Crap is what it is!

[navydad]

Good luck Navydad. Most pain clinics are ripoffs for the insurance companies to write off patients.

I agree Joe,, I see pain clinics as the last stop so that Insurance companys can just stop treating you,, even if it is the worng treatement,,,

[RachelsMom]

Wow, this is a heavy yet important thread. I can't imagine how any of you are feeling since I don't have an AI disease. I can however understand the emotional yo-yo. My 16 yr. old daughter is currently undergoing testing for SJS and I get conflicting emotions about it in concern for her. She's so young and so active and it breaks my heart when I see her sitting on the couch chewing Aleve while the heating pad tries to offer her back some relief and I know SHE'S worried if she will be able to help her team win at their next swim meet or softball game. Her attitude seems to be pretty good right now. She's a stubborn young lady and she tries not to let her pain stop her from being 'normal' but me being mom worry about how her illness is going to affect her when she goes to college next year and how it's going to change her life as she gets older.

 I think it's perfectly normal to be angry, sad, frustrated and feel helpless with any kind of life altering illness, most certainly after being newly diagnosed or during especially rough periods. Add in the economic turmoils going on with our country that many aren't accustomed to and that's a fantastic recipe for stress. I have OA and Spondylosis CDDD and had a Cervical Spine Fusion a year ago...I get frustrated when I have no energy to do what I need to do, when my muscles start to spasm after doing something as simple as mopping my floor or scrubbing my shower and therefore put me down for the day. Or when I wash my vehicle and after only 5 min. feeling the burning pain in my arms from them losing muscle strength by not being diagnosed sooner. That makes me mad and I feel really useless because I can't do what I used to be able to do a few short years ago. But, I grit my teeth and move along with life and try to remind myself that everything happens for a reason and illness knows no boundaries!

 :0) *hugs* to you all!
Monica

[navydad]

I hope your daughter test negative for all of this crap

[inga]

Navydad, have they done the hereditary neuropathy tests on you?  Also Rob, it may be worth a try to see if your issues are in anyway a genetically caused situation.

I do understand your feelings about pain clinics....I am not fond of them either.  My last appt. I left after sitting 3 hours in the waiting room!

Yes, it is frustrating NOT to have a 'disease' when you NEED disability payments.  This is really a dilemma.  I think that things should be more based on FUNCTION not on the name of the disease.  The legal system which doles out disability is old and does not work.  This is one reason, I haven't filed....and also that I timed out....I haven't worked for 10 quarters there by losing the ability to file. 

Anyway, I was thinking they could put in a morphine pump?  I think a pain clinic has to do that.

I think anger is part of grieving....it is a process and we all go thru it to one extent or another....when we get stuck, we need a counselor or some person, maybe a minister or professional to help us get beyond this.   If we get stuck in anger, we get bitter and that hurts no one but us. 

[RachelsMom]

Thank you Navydad! Whatever diagnosis they find for her, I hope it's soon so we can work on making her feel better and being pro-active by knowing what to possibly expect.

I too have visited the pain clinics and am not all that sold on them. I have a love/hate relationship with pain pills...I don't like to take them, but they sure did help when my pain was at it's worst. I don't like feeling 'high' all the time not to mention the havoc the side effects wreaked on my poor body.  I decided to have my fusion done when the cortizone shots in my spine were no longer helping for more than a month and my Ortho Dr. told me that those injections could give out far worse complications in the long run as opposed to having the surgery that I did at the stage I was in.

FWIW, I have a friend who had constant pain for years and was nearly debilitated by it when he was recommended to a local Acupuncturist. He SWEARS that the treatments changed his life. I've not tried it, but I've heard a lot of positive results from the treatment and I plan to give it a try next time my spine gives me grief.

Please forgive me if I've spoken out of line, I mean no disrespect by posting my comments.  I realize AI diseases don't have the option of being surgically treated to 'fix it' and take away the pain you are living with, I'm just adding in my 2 cents in regards to pain centers.

[Joe S.]

