I don't even know if I can finish this post. On Friday I began feeling very weak and shaky. I didn't feel like eating when my family went out to eat, so I settled on a bowl of cereal later. I had an achiness in my right arm, chest and left back. We were going to go shopping on Saturday, but on the way I started feeling bad again. We went to an urgent care clinic where they did a mono test and ekg. AFter the ekg, I was sent to an emergency room. At the emergency room, they monitored me, did an chest xray an blood work. After a few hours they decided I had an upset stomach, gave me promethazine and zofren. This morning when I got up, I was worse than ever. I thought I was dying. I went to a local er. After testing my electrolytes and finding nothing wrong with me except weakness, they have decided to send me to Scot & White. I am now back at home, not feeling very well, wondering if this is the beginning of the end for me.
O.M.G Reanne, how very frightening for you, I hope you have someone there with you just now. Who or what is Scot & White, I am in the UK, so unfamilliar with US ways.
I am wondering if you are in a massive flare? Please do not hesitate to go back to ER if you stay uwell for much longer.
Take care now, I am sure this is not the beginning of the end dear. SS can throw all at us at times, very scary too!
Hope you feel so much better tomorrow, Hugs Dolly x
Dolly, I'm guessing that Reanne is referring to this Scott & White;
http://www.sw.org/about-us/about-us
Reanne, I am hoping that you will get the care that you need. It sounds like Scott & White has an excellent reputation. Please keep us posted.
Thanks for that Lighthouse,
Let's pray their reputation is not doubted.
Are you ok Reanne, worried about you now, Hugs Dolly x
Thanks Dolly and lighthouse.
I am okay Dolly. All of my tests were okay. They told me to rest and take it easy. I am supposed to be at work in the morning, but I don't see how I can possibly work, unless I am much improved. It just takes so me energy to do anything like eat or walk to the bathroom. I think the stress at work has contributed to this current flare. The doctor today asked if I had been tested for MS. It could be awhile before anyone sees me. Getting in to teaching hospitals isn't always easy.
Hang in there!! I hope you get the rest you need and will feel better soon!
I hope whatever it is, they figure it out.
Sounds like a super bad flare. Ive had quite a few where I thought I was actually dying, but they found nothing wrong either. When they find nothing, then I know its the autoimmune. I just take more steriods and try to ride it out. Its amazing to me at times how sick I am and nothing shows..not even in my autoimmune labs too? Its this sneaky, darn, disease....hope you feel better soon!
Gursie
Now I am frustrated!! The doctor who said she will help me wants me to go ahead and go the neurologist appointment on Monday and see what he says. Why did I even bother!?! She wouldn't even give me a note to work 1/2 days. :( What does a person do? Keep working until you drop? Get fired for poor performance? :'(
Is she your rheumatologist that wouldnt give you the note? that is nuts???? maybe another one of your doc's can help with that?
Alot of our MS symptoms can actually be the Sjogrens. I have tons of MS symptoms, but dont have MS. Seems alot of us do as well.
Im sure alot of people with MS even have Sjogrens instead. I dont think they are aware how very similar these diseases seem to be.
Gursie
Gurs,
It was a local doctor who said she would find me some help, but she can't even give me a note to work 1/2 days for a week or so to see if rest helps? I see a neurologist on Monday afternoon. I hope I am just as tired and scatterbrained as I have been this month. I want him to see me at my worst! A week or so ago, I was trying to say to my granddaughter, "I am going to lose my temper." Instead I said, "I am going to lose my temperature, temperature, temperature." It was like I had no control over my words, so very frustrating. Today I couldn't remember a town I pass by weekly. I see the signs every week and still when I saw the name of the town, I had NO clue where it was??
I want to throw in the towel at work, but I am so afraid I might not qualify for disability, then what? and waiting 6 months to years is scary. Thanks for listening.
Dear Reanne, I sure hope you get some answers on Monday, dam this complaint!
