Author Topic: I need some guidance  (Read 6741 times)

Gerty

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Re: I need some guidance
« Reply #15 on: July 22, 2010, 03:23:05 PM »
Awww navydad it is so frustrating not getting answears from Dr's and stuff and when its your partner makes it so much harder cause they don't understand. I'm in a new relationship with a wonderful man in every way he cooks cleans make sure I have everything I want need. But seems to let me down when I'm not well cause he just don't understand he says he knows he don't have what I have but he just does not understand Ive given him info and sent him links he reads it a little bit but still don't seem to get it.. Big gentle hugs

Bopeep

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Re: I need some guidance
« Reply #16 on: July 22, 2010, 04:49:04 PM »
I feel so sorry for you navy dad,
about June last year my Dr put me on a antidepresent first time ever, not only did it help with the drepression but it helped me sleep as well.

I would of never taken antidepresents, actually I refused to admit i was depressed yet would cry for any reason.
Anyway in Oct last year I developed a strange itchy rash on the upper torso.
After several tests all negitive my Dr decided to take me off all medication as he thought it could be a cocktail buildup of pills in the system. Prednisone was a slow withdrawal but eventually i was off all medication. The consequenses of that is I have been in a chair eversince, some days in so much pain I cant bear to even use my hands foe typing. I have the swollen feet and hands, the burning, always the burning,

I have now just started a new medication which is scary to me as its mainly used for organ transplant patients.
but after nearly a year of not being able to move much Im pretty much ready to try anything.

We are heading up to lambing time on our life style block, my husband is a big man and has huge hands which cant help the ewes  when they are having trouble lambing, I am dreading lambing this year which is a shame because those beautiful little baby lambs with there cute faces and wriggly waggy tails just make your heart miss a beat.
how on earth am I going to be able to help birth a lamb or three if i can hardly hold a pencil.
 Anyway navy dad I sure do feel for you I dont recommend going cold turkey in stopping meds and it may not even be the thing you need to do
I recommend the antidepresants they really do help with the pain and the hopelessness of this bloody awful desease we have all got.
If you like Ill post you all a picyure of our first lamb thats born   8)




puccini914

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Re: I need some guidance
« Reply #17 on: July 22, 2010, 05:37:00 PM »
My Doc triedme on several anti D's tohelp with pain  and I must sa that none really helped much, but one di help some with anexiety and contributed to the anti-migraine equation.  That was Trazadone, it also helps some people sleep.  It is so frustrating when people don't understand.  I take 4 Lotab 10's a day and still have joint pain, I'm allergic to all NSAID's and Ultram as well.  I haven't come up with any good explainations about the pain, but when itcomes to fatigue, I tell people, yo know how you feel the first day of flu?  So exhuasted?  That's your immune system on overdrive.  That's how I feel about everyday, unless it's it's a a really good day and those don't come vey often.  I wish the best of luck, please remeber you will have to go through a lot of trial and erro to find the right meds to feel better, but it is worth it to keep trying.  I had 27 striaght days of feeling fantastc in May after 3 1/2 months on MTX, then I hit a big flare ad a systemic infectin of Strep.  I'm slowly fighting my way back, but at least I know I was there once and with the right med I can get there again.  Take care of your self and try to heal.


rnathans

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Re: I need some guidance
« Reply #18 on: July 22, 2010, 07:27:38 PM »
I am going to continue where Irish left off and throw in a little more tough love because I don't want you to give up and I want you to get some relief. Although I totally understand your frustration and anger at physicians BUT you have to let it go. It prevents you from dealing effectively with them. New doctors have to collect all that information if there is any chance that they are going to be able to help you. And most of them do review the information. Doctors who have seen you for awhile may not know what to do for you-not because they don't want to help or because they are clueless but because autoimmune diseases and neuropathies can be very difficult to treat. It doesn't mean they don't hear how you are suffering or that they don't want to help. Are there some bad docs out there. Sure. But it is unfair to lump them all together.

I was a medical social worker for many years before I had to stop working. My experience has been that the caring doctors far outweigh the uncaring ones. But they don't have all the answers. And when they can't help it frustrates them too. ( not the same as for the patient of course). Please cut them some slack so you can let them help you.

One other question- is your neurologist a generalist or does he specialize in neuropathy? If you haven't seen a sub-specialist I think it is time to do so. I see a great one in Hershey but I hesitate to recommend him if you are not ready to give him a fair chance, answer his questions and go through any testing he would suggest.

