Author Topic: i am giving up  (Read 4658 times)

saranski

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i am giving up
« on: January 27, 2010, 02:23:54 PM »
hey,

called primary and now he says that if the rheumy won't give a positive diagnosis, there is nothing more that he can do.  call back in a month and let him know if the symptoms are any better or worse.  I explained to his medical assistant, who is awesome, that they haven't changed in 10 years, why would they change in a month????  Rheumy said he has never heard of sjogren's causing weakness, numbing, tingling, etc and my primary is taking that at face value without even seeing me to discuss other options!!!! I am sick to death of this.  Do i need to be dying for someone to believe me??? My biopsy showed chronic inflammation, but NOT enough to label it sjogrens.  Well then, what the heck is causing the chronic inflammation, will power!!???? Am i wrong, if there is chronic inflammation and i have symptoms shouldn't someone be looking for a cause????
sarah

Joe S.

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Re: i am giving up
« Reply #1 on: January 27, 2010, 05:00:12 PM »
saranski, bring an advocate with you to the doctors office. Read the "Spoon Theory" if you have not. Become your own General in this war against what you have. Do your research. Try what has helped others with medical approval. Do not sit still for the "I don't know, ask some one else" crap. Win your war!
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
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lynnmarie219

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Re: i am giving up
« Reply #2 on: January 27, 2010, 05:45:44 PM »
Saranski...

If you have chronic inflammation and painful symptoms then you should be receiving treamtent to help with some of them. Have you tried to get a second opinion? I think I would be looking for another rheumy to get answers...OR would your rheumy or GP be willing to refer you to a neuro?


Just don't give up....keep pushing for answers....what you're feeling is not normal and someone needs to listen to you and  treat you as needed.   

inga

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Re: i am giving up
« Reply #3 on: January 27, 2010, 06:28:48 PM »
I see by your meds you are on Lasix (furosemide).  I don't see any mention of why they have you on a diuretic.  Diuretics like Lasix dry a person out.  So does Requip, which I assume you are on for RLS?  Just a thought, maybe you can talk to your doc about the meds, to see if that helps.

saranski

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Re: i am giving up
« Reply #4 on: January 27, 2010, 06:55:47 PM »
hi,
i rarely take the lasix, only when i am really swollen, due to heart issues, maybe once a month if that.  Requip i could not do without, i would never get any sleep.  I can't even take a nap anymore without taking at least a 1 mg tab before i lay down.  My sisters want me to try homeopathic stuff, a friend of the family was diagnosed with RA several years ago and they had her on all sorts of meds.  they didn't help much.  she was desparate and went to see a homeopathic chiropractor.  she prescribed a bunch of different things and it took about 6 months.  That was 5 years ago and she doesn't have ANY symptoms of RA at all.  Ever hear of anything like that?

Patze

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Re: i am giving up
« Reply #5 on: January 27, 2010, 07:01:11 PM »
Hi Sara,

I understand the frustration you're feeling, I've gone through several doctors trying to find the right combo of doctors (still working on that).  Have you tried a major medical center or a teaching hospital by chance?  I know several members that swear by them, and I know that there are some cutting edge doctors associated with them.

Don't let it get you down, okay?  

Hang in there. and take care of yourself -

Patze
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Marmotte

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Re: i am giving up
« Reply #6 on: January 27, 2010, 10:52:53 PM »
hey,
Rheumy said he has never heard of sjogren's causing weakness, numbing, tingling, etc and my primary is taking that at face value without even seeing me to discuss other options!!!! sarah

I have weakness, numbness, and tingling, as well, mostly in my feet and legs, but also in the rest of my body, especially the head. I've been dxd with SjS, but the Rheumy doesn't feel like these other issues are from SjS. I am probably going to see Dr. Birnbaum at Johns Hopkins; I'm hoping to at least find out what is going on.

I'm also thinking of doing something drastic--like a juice fast or something--to see what happens. I also feel a bit desperate.

Hang in there! At least we can feel something!