When will Doctors LISTEN to their patients?
Yes the brain fog can be frightening, but it can be associated with the stress your going through,
Stand your ground on Monday, tell them exactly what you tell us, let them see how frustrating it is.
You want answers!! Best of luck, Dolly x
It is scarier to know when to throw.in the towel. There is FMLA that will.give you time to see if the rest helps. They can not let you go. I used my short term disability to get at least partial pay. If it is not something you have through work see if you can purchase some. Health insurance benefits will need to be paid.by you...just your part. You need to have a doc to put you off work and foll forms out for short term. I got to the point I w? so exhausted I had to nap in the car in the garage before I could get into the house. I worked 3 12's slept for 2 days cleaned and caught up.to.go do.it all over. Often got called back for 4's. Not.life or living. It took about 5 months once I fired the atyny and took charge. Insurance is the.biggie. Once approved for SSD it is 2 years to qualify for.Medicare as things stand. Everyone has different situations. I was the bread winner/insurance person for us. Hubbie.lost.his sight. We lost many THINGS but gained so much more. I have been home now almost 3 years and do so much better.
Prayer, persistance,and patience got us through. Got my Medicare in July and what a relief! !!!!!!!!
Hope you find your path!
I want my life back,
How can I use FMLA if I don't have a doctor backing me? The darn neurologist I saw just said, "Migraine related." He said all my symptoms were due to migraines without headaches and the headaches I do get early in the morning at the back of my head are migraines, even though they are nothing like the migraines I used to get. As of right now, I have about 9 weeks of vacation/sick leave I could use. I would get full pay, keep my insurance for a couple of months. My husband also carries me on his insurance, so I really don't pay much to go to the doctor.
I see the rheumatologist this Monday. I am going to talk to her (again). I think she at least believes my symptoms. I will probably be in tears. I have lost 10 pounds in the last month without trying, I am still very weak feeling, achy, and had laryngitis twice. Something has to be wrong, but everyone says all my blood work is good? Do I just keep going until I pass out or fall?
I don't know if my family really knows how bad I feel. Is it really nothing, but mindset? It just feels like I will never feel good again.
Reanne, sweet dear.
As I was reading your post I couldn't help but keep thinking the tests they were running were insufficient to discover what you really needed.
I've been doing a lot of research and your symptoms are consistent with CNS involvement. I believe that the neurologist is your best bet. I hope you have the strength to get there, if not, you may can go back to the ER and advise them that Sjogren's attacks the CNS and PNS.
The fatigue comes from the CNS system. Your other symptoms could all be nerves as well.
I'm praying for quick discovery and treatment of you symptoms. I am so sorry you are going thru this. Please keep us aprised as events unfold. You are teaching us all here with this event.
Take care,
iraisin
iraisin,
thank you for the prayers. I had an MRI which showed only a sinus polyp. My brother had sinus surgery and died a few months later from cancer, which spread to his brain. Naturally this concerns me, but the neurologist didn't bother calling me. My local doctor set me up an appointment with an ENT. As far as my brain, brain stem, etc.. it is "unremarkable". Like so many others, it is scary to feel so bad and not have anything show up.
Reanne, I am exasperated for you. I understand your distress and frustration. Prayers going up.
Take care,
iraisin
Hang in there girl, I have been in that dark place too. You feel so weak and that your body is actually dying, I am sure now that its something in the central nervous system or from the brain that is sending these signals. Doctors seem more and more worthless everyday, its sad when the patient knows more about whats happening to them than the doctors. I dont know how to make it pass, it just does at some point and then you feel better.
Reanne hoping that you get answers.
I would stop by the hospital or your Dr. office and pick up all the test that were done. Take them to the ENT appt.
Hope you are feeling better.