I am pulling for you.

PrincessLeah

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Re: I need some guidance
« Reply #19 on: July 22, 2010, 10:36:09 PM »
I know this may be a truly silly suggestion and may in fact be bad for someone with neuropathy--

Have you ever tried non-traditional or Chinese medicine?  The only reason I ask is my GP actually didn't have a problem with my trying acupuncture.  He said a lot of his patients have had success when they haven't had success with drugs.

I'm not sure I buy into a lot of Chinese medicine or Eastern philosophy, but my friend (who is a massage therapist) recommended one to me (he's actually a chiropractor and an acupunturist.)

She said it's very strange, but your nerves are not always logically connected together, so a lot of times if you have pain, they'll work on you systemically.  I've heard from a lot of people that acupunture set them right when pain meds wouldn't.

I'm willing to at least give it a shot.  As long as it doesn't hurt anything, and my GP says it won't, as long as it's an actual doctor and not some weirdo working out of a van.  It may or may not be good for you.

Not trying to proselytize here -- but hey, if you give it a shot, it may at least get you to the point where you can move around with less pain.  If you've already tried it, then never mind. 

My friend said that the good thing about them is their bread and butter is reducing pain, and since they view you systemically, they'll listen to all of your symptoms and plan accordingly.

{:

gurs

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Re: I need some guidance
« Reply #20 on: July 23, 2010, 04:46:14 AM »
You need to contact  The Rarediseases.org  website..they might be able to figure this out.  You might have sjogrens, but you also might have something else going
on with it to?

Has your ENT ever went in and checked your sinsues for infections or yeast? my ENT says the only way to get rid of yeast in the sinuses is via surgery?
Try a round of diflucan for a month to see how you feel if its yeast?

Try an antibiotic for a month or two if its infectious to see if it helps?

Im with you sweetie..stuck in bed most of the day feeling like someone just injected me with loads of poision. Its a nightmare to say the least. I feel for you!!

hang in there..

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

navydad

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Re: I need some guidance
« Reply #21 on: July 23, 2010, 09:14:38 AM »
I am going to continue where Irish left off and throw in a little more tough love because I don't want you to give up and I want you to get some relief. Although I totally understand your frustration and anger at physicians BUT you have to let it go. It prevents you from dealing effectively with them. New doctors have to collect all that information if there is any chance that they are going to be able to help you. And most of them do review the information. Doctors who have seen you for awhile may not know what to do for you-not because they don't want to help or because they are clueless but because autoimmune diseases and neuropathies can be very difficult to treat. It doesn't mean they don't hear how you are suffering or that they don't want to help. Are there some bad docs out there. Sure. But it is unfair to lump them all together.

I was a medical social worker for many years before I had to stop working. My experience has been that the caring doctors far outweigh the uncaring ones. But they don't have all the answers. And when they can't help it frustrates them too. ( not the same as for the patient of course). Please cut them some slack so you can let them help you.

One other question- is your neurologist a generalist or does he specialize in neuropathy? If you haven't seen a sub-specialist I think it is time to do so. I see a great one in Hershey but I hesitate to recommend him if you are not ready to give him a fair chance, answer his questions and go through any testing he would suggest.

I am pulling for you.
If they dont kow what to do,, why do they continue to prescribe stuff that poisons us,, if you dont know what to do,, get out that rolodex of numbers and find someone that does,, No,, I dont hate the whole profession,, I hate the arrogant ones who dont let you talk,, and this after waiting weeks to see them,, I hate the ones that listen to you and then go completely in the opposite directions as if they didnt hear a word you said,, they sit tehre like a dam bobblehead,, nodding there heads,, but not really listening, I;ve seen my charts,, I have seen the entry of somotoform disorder,, I have seen the entrys of depression and anxiety,, I know dam well once they see that entry your done for,, ya I;ll continue to fight,, but it wont be with the enthusiem I had before,, they have worse me down,,
  When my Neuro called me and told me he has a good idea what was wrong,, after the trip to Mayo,, I thought this is it,, my sister took me and for a full hour all I heard was how amazed Ihad to be at going to Mayo,, he compared it to a anthill,, everyone scurrying around,, things getting done,, and the whole time I kept saying,, Doc,, my arms are getting worse,,, I must have said it 5 times,,, my sister told him also,, but he just kept taking about Mayo and the doctors he knew there,,
  The neuro I saw out there,,, now she was nice, but I knew I was ascrewed when she told me that the punch biopsy they took in Pittsburgh that found teh SFN was probably taken from a allready scarred area,, possibly from a previous injury,, WHAT,, ?????,,, so I knew allready I just drove 900 miles for pretty much nothing,,, Mayo was good,, but I came away with no answers and a worsening condition,,