Monica,
As your daughter will experience, she will get tired of people telling her of cures. Personally I believe the Doctors are using the wrong "Model" for AI diseases. Until that change is made, there will be no cure. Some of the research that I have been reading is suggesting gene 6 and gene 7 as points of connection for the variety of L-Bacteria that causes these diseases. One of these genes is used for serotonin replication which may connect to the loss of sleep and low serotonin levels. As you will understand... this is just "my" theory.

Currently the best we can hope for with any AI disease is management that slows its progression.

If you have not read "spoon theory" please read it. It could help you understand what your daughter is going through.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

[navydad]

Navydad, have they done the hereditary neuropathy tests on you?  Also Rob, it may be worth a try to see if your issues are in anyway a genetically caused situation.

I do understand your feelings about pain clinics....I am not fond of them either.  My last appt. I left after sitting 3 hours in the waiting room!

Yes, it is frustrating NOT to have a 'disease' when you NEED disability payments.  This is really a dilemma.  I think that things should be more based on FUNCTION not on the name of the disease.  The legal system which doles out disability is old and does not work.  This is one reason, I haven't filed....and also that I timed out....I haven't worked for 10 quarters there by losing the ability to file. 

Anyway, I was thinking they could put in a morphine pump?  I think a pain clinic has to do that.

I think anger is part of grieving....it is a process and we all go thru it to one extent or another....when we get stuck, we need a counselor or some person, maybe a minister or professional to help us get beyond this.   If we get stuck in anger, we get bitter and that hurts no one but us. 

I dont know if they have or not Inga,, (hereditary),,, as far as I know from my family history,, I dont believe any of my relatives have this type of neuropathy or any neuropathy,, now they may have and didnt know what it was,, My Aunt is 88 today,, her sister,, (my mom),, is 82,,, but I guess its possible a handed down neuropathy might skip a generation,, but I dont know that as fact,, I do kow there are some infectious neuropathys,,, some of which I have had or still have,, in addition to the pain cllinic I see a infectious disease doctor soon,, shes nice and I think we can get on the same page to see if its a infectious thing doing this,,, immunology might be next,, one I was seeing was good at treating hay fever,, not much good for anything else

[puccini914]

I am seriously starting to wonder if all this neuorpathy is somehow linked to some form of MS.  You know how all these AI diseases like to hitch a ride with sjogrens, many of get little bits of Lupus or RA here and there but never enough to get a full diagnosis of anything.  Just a little bit of something poking through.  I get a malar rash and hives all the time.  I have severe sunsensitivity that can send me into a full blown flare, but I test negative for anti-dsdna, but totally positive for sjogrens.  What do you think?  Could all this unknown neouro symptoms, the migraines, the SFN be some kind of MS overlap like we've seen with other AI diseases?

[gphx]

Inga, I've done the same thing. I took a few years off and lived off of savings because I was messed up and now my disability has also 'timed out'. It didn't seem like a bad idea at the time because doctors insisted there was nothing wrong with me. I worked for 25 years and won't be eligible because of not enough credits falling in the most recent period. The system really does need to be changed.

As an example I read the other day stage 4 lung cancer basically guarantees one will be eligible for Medicare but there is a mandatory waiting period of two years. Unfortunately the mean survival time for those diagnosed with stage 4 cancer is one year.

I guess that's what the government means when they say 'cost savings'. In many cases they withhold benefits by definition and procedure until after the person is dead. Then after the person is dead they'll come in and take 40% of the value of their estate in taxes assuming anything is left. Good grief.

Rather than expanding existing programs it'd been great if they'd reformed them because otherwise it's just more of the same.

[gphx]

Why apologize for being a breath of fresh air? One can't ask more than that someone have compassion and be a seeker of truth.
My best to your daughter. I hope things work out as well as possible for her.

Please forgive me if I've spoken out of line, I mean no disrespect by posting my comments.  I realize AI diseases don't have the option of being surgically treated to 'fix it' and take away the pain you are living with, I'm just adding in my 2 cents in regards to pain centers.

[irish]

I was waylaid for a couple days with hyperthyroid due to overmedication so just got back to this thread today. Lots of heavy reading.

I did mention on my post that I was not blaming anyone for anger and I would assume that would include venting because why else would one be on a site like this except to exchange information and vent.