Will your PCP or the doctor who said she will help you get this figured out sign off on the FMLA paperwork? There is intermittent FMLA that says you can still work but will need time off intermittently or there is one saying you are going to need to be off for an extended time. Contact you employer for the paperwork and explaination of FMLA. You will still be using your accrued vacation/sick time, but if you run out while on FMLA they have to give you time off without pay, they can't fire you. FMLA just protects your job. if you have STD or LTD that will kick in according to the policy guidelines.
Just explain to the doctor how this is making it difficult to perform your job and fill out the forms together, that is what I did with my doctor. Just be aware there is a limit of the length of time/# hours you can be on FMLA and you have to refile after a certain amount of time-it does expire. so keep on top of that.
Maybe this will give you time to get this figured out and a game plan that will work for you.
I hope you feel better and get some help soon!
Nancy
Yeah, guess you need to find a good doctor that will back you...most important thing of all.
Your symptoms sound like mine...they really couldnt find anything so Im chalking it up to the sjogrens and lupus.
Again, sounds like the CNS of sjogrens..I have most of what you have..its horrible...Not much can be done about it either. You might
need more agressive treatment though.
Hormones can cause alot of this stuff too..make sure you get them all checked. My neuro issues kicked in when I went into
instant menopause from a hysterectomy.
Gursie
thanks Nancy,
I will call my employer or look it up in our personnel policies before I go Monday. No the one that said she would help hasn't done anything! I saw her today because I have another URI. She ordered a shot of decadron and script for amoxil. I told her I was still experiencing extreme weakness and the neuro didn't want to do the paperwork for me to work less. His idea was it would make the "migraines" without headaches worse to change my schedule. I should have asked, why isn't it worse on weekends then??? I the rheumy doesn't help, I have no where else to turn. I think she surely will? She will comment on the fact that I've lost 10 pounds since I was in there last. Anyone that knows me, knows I don't diet. I have NO will power. I don't think the local doctors realize how many calories it takes when I feel this way. Another symptom I don't say much about is an overactive reaction to things such as noises. While we were waiting for my script, a bell rang and I nearly jumped out of my chair. This seems like such a hopeless situation. :( I am hoping at least if I do quit, running to all these doctors will help my case with disability.
gurs, I had a hysterectomy years ago. I don't think it would just now kick in? They removed my ovaries at the time, so I was in instant menopause also. gurs are you on disability? or have you tried?
No answers for you, but many prayers being said for you!
Cricket~
Have they tested your inflammation markers...e.g. SED rate and CRP? Sometimes when my inflammation gets out of whack I get all sorts of bad symptoms including extreme weakness of the extremities. Just a thought?! Sounds like you need to find doctor(s) who support you and will look for answers with you. I fired at least 10 doctors before I found a great PCP and a fabulous Rheumatologist ! Hang in there...and don't quit asking questions/seeking. I had to go out on disability because working was impossible with all my symptoms. But it is essential you have a team of doctors behind you to back you up. Hoping for the best for you!
Yes, I have had those checked. I don't think my sed rate has been high since starting the plaquenil. I did have to drop down the plaquenil to 200 mg, because of bad headaches. Something is definitely wrong. Feeling so bad affects my cognitive skills. I will have a heart to heart with the rheumy on Monday. I need to find a doctor that will treat me and help me instead of thinking there is nothing wrong with me.
Might check cortisol levels. I think low cortisol can make you jumpy.
Hope you get answers soon!!
I was so frustrated at my rheumy visit today. I asked the nurse about getting a note about working reduced hours. They no longer do any type of disability. This is a disability issue according to the nurse. My PCP should write a note. I told her they told me to ask the neurologist, which refused. He said it would make my headacheless migraines worse.
She has once again changed my diagnosis to:
osteoarth non-unspec
myalgia and myositis
sjogren's/sicca syndrome
rheumatoid arthritis
sponydlopathy (cervical)
High risk medication (plaquenil)
She wants me to have my eyes more thoroughly examined since I've never had auras before with previous migraines and now have them without headaches. She also is going to set me up with a neurologist she works closely with to do some muscle/nerve tests and possible muscle biopsy. The other choice is to get evaluations done at a research medical school center. I think she wants my PCP to do that, but she won't even give me a note for shortened hours?!?
