted.  :)
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

brizzo

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #2 on: November 18, 2019, 06:40:16 AM »
Thank you for that. I appreciate the advice and support. I was hoping to find a place like this. I don't want to burden my wife with a constant stream of "updates and symptoms". However, there are things I simply cannot hide. The vasculitis is jacking up my toes. The Raynaud's is very noticeable. At least, having this forum allows me to find other people who understand, have been through it and have tip and ideas. I'm trying not to stress. It is work that has me the most stressed. I just don't know what the future will bring.

At what point did Sjogren's pull anyone of you who are reading this, out of the work-place? How hard was it to get your disability?

Yeah... I am fixated on this right now. Mostly because it is a real fear and the only thing I can control. My body, this wonderful meat wagon that was given to me at brith and has served me so well, is now my enemy.

brizzo

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #3 on: November 18, 2019, 06:49:37 AM »
Oh... as for the Rheum... I am so bloody lucky. I know just how fortunate I am to work in the business that I do. I have access to some of the best Rheumatologists in the US. I wrote to one this weekend. She is brilliant and her standard of care/compassion are tremendous. My Derm is a genius. He will want me to see the Rheum he refers to. Which I will but I am going to get a second opinion. I looped my Primary Care into this as well and eliminated my ADHD Doc. I am assembling a "care team". I don't think I will have to wait weeks to get into the Rheums because of personal relationships.

When I considered this disorder initially, I thought that one of the Biologics (most likely a TNFa) would help regulate my immune system but the TNFa's all have a black box warning for Lymphoma and my risk is elevated. The newer IL-17A's won't have a broad range of indications. They are too targeted at PSO and PSA. It wold be great if I could respond to them as they have no black box warnings but... no avail as of yet. I "sell" secukinumab (Cosentyx) and launched this IL-17A treatment 5 years ago. The irony of working with the human immune system and regulating it when it becomes overactive and having a disorder that won't respond to Biologics is not lost on me. Drats!!!!

irish

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #4 on: November 18, 2019, 12:46:23 PM »
brizzo, You have a very interesting history indeed. I am a 76 year old nurse(they say I look younger and I can touch my toes, etc.) I try to keep my hx short. Became fatigues and many symptoms after a traumatic brain injury in nurses training. Dealt with stuff for years. Tingly legs and toes, weakness on and off, dry mouth that I gave little attention to cause I chewed gum all the time. Pain in joints, carpal and ulnar tendon issues, etc. I lived in the doctors office at time. Meanwhile I started having increased infections and could not shake infections. Doctors told me it was in my head, over reactive nurse!!!!

So, First diagnosis in 2002 by my Dermatopathologist after biopsies and C & S was Bullous Pemphigoid with fungal and bacterial infections....Bullae 13 cm on right upper arm. In 2003 lip biopsy and sjogrens Syndrome diagnosis. Between 2002 and @004 I had the rest of my teeth pulled under anesthesia and carpal tunnel surgery. In 2003 after diagnosis off SS my eyes became dry... 39 years after symptoms of SS started. I also lost the hearing in my right ear in 1997 from undetermininate condition. In 2005 had Mycobacterium kansasii and treated for 1 year. The referred to immunologist who found Myasthenia gravis (which he determined I had for 40 years) Hashimotos and severely low T-cells. Like really, really low. and somewhat low IgG levels.

I have been on IVIG since 2006..80 grams once a month. The infections are much less but I have picked up some other diagnoses included Arterial venous malformations in my colon and needed 2 series of laser treatments to colon for bleeding. Blood transfusion once. Also test for hearing loss in left ear and have 2 individual antibodies that are trying to kill off my hearing. Plus another infection problem. So be it.

 I managed to hobby farm and raise three boys with hubby (he was a territory manager for a company and traveled a lot) . I ended up retiring in 2003 at age 60. I got up one morning and said I couldn't do this anymore.
The plan was I would rest and find out why I sick (like I had spent years doing this already)... and here it is 2019. All I can tell you is there is nothing set in gold about illness. We take care of our illness and ourselves and we do what we need to do to keep working. I had to change jobs and also my schedule to get myself to work. It is hard to quit. You are right, one has to figure out all the financial stuff so that you keep a budget and watch the medical insurance issues. I was lucky cause right after I quit one of my doctors told me to apply for disability and they approved it first time around.

Anyway, some days are boring and some days go fast. The good thing is I don't have to drive to work 15 miles at 6AM in a blizzard anymore. I can stay home if it is raining. I get to watch the TV shows I want to and There are great educational videos on line and crafts plus whatever we can conjure up. Sooooo, you fly by the seat of your pants like most of us who have chronic disease and enjoy your life the best way possible.