Janet

kim31072

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Re: i am giving up
« Reply #7 on: January 28, 2010, 04:03:56 AM »
Follow up w/your GP (after the required 1 month wait  ???)and if anything related to the issues you have been having pop up between now and then anything(more pain,swelling,neuropathy make an appt and go in to see him.then still keep the one month appt.Take the test results with you in case they werent faxed to him and ask NOW WHAT?ask for a referral to another rheumy even if you have to go out of county..if you dont require a referral from a GP(my ins doesnt but alot of rheumy offices require it to get in)then ask for one as it might be a wait.

Fire the old one..he kinda sounds like an idiot ;D..and someone who is in a round about way saying "well you have no alternative BUT me (unless you wanna drive)cause I'm the only one here.Yeah,I'd drive..right away from his practice.

Good Luck

Heather

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Re: i am giving up
« Reply #8 on: January 28, 2010, 05:50:18 AM »
Oh Sarah,
I'm feeling sorry for you. I'm a little bit in the same position. My bloodwork and biopsy came back negative and my GP says: Sj?grens must be out of your head.
I was confused. I went to the GI where I went first, she's a good listener. Now she send me to another hospital where they do research for chronical fatigue syndrome. The doctors will look at it first if there is another reason for the complaints. I hope they can do something for me.
I know it's not easy to ask for a second opinion or to find a doctor who will listen to you.
Good luck!

inga

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Re: i am giving up
« Reply #9 on: January 28, 2010, 08:09:20 AM »
Requip (ropinerole) is an antidopaminergic, used for movement disorders, not for sleep.  Hmm.  It is meant to be used on a regular basis.  I sometimes wonder what the docs are thinking with these antiparkinsonian meds.  For example, Mirapex (pramipexole) for RLS, is to be given at LOW doses, and yet I see people with RLS or fibro being given doses for Parkinson's.  No wonder they feel awful.  Those drugs make you feel like yuk.  I know, I am on it, Mirapex that is...very low dose. 0.25mg.  That is enough to make me feel bad.

Well, I don't know what to say, other than there may be another issue.  Have you been worked up for dysautonomia?

saranski

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Re: i am giving up
« Reply #10 on: January 28, 2010, 08:51:56 AM »
Hi,
I have already been diagnosed with autonomic dysfunction.  I see an ENT this afternoon for a laryngoscope exam because of the chronic laryngitis.  I am already looking for a new rheumy, but hubby will have to make the appt for me, as no-one can understand me!!! ::)  Maybe he will have some answers for me.  Requip i am up to 2-3 mg per night because of RLS which is only getting worse, and i know it's anticholinergic which dries everything up, it's like robbing Peter to pay Paul, it is a vicious circle. :(
sarah

Joe S.

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Re: i am giving up
« Reply #11 on: January 28, 2010, 02:11:49 PM »
Try magnesium for your RLS it helped me.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Carolina

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Re: i am giving up
« Reply #12 on: January 29, 2010, 07:41:53 AM »
I am new and quite dumbfounded and overjoyed by this group.   I coped OK with pSS (primary Sjogren's Syndrome) and the IC (Interstitial Cystitis), but the CNS stuff is putting me over the top.

By the way, I have never had positive blood tests for Sjogren's, but my rhuematologist had no problem knowing I have Sjogren's.   I take Salagen, use Restasis drops, and Nature's Tears eye spray at night.  I get up to pee, get a drink, and spray my eyes three times a night!.  

The Interstitial Cystitis was diagnosed with a cystocopy of my bladder.   50% of the people with Sjogren's develop IC.  There isn't any really reasonable treatment for it. One drug that 'may work' I became very allergic to within weeks.  It's called Elmiron.

Any doctor that doesn't recognize the gazillion symptoms of pSS CNS, especially a neurologist, doesn't know his business.  Period, end of discussion.  

I look forward to reading this forum, and posting, too.

PS  How do I put in that little list of syndromes and meds?  That's so interesting.
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-

saranski

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Re: i am giving up
« Reply #13 on: January 29, 2010, 07:50:23 AM »
hi,
took me a while to figure out how to add stuff to.  go to profile and add to signature line.