I have decided I am going to write my supervisor and request 6 hour days to burn off my annual time before I lose it. If she says no, then I am going to ask her supervisor. I will lose 90 hours if I don't take it before December 31.
So very frustrated.
So sorry, Reanne. God bless you dear. I sure hope they let you shorten your days. It sounds like a reasonable compromise even if you weren't sick.
Let us know how it goes.
Quote from: Reanne on October 30, 2012, 07:39:06 PM
Now I am frustrated!! The doctor who said she will help me wants me to go ahead and go the neurologist appointment on Monday and see what he says. Why did I even bother!?! She wouldn't even give me a note to work 1/2 days. :( What does a person do? Keep working until you drop? Get fired for poor performance? :'(
Reanne, my heart is with you! I am 'divorcing' my rheumie, am so beyond tired of what I call being Ping-Ponged around by these doctors. In '09, I was written up and nearly fired due to Chronic Fatigue Syndrome -- now know I have SS. Last month, same boss wrote me up for "not showing initiative". I have been at my job 15 years and have worked hard. Yes, we are supposed to work until we drop. At last rheumie appointment, I had a horrible flare of blepharitis going on -- it was visible to him -- and I was in tears with fatigue. Told him I'm leaving my job soon and applying for disability. He said "I tell my patients that disability is not the way to go." He looked at me like I was crazy. A few days later, I logged on to my medical records and he has added to my diagnosis "post menopausal disorder"...so in my mind, those of us diagnosed at 50+ are going to be categorized as hormonal nut cases. For those of us who have great relationships with doctors, congratulations. My only advice to those of us who do not, is assertiveness and Trudging Onward...even though we have to do it in a sheer state of multi symptom illness. "Strength in Numbers" everyone, and having this site is a godsend.
MaryBee,
I am sorry for you. Isn't this crazy? I have worked all my life, same job 18 years. It's not like one day I decided I don't want to work. I WANT to be able to work without feeling bad. If I knew how to find a doctor who would be supportive, I would change right away. It seems no one wants to be involved in disability cases. They take up alot of time and patients get mad when they don't qualify. At least that is what I was told by the nurse. I asked her, "How can anyone blame the clinic when Social Security makes the decision?" I have talked about fatigue for years to the rheumy. It's just come to the point, that I can't physically do the work very well anymore. Written up for not showing initiative?? That is just crazy to me. I agree without this site, I would be convinced I was just lazy. :(
Reanne,
I can guarantee your hormones are causing the majority of your issues...It doesnt matter that you had your hyster years ago...hormones change at anytime. My friend had her total hyster 20 years ago and just now experiencing menopausal issues, which can be linked to alot of your symtpoms..I never got migraines before my hyster, and now have aura's most of the time, Im learning to take motrin, tylenol, and medrol to help with the headpain. Im so dizzy most of the time too...tons of Neuro issues, alot of MS type symptoms and also was diagnosed this last year with POTS, which can be from hormone dysfunction and Sjogrens. Ive been in the ER so many times, and have seen countless doctors, hormone specialists, so many tests, its crazy. The hormone inbalance throws of our immune systems and then makes any of our autoimmune stuff even worse. I forgot if your on any HRT? Im on a bio-estrogen cream-with testosterone, but cant get my levels up and have a hard time tolerating it. My doctors agree the hormone changes can cause alot of these symptoms. I guess your estrogen should be at least 200. Next time you go to the docs, have them run some blood work on ALL your hormones. They may say they are ok, when actually, for you, they might be too low. Each person is different.