  Ya i;ll go to a pain clinic,, I guess I;ll have to find a way to get there,,, and I did call the local hospital for pain clinics in the area,, the girl gave me three numbers,, one was a number for a poditrist,, (i;m not lying),,, one was disconnected,, and the other was for a group of anestheologist,, ,, so you see my being cynical,,,
 so I really have no pain clinic yet,, I have no advocate,,, yes Irish,, my family really wants nothing to do with me anymore,, my wife is happy to go to work to get away from me,, my kids have moved out,, they call a few times a week,, they want nothing to do with dad,, they dont know what to do either,,, so this is what I get for 30 years of taking care of everyone of there needs,, when mom was to busy doing other things to go to ball games,, I watched the house almost get taken from us,, I stepped in and saved that,, and she walked away thinking,, well My husband has everything under control,, so no sesne me worrying about anything,, he;ll fix it,, alwyas has,,, I never let themm grow up,, andnow I am aying for it,,, thanks all

anita

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Re: I need some guidance
« Reply #22 on: July 23, 2010, 09:44:13 AM »
Navydad,

Give that group of anesthesiologists a call.  That's the pain clinic.  They are the masters of pain relief!!!  Anesthesiologists can do nerve blocks and other things to help you.  That's exactly who you need.  Give it a try.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

navydad

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Re: I need some guidance
« Reply #23 on: July 23, 2010, 11:22:10 AM »
I did call them,, they didnt have a clue what I was talking about,, they only followed up on post surgical patients,, try to remember that I live in a area where your not allowed to be sick,, and you just suck it up

rnathans

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Re: I need some guidance
« Reply #24 on: July 23, 2010, 11:36:18 AM »
Well I would be pretty ticked off at your neuro too going on and on about Mayo instead of addressing your needs. That is not empathic or helpful. It sounds like part of the problem may be that you live in an area that lacks top notch doctors. You are in a rural area right?

As to why do the doctors put toxins into our system if they don't help- they do it because sometimes these toxins do help and are the only thing they have left to try. I was on heavy duty infusions of cytoxan (the name says it all) for 2 one year periods when my gastroparesis was really bad. I was lucky that it helped me but there was no guarantee that it would.

If this neuro has run out of things to try it may be time to see another one.

Hang n there.

navydad

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Re: I need some guidance
« Reply #25 on: July 23, 2010, 01:23:48 PM »
At first I was being treated in a rural seting,, without finding anything, they fell back to the Alamo Dx. Its all in your head,, then was sent to the Cutting edge Medical capital of the universe according to there commercials,, UPMC in pittsburgh,, saw a few helpfull sympathetic doctors,, but they released me to other doctors that I found out later had a vested interest in the referrals,,, it wasent long before I was being given poisons,, un needed surgerys that I grasped at for relief, No,, I am not treating locally anymore, in fact the Neuro I am seeing is on the board of directors of some very well known boards that I wont name here,,but some of his articles have referred to SS,,

irish

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Re: I need some guidance
« Reply #26 on: July 23, 2010, 02:25:33 PM »
navydad, There is no getting around it---chronic illness can destroy families. It is something that happens and many times there is nothing that can be done. Life is not fair----never has been and never will be. The bottom line is that you need to find relief.

I have somatoform diagnosis on my chart plus I have psychiatric disorder that was added also and expanded upon making me look really unhinged--- and it just goes on and on. I have been insulted by the supposedly best of them and even with my hubby in the room with me. I wrote an 8 page letter to one of the bigger institutions explaining to them all the stupid things that they had charted.---things like "see a psychiatrist every month" which is not true. I told them I saw a psych every 4 months or so for a med recheck. Yeah, they don't listen---at least most of them don't. That is why I spent about10 years going to the doctor and it would be about 6-8 times a month or so. Sometimes less, but always just a constant battle to look for help. I worked part time and my employer asked me if I had any money left at the end of the month after doctoring. I told him "not much" and I told him I would not quit until I found out what was wrong.