What I was questioning was the fact that this has been such a hot summer and people have been unusally upset in their posts. Maybe there are more people at the same stage of their acceptance of AID who are posting now, I don't know. I do know that when you add in pain, heat, financial issues and the political climate out there today we are all prone to be on edge in one way or another.

If you do stop and think of the past generations who suffered from disease you will find that they did not complain that much. Granted, they may have died earlier because of their disease and not had the chance to complain. There is nothing wrong with being angry and upset and I don't expect that there will be any change in the venting done here. I was just raising an issue and apparently I really poked a hole in the proverbial hornets nest.

Don't stop complaining or being angry but I guess if any of us has any prolonged anger we should talk to a professional about it and I think this has been addressed by others on this site at some time or another. Prolonged anger can end making us physically ill. As if we need another thing to deal with. Irish

[gphx]

Hi Puccini,

In my case, because of my neuro symptoms, MS was my first thought. I went to see an MS neuro. All the scans, spinal taps, etc. came back negative for MS but did show high ACE and CRP, two markers that often point to sarcoidosis among other things.

I had a lip biopsy done for SS. The report showed all the criteria of SS but apparently not in sufficient density of clusters for dx. I smoke and smoking is a known immunosuppressant such that it has been observed to cause false negatives on biopsies and various serum marker tests in a way similar to treatment with Prednisone.

Doctors said though I have serum results pointing towards neurosarcoidosis, they cannot find any granulomas so they can't dx it. About all they could do is start cutting randomly and hope they find something.

Do I have ss and/or sarc? One or a combination seems likely. Whatever the basis of the neuro symptoms I've had sicca issues for 27 years.

MS? Possibly, especially if a lesion isn't large enough yet to be seen on a scan but is in a critical area such as the cervical spine which can impact just about everything.

Unfortunately we're in 'wait and see' mode which means basically they won't do anything until you're so screwed up it's obvious to anyone and too late.

I think the crux of research in all these diseases should be blood tests for them. If they can't identify them in the first place no other research will do any good.

Not trying to be negative just practical. I remain hopeful for everyone.

Cheers,
Darrin

Could all this unknown neouro symptoms, the migraines, the SFN be some kind of MS overlap like we've seen with other AI diseases?

[RachelsMom]

Monica,
As your daughter will experience, she will get tired of people telling her of cures. Personally I believe the Doctors are using the wrong "Model" for AI diseases. Until that change is made, there will be no cure. Some of the research that I have been reading is suggesting gene 6 and gene 7 as points of connection for the variety of L-Bacteria that causes these diseases. One of these genes is used for serotonin replication which may connect to the loss of sleep and low serotonin levels. As you will understand... this is just "my" theory.

Currently the best we can hope for with any AI disease is management that slows its progression.

If you have not read "spoon theory" please read it. It could help you understand what your daughter is going through.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Thank you for sharing the "Spoon Theory", it made me cry but it helped me to better understand...

[gphx]

Thank you for sharing the "Spoon Theory", it made me cry but it helped me to better understand...

The person who wrote that is truly gifted and compassionate. Amazing how it rings true to so many with completely different conditions.

[SassieCat]

Irish,

Forums are for everyone to tell it like it is and you have expressed an opinion that I happen to agree with.  Life is seldom 'fair and just' but that is just what it is.... life.  It's funny when most of us were young and the worst things we imagines were equivalent to flies buzzing by.  They just don't seem to matter now that they're past.

I don't think anyone is trying to butter up the prospects of any AI disease.  But no doctor on earth can predict if we'll ever get better or if we'll get worse.  Our own fears tend to over full our thoughts when we think of the 'what if's' in life.  So let's think about this.... let's not try to imagine all the what if's because we simply only make ourselves more sick with worry.  To be fair in this suggestion, compare my thinking to:

What if the person driving on the same road hits my car....
What if the next storm brings a hurricane or tornado over my house....
What is there is a major earthquake...
What if the 'bird flu' hits in my hometown....

See...... there are so many things that are just as real but we try not to dwell on them.  Don't get me wrong, I think about the future sometimes too but I find it only brings me down.  Trying to be positive and take each day as it comes seems to be the best that all of us can do.  

Hugs,
Sassie