Second..please hope you can find a new doc that will work with you on the disability thing. My doc is the best!! I was lucky to have LTD with my prior job, which I loved to death by the way, but just couldnt keep up. I was sick all the time. Then had to fight for SSD that took me two years to get. I applied on my own, got denied, even after letters from John hopkins, clevelend clinic, and numerous labs that confirmed my sjogrens/lupus/RA diagnoses....My LTD provider paid for my attorney and had to file appeal, which took 1 year...ahhhhh,,,,,,not fun. Got it but had to wait then for medicare. I also learned the docs have to list every single little thing..like fatigue, joint pain, migraines, extreme vertigo, cognitive dysfunction, etc...everything!!! memory issues especially.
First things first..find a new doctor..without a supporting doctor, your in trouble. You wont get anywhere. Not sure what State you live in, maybe someone on this site and give you name of a doc. Hard to find a good one I know...PM me if you need further info too ok...
Gursie
I tried signing up for disability years ago and told my doctors about it.. It seemed like all of them did everything they could to stop me from getting it.. I got tired of fighting them and gave up.. This time when I applied for disability I didn't tell any of my doctors.. I just made sure they had everything that was wrong with me in my files.. My lawyer requested all of those files from them and I got approved for disability.. Most doctors don't want to get involved, especially if they think they may have to fill out something and not get paid for it.. For me it was best to leave them out of it...
I also found it is easier to work with a Nurse Practitioner if you need paperwork filled out like for FMLA..
Quote from: MaryBee7 on November 20, 2012, 03:14:40 AM
Quote from: Reanne on October 30, 2012, 07:39:06 PM
Now I am frustrated!! The doctor who said she will help me wants me to go ahead and go the neurologist appointment on Monday and see what he says. Why did I even bother!?! She wouldn't even give me a note to work 1/2 days. :( What does a person do? Keep working until you drop? Get fired for poor performance? :'(
Reanne, my heart is with you! I am 'divorcing' my rheumie, am so beyond tired of what I call being Ping-Ponged around by these doctors. In '09, I was written up and nearly fired due to Chronic Fatigue Syndrome -- now know I have SS. Last month, same boss wrote me up for "not showing initiative". I have been at my job 15 years and have worked hard. Yes, we are supposed to work until we drop. At last rheumie appointment, I had a horrible flare of blepharitis going on -- it was visible to him -- and I was in tears with fatigue. Told him I'm leaving my job soon and applying for disability. He said "I tell my patients that disability is not the way to go." He looked at me like I was crazy. A few days later, I logged on to my medical records and he has added to my diagnosis "post menopausal disorder"...so in my mind, those of us diagnosed at 50+ are going to be categorized as hormonal nut cases. For those of us who have great relationships with doctors, congratulations. My only advice to those of us who do not, is assertiveness and Trudging Onward...even though we have to do it in a sheer state of multi symptom illness. "Strength in Numbers" everyone, and having this site is a godsend.
I left my job with an online travel agency when I married my husband and moved to the Houston area .... I have tried to find another job locally, with no luck. Finally I gave up on finding a job and began selling travel from home. Now that this disease has raised it's head, I am so happy I don't have to work away from my home or answer to a "boss." Of course, I don't puy a lot of effort into advertisement or building a profitable business - I couldn't keep up if I did that. I make a little $$ to help some ... but I couldn't support myself if I had too.
I will save my rant regarding misinformed, self-centered, holier than thou DOCTORS.... I refused to even go to a doctor for 8 years because of all their quackery. I am fortunate to have found 5
really good doctors now - all of them are very supportive and informed in autoimmune diseases. (Rheumatologist, General Practitioner, Eye Dr., Allergist, and Dermatologist).
I also know that my doc charges like $15.00 for form fee for the medical statements that SSD and my LTD provider need. They bill my LTD provider I guess..not sure about SSD. Its well worth it though. I would gladly pay for it.
I guess its hard for doctors to have the paperwork done. It does take alot of time etc, but if they really CARED about their patient,
they would I guess. I would start looking for new doctor in the meantime. This is your life..
Good luck
Gursie