All the people I worked with knew I was sick and could see how ill I was but I am a tough old broad and kept on going. Hubby and I put on so many medical miles every year that our tax man couldn't believe it. He had never seen anything like it. I told him desperation does that to you. Sort of ruined our old age financially and socially that is for sure.

I have been hanging my head in the bathroom sink for 10 years getting rid of infections and ruptured abscesses, etc. Mucus issues are daily and constant for me. We should have taken pictures but didn't think of it then. I knew that I had an abscess in the back of my throat cause I would rattle when I breathed and I could feel the swelling. I was to ER several times at important hospitals. I didn't look sick, I looked too healthy, nothing wrong with her. I finally got out an old small blade jacknife of hubby's and sterilized it as best be with betadine, etc. I got the cotton gauze squares ready and the inside of a ball point pen. This was my little packet of tools that I was going to use to perform a tracheotomy on myself if I got so bad that I couldn't breathe.

This sounds far fetched, but I am a RN and I got on line and reviewed the anatomy and landmarks for this procedure. I told my hubby that we lived so far from town that I would be dead or have brain damage by the time the ambulance got here. I was so mad about the whole thing and I thought there is no way I was going to die by suffocating. I knew it was a high possibility and I was mentally prepared to do whatever it took to save my life.

Ended up that I did rupture a big abscess of orange drainage and I didn't have to do anything---but I would have done the trach on myself had I needed to as I was psyched for it. I told a couple of docs that I was not going to die because someone didn't believe what I told them. I also told them that if a missionary can perform an appendectomy on themself in the jungle then I could do the %#&* trach.

Yeah, life can suck. I called one clinic many years ago for a referral to an ENT. This doc (who I knew and worked with) refused to refer me. I told the nurse to tell him to "stick it where the sun doesn't shine". She was just horrified that I had said that. I got on the phone to the cities and called one of the big hospitals and got the number of an ENT and saw him in 2 days. Guess what, I was right, I did have issues with that ear that the other doc had treated!!! It was full of pus and I was losing my hearing. I stopped at my clinic on the way home and told the nurse to tell him that my ear was better now since the ear drum had been lanced, infection suctioned out and tube inserted in my ear drum..

I had to drive 80 miles one way to get treatment cause my dumb egotistical doc wouldn't listen to me. Now, I could go on and on cause my story, and everyone elses on this site, is never ending. It is fraught with stuff that shouldn't happen but does. I have been instilling antibiotics in my nose every day for 5 months now and just saw ENT this week. He did cultures that were so deep into my nasophaynx that I thought they would hit bottom and it hurt. Cultured both sides and did a bunch of them to see if they can find out what is growing now. Always something, never ends, but it is my life and I am left with it. I am up til 3-4AM every night again lately because of my mucus issues. It is old, I am sick of it. Will it ever change---I seriously doubt it. It will kill me plus I worry about spreading stuff to my grandkids. But I can't change it and must make the best of it.

So navydad, get over it and get out there and do what you need to do. We can whine all we want but it ain't gonna do anything but make us miserable. Attitude is the only thing that separates the men from the boys in everything we do. Find yourself a different ENT if you aren't getting what you think you need. Sounds like you could have something going on there that needs to be treated. I kept telling you that if you had some abnormal white blood counts and a diagnosis of immune deficiency to get this addressed. If you have immune issues you will always have issues with your sinuses if you don't get IVIG. IVIG is one of the prime treatments for some of the immune deficienced. I know that you had a couple sessions of the IVIG and it needs to be done on a timely basis to get things under control. It takes time and most of us have nothing but time now.There is not an overnight cure and there never will be.

If your neurologist isn't helping you then find another one. It doesn't take long to see the writing on the wall with some of these guys. Your complaints never change and never will if you don't take the bull by the horn. First off get an antidepressant and get your body and mind on the right track. Seek out people that can help you. Find some spiritual support and don't overload your family with all of this. They cannot fix it.