Do not feel sorry for yourself because in suffering comes great understanding of the world around us. In fact, there are days we are our best friend. It is also very humbling to sit in a clinic waiting room and see all the people who are in worse shape than you are. The one thing that is an issue for most of us is that we don't look as sick as we are and people we talk to remind us of this. They expect more from us then we can deliver. That being said....Keep the glass half full. Good luck and come back when you can. Irish
« Last Edit: November 20, 2019, 09:44:14 PM by irish »

Kathy57

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #5 on: November 18, 2019, 02:42:53 PM »
Brizzo,

Welcome to the group!  None of us really wanted to be a part of this kind of group, but if you are sick, then this is the best place to get info and support.

I am a registered nurse who has worked since 1977.  I just turned 62, but I was diagnosed with this illness when I was 57.  I?ll never forget it.  I was so sick that I felt compelled to just quit my job because I felt like I could not function,  and I knew that people?s lives depended on me.

At the time I hadn?t been officially diagnosed but I was diagnosed soon after.  My Rheumatologist saved the quality of my life as far as I am concerned.  It took me almost a year to feel significantly better and honestly, I could not have done it without the encouragement and support of the people here.  They patiently answered my many questions and gave me support when I needed it.

I too was happy just to get my diagnosis!  Just to put a name and treatment to my illness!  It had been going on for years but just had come crashing down.

I actually went back to work for three more years after my diagnoses but only part time.  I honestly don?t think I could handle full time.  The hospital I worked for is being taken over by a larger entity and my entire department has been eliminated since last February. 

I know I could find another part time job if I wanted to but not in the area that I would like.  I decided to retire for now and am happy to be able to.  I thought about disability but my husband had a fit because he said I didn?t need it.  I believe I would have qualified.  To be perfectly honest, I know I am well past my A game.  I cannot function anywhere near as well as I used to.  Maybe life was sending me a message?

I love my husband but he can be so darn bossy!  I think I should have applied for disability because I have worked full time my entire life!  This never was about him, but I am very lucky, that I don?t have to work.  I collect a pension and have just taken my social security early.

I know you will find your way!  Welcome!

Kathy
« Last Edit: November 18, 2019, 07:41:49 PM by Kathy57 »
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

SjoGirl

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #6 on: November 18, 2019, 04:53:20 PM »
Brizzo,

Welcome even though this is in some ways a community that no one wants to join.

You have assessed your situation in a way one might anticipate from someone with your background. I do wonder if your knowledge is a blessing (though based on some of your comments maybe a curse).

I don't have a lot of time to write but will share a few thoughts:

1. When I became ill 12 years ago it was like an old fashioned clock suddenly burst open and parts flew everywhere. I was barely able to function, missed months of work and overall several years of my life working to find a diagnosis.
2. It took about 5-6 years to finally find a treatment that worked but thank god it did. I went from barely functioning to winning an award last week, one which peers in my profession bestowed on me. I could not have remotely imagined this happening 10 years ago.
3. I too have tried to calculate life expectancy. There were seven in my family and I am the only one left. Four died before age 70 and I am in my early 60s. I have had to stop thinking about this because every day is a gift and I don't believe anyone can predict how long I will live. Also, it could be something that I have not even imagined having or transpiring that will kill me.

This is a marvelous group full of strong, smart people who support one another. Do turn here as often or as little as you wish or need. We are here, someone will respond.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Deb 27

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #7 on: November 19, 2019, 11:12:28 AM »
Sorry about the diagnosis and welcome to the group. It's a great place to come for support and information. I am sero negative ( no antibodies) and was diagnosed with a lip biopsy.

I think I had the best results from lifestyle modifications. Going gluten free helped ( I cheat a little) and dairy free. I take plaquenil. Getting plenty of sleep and rest helps.

I started having problems in my 50's after having colitis and I retired at 63.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

susanep

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #8 on: November 19, 2019, 11:32:02 PM »
Welcome Brizzo,
I am sorry you have to go through all you are, but this group does understand. I have sjogren's and other overlapping diagnoses. I had to quit working in 2010 as a teacher.

I worried so much about knowing I needed to stay home, and these fine people on here helped me to think out things.

I just one day came home and said that is it. I know also that I had this for many as I  look back. I am 66.

I live a very different life now. I have a simple life these days, and I am just glad I am here to enjoy my my husband, son, and daughter in law, fur kids, hear the birds, and piddle around.

I have seen many times the beauty and wisdom in the simple that I don't think I would have known otherwise.

My husband is very understanding, and he is also disabled.

It isn't always easy for sure, but it's not like I went out to shop for this.  ::)
I try to always keep a sense of humor, and laugh whenever I can.
People around me have learned that I have little energy.

