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Re: Re: Another Health/Disease Related Question [1 Attachment]

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Rose thank you so much for your response. I thought I was loosing it. I keep telling my doctor about it and she keeps brushing it off. I will have to keep reminding her. Thans again for the support and some explaination to this.

To: neurosarcoidosis Sent: Thu, December 2, 2010 1:32:44 AMSubject: RE: Re: Another Health/Disease Related Question [1 Attachment]

La, I know that several of us have this lovely problem. It's been happening to me for probably 7-8 years. Any exertion (like putting on my sox) will increase the flushing & perspiring, but I can also be just sitting reading or watching TV & I feel my cheeks getting hot. It feels like a sunburn. Sometimes it's so hot I have to rub ice cubes on my face or often in restaurants I'll hold cold drinks glasses against my cheeks. Nobody has a definite answer; the assumption seems to be that my hypothalamus was damaged by the sarc, so that my thermostat is busted. Interestingly, my psychiatrist recently wondered if I might be experiencing serotonin syndrome, which is a reaction between the SSRI group of antidepressants (Prozac, Paxil, etc.) and other drugs. In my case, he looked at the Klonopin I take for PMLD (Periodic Limb Movement Disorder; a neurological disorder similar to Restless Legs) and Ritalin

that I take basically to stay awake. We decided to switch my antidepressant from Effexor to Welbutrin, which is not prone to causing serotonin syndrome. Since the switch, my daughters & I all think that the flushing has improved; could be a placebo effect, but I'll take it. The cooler weather shouldn't be a factor, as winter has it's own problems--like the crazy people who heat their houses & stores! Anyway, I'll attach a photo of myself a few years ago with ice bags attached to my face with my bra! If you can't open it, it's in the Rose's World album in Photos on the NS website. You can find the website at the bottom of all group messages, including this one. Click on the archives or members database.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: ladyt19119@...Date: Wed, 1 Dec 2010 22:16:53 -0800Subject: Re: Another Health/Disease Related Question

I am sorry I have so many questions everyone. I am just trying to get a handle on this. My cheeks are always getting hot and flushed and red. Is that normal for the disease? I know that is a symptom of Lupus. But can this also occur for Sarc patients as well?

To: Neurosarcoidosis Sent: Thu, December 2, 2010 12:43:59 AMSubject: Re: Disability La, You are in a very difficult time of the disease process, and all your feelings are very common. I also believe that just about everyone gets denied the first time. I am one very blessed women, My Husband takes good care of me, I don't have to work, but since I've worked all my life, it's hard for me to do nothing, since I left Nursing (Labor and delivery) I've tired teaching at the community college, and that got to be too much for me. I've been selling Kay Cosmetics since I left too, and I love that, and wanted to go up the ranks and become a Director, and after 7 years, I realized I just don't have the energy it takes to do that either, I do some home health for a small company, I do there certifications for there home care providers, and some teaching, it's less then a 1/4 time job. My husband just started a new business and I try to help him out too. I guess what I'm saying

is, it's just plain hard to know what to do, try and work again? or try for Disability again? I still keep thinking I should be working more, try the hospital again, then look for what jobs they have, as there's always nursing positions posted, then see 12 hour shift, there's NO Way I could do that, so I let it go for awhile.What ever you decide will be the right thing for you, I will keep you in my prayers, and hope God will guide you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here.

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