My hubby and I are both ill. We each wander around in our own little world at times. We both admit that we get sick of being sick ourselves and having to live with someone who is sick. We both know that the other person has to totally remove themselves mentally from the health issues and do different things---go different ways, etc. We can't stand the burden of all the medical issues at our house and have to just sort of zone out at times to keep our sanity. The relatives can develop horrible guilt because they can't help their spouse. Some leave the marriage, some drink, some quit sommunnicating. Each marriage has to learn how to deal with these issues. If we don't have the answers we have to find someone to help us
.
So just get on with it and find the help you need and we will all be here for you. Irish ;D
« Last Edit: July 23, 2010, 10:06:58 PM by irish »

gurs

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Re: I need some guidance
« Reply #27 on: July 24, 2010, 04:47:56 AM »
You cant blame the doctors in a way....what else can they do? .they need more research and funding for these autoimmune diseases. Just because some are not fatal, they continue
 not to see how debilitating they are, just not with pain, but with everything else. I would be happy just to have some joint pain etc, but like alot of you, I suffer horribly.
Alot of MS symptoms. Feel toxic and just sick all the time and cant make it out of bed much anymore. Now I have major hormone problems and losing all my hair all over and look like an 80 year old woman and im only 46? lovely!!!!
I cant take any pain meds because they make my anxiety worse, or zone me out totally..and, they also cause me to be more dry if possible..now what?

Hang in there ok...dont give up
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

Carolina

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Re: I need some guidance
« Reply #28 on: July 24, 2010, 06:09:04 AM »

Dearest Navydad,

We all need some guidance, but I'm not sure there's much to be had.  This is sort of a "do-it-yourself" project, like life itself.

I'm at the beginning of where you are, Navydad, and only have a slight idea of what's ahead.  Your posts give me some idea, tho'.

Right now Cymbalta, Oxcarbezapine and Aleve give me some relief, and of COURSE, I'm just starting.  

Today, for example,  is the first day my arms ached as well as having pins and needles and tingling and burning.   And I also notice them during the day now, not just at night, sigh.

I too have terrible sinus drainage, getting worse now, and of COURSE a constant sinus headache.  It was my ORTHOPEDIST who said, "oh yeah, that's probably from your Sjogren's!"  Go figure.  Of course I immediately realized he was right.

I pay very close attention to what you're going through, Navydad.   You know you have my concern and caring, you have that from all of us, I think.

I wish I could make things better.  What you need, and don't have, is a connection to a caring and committed professional that you trust and feel comfortable with.  Not because she or he will make things all right, but because you will feel treated and respected as an entire person and as yourself as an individual.

We all need that.   I'm still looking for that, but I"m not so sure I will find it.  

Here, in this forum, we do get some of what we need from each other, I think.

Keep keeping us posted!

Kisses

Carolina












« Last Edit: July 24, 2010, 09:05:11 AM by Carolina »
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Sarah

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Re: I need some guidance
« Reply #29 on: July 24, 2010, 07:19:07 AM »
I am so sorry for all your pain and heartache.  I once had pain so bad all I did was cry.  No family, no friends, feeling so alone in the world.  Going to a lot of doctors only added to the feelings of dispair.  I went to Mayo about my pain and they were of no help, but a male nurse there said "Your mind is a strong instrument in healing and I have seen many people overcome great obstacles."  That stuck with me and I decided to use my mind as much as possible.  I read books on pain and encouragement and each one had a little tidbit to help.  I repeated the phrase over and over "Every day in every way, I am getting better and better."  This came from a book called "The Will To Live."  I also memorized the phrases "The light of God surrounds me, the love of God enfolds me, wherever I am, God is there."  These things calmed my mind.  I tried exercise - a very little at a time - sitting in a chair - raising my arms, using a stretch band (you can buy at K-mart or Walmart), then I would walk in the house just a few feet at a time and increase it daily.  I would put calming music on and use tapes that were very calming.  I kept thinking what the male nurse told me - your mind is very powerful.  Little by little I started to feel a bit better.  I watched funny CDs and started to laugh.  I realized I had to change my attitude and mind as certainly doctors did not do it.  I changed my diet - putting only good food into my body - fruits, vegetables.  All this I had to do myself and it was not easy to get up and do these things.  I started to view my body as a temple and that God wanted me to heal.  It took years.  I can't tell you how much dispair I was in but I wanted to regain the will to live and be happy again.  I still use these methods whenever something happens or pain starts up again.  I was told I had permanent nerve damage in both my insides (from terrible surgery) and my jaw (again surgery gone awry).  Good luck to you, Navydad, and we all send you our love.  I have my dog who loves me unconditionally, and I have  God who loves me.  I list the good things in my life.  I also recommend reading 12 step programs, even though you might not drink or be with someone who drinks, the information in the 12 step is so calming to my mind.  It helps me to detach from things that upset me.  Love, Sarah
« Last Edit: July 24, 2010, 07:22:57 AM by Sarah »