You come back whenever you want, because you will always be welcomed.  :)

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

brizzo

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #9 on: November 20, 2019, 05:49:40 AM »
This is a wonderful and welcoming group. A true community. I suppose I have a new "clan" now.

My progress thus far: I went back to my Derm during a sales call. he was still on vacation. I asked the staff which Rheum he refers to. They gave me his info and I made the call. I am getting in to see him tomorrow. I have all my information in one place for him to see. My latests regular labs including CBC's, UA and BMP. My A/A MCTD panel with my Anti-SS-B findings of 2.3. My symptoms, dates, places, the what's and why's of each. Photos of each. List of previous and current medications. My entire medical history on two portals. This should give me a jump start with him. I have also been in contact with, what I believe is the finest Rheum in the SF bay Area, Dr. Elaine Lambert. She has spoken for me on several educational dinners for Cosentyx. She is competent, experienced, a brilliant diagnostician and her compassion is enormous. I have great respect for her. I am expecting tests, tests and more tests. My P/C Doc and I are going to re-run my labs on Monday. We want to see if 25 days off NSAIDS changes my Kindey numbers... or if increasing my water intake changes them as well. We need to rule out those two variables (or get confirmation) before we place the Kidney issue at the feet of the Sjogren's.

My extreme fatigue has been masked for the last 7 months by large doses of Adderall. 80mg a day: 40mg am and 40mg pm, goes a long way towards masking the fatigue. I am now on Vyvanse which is a much gentler dose and is sustained release... the fatigue is now very noticeable. I'm still trying to get a handle on my weight loss. I am a fitness "fiend". Up until 10 weeks ago, when I blew my shoulder out again, I was doing 1,100 push-ups at a pop as a regular work-out. I am taking in, on average 3,300 calories a day. Yet... I dropped from 181lbs to 165lbs in 6 months. The weight loss could be an increase in my BMR... but the literature argues against this.

I am worried about a bisected, swollen lymph node under my right axilla. It wasn't there a while ago. However, my WBC is all in the green.

Good news about my feet and the vasculitis/Raynaud's... While the Raynaud's can get pretty severe, the vasculitis in my toes is starting to resolve. The "cherry red/black" bursts are finally starting to fade. I no longer fear losing those toes. However, I now know that this is a sign of a flare for me. At least it is very, very visible. My feet still go numb at odd times. They actually go "cold' in a hot shower. Any temperature swing will cause issues with them or my "vascularity" all over my body.

The joint pain in my right hand is shifting around but not resolving. The left is just a little stiff. The right is hosed. It is not symmetrical so I am not sure it is going to turn out to be RA. However, everything is on the table here... from RA to OA to Carpel Tunnel.

My short term memory is just hosed. If it were not for sticky pads and "Siri", I would be lost. My cognitive ability is ok still. I am planning on asking for neurological tests as well.

My employers know all about this. I let my immediate boss and her boss and HR know. There is a degradation in my performance and I wanted them to know the reasons. I did not go from a 22 year, award winning veteran in Derm Sales to crap overnight for no reason. Between the Sjogren's and the ADHD (both ADA protected conditions), I am fairly insulated from involuntary dismissal for the immediate future. However, they just "cut me" from  the "work-stream" I participate in. This is work above and beyond my regular job. That kind of scares me a wee bit.

I'm doing everything that I can to drill down and get an idea of what the future will bring. However, in reading all your accounts... I think I would need a crystal ball to understand the "arc" of this thing. It looks like it can go anywhere. If I can eliminate the Sjogren's from the Kidney's then it is all Muscle/Joint pain, fatigue and brain-fog. If it is going after my Kidney's then I could not begin to tell you what treatment direction we would go in. Some immunosuppressant DMARD. None of those are fun. No Biological treatment though. The IL-17a's are too targeted. The IL-23's don't' have any indication yet for anything past the skin. The TNFa's... they have a black box warning for Lymphoma... my mother died of Multiple Myeloma and my sister has Non-H, B cell, MAST Lymphoma... and the classic signs of Sjogren's. I am at too high a risk for a TNFa.

It is going to be a journey. I am forever grateful for the support and love of my wife. I am forever grateful for the career I am in and the tools it has given me. I am forever grateful for having found this support group. This is the hand that has been dealt to me... I have no choice but to play the cards in it... and I do NOT intend to "fold".

Be well all.

B.

bloodless

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #10 on: November 20, 2019, 07:38:43 AM »
Welcome. I'm a sticky pad junkie too. I set up reminders on my phone and calendar too. Sounds like you're staying on top of your disease. That's good. Don't be afraid to change docs either.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

irish

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #11 on: November 20, 2019, 01:02:14 PM »
Thanks for you long post on your health status. I suspect you will be busy with doctors. I just wanted to tell you something you won't want to hear. Moderation in exercise is necessary. Our bodies with autoimmune disease are greatly affected by stress. This includes good stress and bad stress. By good stress I have to tell you that every one of my sons weddings ended up with me on the couch with a taper dose of steroids and missed work. All from dancing and having a good time at a wedding. I learned about "good stress".

Also, exercising is very hard on us and it can really give us trouble with our tendons. I pulled a weed and ruptured the tendon in one of my fingers. Bummer. I am working up to having my 4th carpal tunnel surgery. I didn't even exercise and need my 4th surgery since 2004. Two times in each wrist.

Sounds like you have your plate full but you will get through it. Attitude is half the battle. The things that attack our body can come all at once or a little at a time. It can be overwhelming at times but taking one thing at a time is the only way to get through it. We always say on this site that we have a bunch of tough people who have learned to live and endure. Again, a positive attitude is everything cause a negative attitude will really knock your socks off. Take care and good luck. Irish


Something I thought of that you might be interested in. This doesn't happen much but we have had a couple of people with it over the years. It is called RTA or Renal Tubular Acidosis and it is usually found in Sjogrens syndrome.






« Last Edit: November 23, 2019, 09:05:51 PM by irish »

irish

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #12 on: November 20, 2019, 09:43:33 PM »
I was just reviewing your last post cause you have so much going on. Still wondering if there is anything else I might be able to address. Your employment hit me. I have always tried to tell the new members that it pays to keep in mind that they might need to change jobs over the years. This is because of losing energy and just sort of losing their edge. It happens. WE aren't dumb, but at times we just have down days.

I have told them to maybe do a 1 yr at a vo tech too pick up some skills in another way that could help them down the road. You are probably way beyond this, but I tell them to get their finances lined up and if possible get mortgage free. Learn to live a simple live and be content to entertain yourself at the library or at free events in the area.The truth is, we don't need to live high off the hog. Most of us older ones grew up where everyone was in the same position. Slightly poor!!

It is very humbling to have to change our way of living but it doesn't kill us. If anything it helps to enrich our lives and make us stronger. It should help out kids learn to appreciate things morel and appreciate being able to have the ill parent around. Just some food for thought. It is an adjustment. Thanks Irish


brizzo

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #13 on: November 22, 2019, 08:54:26 AM »
Irish... Thank you for the advice and encouragement. I was thinking along those same lines on both of your posts. It is a bitter pill to swallow for both. I am an exercise and fitness junkie. I was planning on modifying my workouts anyway. closing in on 60, I was of the mind that I might want to go back to yoga with very, very light weight work-outs (and plenty of recovery time in between). Up until a few weeks ago, I could pull 6-10 hour ays in the backyard on our beloved garden. Now, I am useless. Those darn tendons!!!! Both shoulders. Right ankle. I'm sure there will be more. As for work... wife and I are within striking distance of retirement. Not quite there yet but I've already worked with our financial planner to make sure that my wife is going to be well taken care of in retirement. There is not much else I can do for a living that would not be harder on my body than being a Pharma Rep. I spoke with an attorney and my Rheum and the info on long term disability is disheartening. I've paid extra into my LTD plan over the years. It kills me that this is going to be an expensive fight... and one I am not guaranteed to win. Well, we've no children and we got married late in life (# 2 for both of us). We don't live a crazy lifestyle. However, prices being what they are in Northern California, without two incomes, we won't be able to hold on to our home. I've got to pull it together, do the best I can and keep moving forward till I can no longer or it looks like they want to "RIF" me out. I am already on the "poop list" and I am reasonably sure that if they do reduce the salesforce, I'm one of the one's they will RIF out. At least at that point, we might be closer to retirement and I will have a severance. As for LTD and another job... if I can get adjudicated by MetLife as disabled, they will still revisit it at year two and insist I try to find another "comparable" position BUT, the law is clear... it has to pay at least 80% of my pre-disability salary and bonus. There is NO WAY there is any job that can meet that standard. Oh, well... one day at a time.

jazzlover

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Re: This Has Come As A Complete Surprise... Thank God for My Derm
« Reply #14 on: November 23, 2019, 04:10:27 PM »
Welcome!!

I am approaching age 69 and have been disabled since 1994. What pushed me over the edge was Interstitial Cystitis, associated with Mast Cell Activation Syndrome. At the time, I was not dxd with MCAS.

I was diagnosed with Sjogren's when the doctor was looking for Lupus. My  count was very high. I think it was 8 something. I have probably had SJS for at least 15 years. I don't take any meds for it. I also have Raynaud's and all the stuff in my signature below.

I hope you find much joy in life... It is there for the taking.

Glad you found us, but sorry that you have so many life changes all at once.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease