I only recently discovered that autoimmune diseases run thru my family. My uncle (dad's little brother) died in 1995 while waiting for a heart transplant. My aunt (a nurse) told me that my uncle's viral infection that caused his heart problem had probably triggered an autoimmune disorder of some sort that caused the heart problems and probably caused the pancreatitis that actually killed him. (his heart was going pretty strong when he died)

My other aunt (dad's little sister) has rheumatoid arthritis.

My dad's 2nd cousin (female cousin) is the only other person I've heard of in my family that has MS. She got her first exacerbation the same week her brother dived headfirst into a lake and broke his neck and became a quad. Their mom had a bad year or two after that. She had to take care of two paralyzed young adult children. My cousin apparently got better after they treated her with the steroids. Too bad they couldnt do anything for her brother. I havent met her yet, but I've met her brother. He's really cool. Funny guy.

On my mom's side of the family, half the people there have food and environmental allergies, which are autoimmune in nature. A few of them have the serious ones that can kill you. Lucky me, I'm allergic to seafood and some penicillin based antibiotics.

I have a feeling that diseases like Fibro, MS, all have something to do with allergies or a disease that somehow triggers the immune system and starts the immune system to attacking our bodies.

I have no way of knowing this is true, it just an opinion that I've been getting from reading about MS and other autoimmune diseases.

Hi There Greenjeans, I guess I just missed you. Hope you're sleeping by now...

I just wanted to let you know that I feel your pain (literally!) I am also undx, started having symptoms 8 years ago. I've been through several neuros, and have heard alot of the same crap ("your symptoms are from stress, maybe you're just more sensitive than others, blah, blah, blah".)

Well, in the past 2 years, I have begun really falling apart. I started feeling crappy during a family trip in April 2006 (overwhelming fatigue, backache, urinary urgency and frequency.) Within a few weeks, I had a large herniated disc in my lower back, plus numerous other strange sx (sudden, severe headaches, dizziness, tightness/heaviness in my chest, and intermitent squeezing feelings -spasms?- in my throat.)

I did PT, was able to avoid back surgery, and began feeling somewhat normal. Then, September 2007, I'm coughing alot from allergies, and, guess what? I have several herniated discs in my neck. I was on round-the-clock narcotics for about 3 weeks due to SEVERE pain in my left arm/hand. At this time, my left thumb became numb, and remains that way today. Oh, and all the other crazy symptoms decide to return in full force.

Again my neurosurgeon set me up for PT (including cervical traction), as well as a series of cervical epidural steroid injections. When my arm pain calms down, the neurosurgeon repeats my brain and cervical MRI due to the seemingly unrelated sx. I've developed. The MRI is the same as last time (a few scattered, nonspecific hyperintensities), but the cervical MRI comes back saying there are 2 lesions, 1 slightly enhancing.

Well, next I'm off to the MS specialist, who doesn't see any lesions on the films I brought. So, I have to have it done again (3rd time in 2 months.) This one comes back saying a cryptic: "There are likely scattered lesions throughout the cervical cord." But, the MS specialist isn't so sure, and doesn't want to start me on MS drugs if it's not definately MS. (I have to agree.)

To make a long story longer (and I think this is turning out to be a book!), I have been in pain 24/7 since September. I have been taking Gabapentin (generic Neurontin) for 3 months. It did take a week or so to feel it start working. I do not feel foggy or sleepy at all. It does NOT take away all the pain, but makes it somewhat more bearable. Now, for the bad news, I, did gained weight on it, like some others have. To be completely honest, this is really getting to me lately. My clothes don't fit me anymore....that is getting depressing.

Okay, (taking a deep breath...) what I'm getting around to is that, although the Gabapentin helps, I have often found myself awake all hours of the night due to pain. I spoke with the MS specialist about this, and I got a prescription for generic Ambien. I was a little confused at first because it's not like I'm not tired...it's just that pain keeps waking me up (and keeping me up.) Well, this little med has been a GODSEND. I don't take it every night because I'm concerned I'll become reliant on it (even though my PCP said it'd be fine even if I took it every night.

Now, of course, this won't help with daytime pain, but getting a full night's sleep makes everything a little better. Maybe you could request a prescription for a sleep aid such as this? Lots of people take them, and I'm quite sure your PCP would let you try it out. I have had no side effects at all from taking it. Also, it's not one of those meds that you have to take for a period of time before it's effective.

This won't solve your pain problem, but it might be a tool you could use to help with you pain management. I felt compelled to write all this because I sensed in you the same frustration and (for lack of a better word) hopelessness that I also suffer with. I will pray that you feel some relief from your pain.

No great words of wisdom GJ, having never tried Lyrica, but I send you mega hugs and hope you get relief soon.

I feel the same way.
I keep thinking if we ?ed everyone about there childhood we might start seeing a link. I'm not saying like all the autoimmune diseases would be caused by having just mumps as a child but maybe like having mumps and the measles and chicken pocks, etc.
Maybe we were born with a weak immune system and than after getting out 1st illness our bodies slowly started attacking it's self.



Hay Erin look what I found
http://www.immunesupport.com/library...le.cfm/ID/7938

I even found this,
"Based on a study by the University of Washington of over 1,400 individuals, it was found that those who drank well water on a regular basis during childhood were 10 times more likely to develop fibromyalgia than those who did not. Since many wells contain environmental toxins such as pesticide run-off, we feel there could be a definite link, especially since fibromyalgia seems to be a central nervous system disease."
and,
"Many viruses have been considered and may play a role in CFS including the Epstein-Barr virus (EBV) and Cytomegalovirus (CMV). Human herpes virus 6 is under investigation."

I feel like there are so many puzzle pieces out there about autoimmune diseases and no one putting them all together.

I cant find the link now, but last night I was reading about MS on a website and was really surprised to read that some doctors think that MS comes from having Epstein-Barr (mononucleosis) at the same time as a retrovirus, such as Shingles, is one of the triggers for MS.

Scary thing is, I got mononucleosis in late 1995, I wasnt full blown sick with it until mid-January when my spleen and liver both decided to fight for domination of my abdominal cavity. (they ballooned up and I had to stay in bed to avoid breaking either one of them)

About a month before that, I apparently had Shingles for a few weeks. Gosh, Shingles is PAINFUL! I didnt know what it was, and for some reason, I didnt go to the doctor for it. (probably because of where the little sores showed up. I have a scar that runs across the right side of my....chest... When the sores started to get icky, I was putting washcloths and sanitary napkins in my bra to keep the nasty stuff from the sores leaking out onto my shirts. Ewww!


I only found out within the last year that what I had was Shingles. I know I already had Mononucleosis before the shingles started. I was working in a McDonald's at the time and a girl who worked there was out sick for a month because she had mono. But, she was sick and still working before she actually knew she had mono. Whenever the pop tanks in the store would go out, she could never tell if she got the tanks hooked up right, so she'd draw some pop into a cup, and then hand it to both me and my store manager to taste after she'd tasted it.

Well, both me and the store manager came down with mono... Guess what? The store manager was diagnosed with MS back in 2000 or 2001. Saw her when she was working for a department store. It was her last day at work, she had really bad optic neuritis. She'd been diagnosed about a week or two before and was having a bad exacerbation. She had ON, and her lower body was numb, and she was using a store scooter to get around that day.

It really freaks me out that someone I worked with for 8 years probably developed MS at the same time I did, probably from the same source.

I'd been having problems with vertigo (misdiagnosed as ear infections) since 1997, and every few months I'd wake up with numbness in my hands (thought it was Carpal Tunnel) that would go away by the end of the day.

I havent seen my former manager since that day that I found out she has MS. I'd love to see her again and talk to her about the MS. If anything just to be friends again.

WOW, what a story.
I have shingles and I think I had mono, I was REALLY sick a few years back with what I thought at the time was the flu, I had 104. temp (I have low body temp and if I hit 99. I'm sick, over 100 it's awful) and felt awful for a week and than got a little better but it toke months before I felt OK and I have never been the same since than. Looking back it doesn't seam like the flu now, the only thing I have was temp, body aches, sore throat, cough, shacking and no appetite oh and of course fatigue & headache that I STILL have today. And all this was about 6 years AFTER the fibro DX.

I guess you can say I went down hill from there. It was after this that the numbness started and the slurred speech and memory loss.

Ever since I had mono, I have not felt as good as I did before then. I'd never been that sick before.

I had the sore throat, extreme fatigue, a 3 week long migraine, some sort of icky, nasty discolored goo draining from my nose CONSTANTLY (if I laid down to sleep, I'd feel like I was drowning in it), I only slept an hour or two at a time. I had a fever that went above 104 for a few hours one day. The fever was the worst part. That's the only time in my life that I have ever been delirious from fever. My uncle had died right about the time I contracted mono. I think it was the stress of his death that might have lowered my immune system and allowed me to contract mono.

Because of the lack of sleep, when I started to get better from the mono, I would sleep for days. Once I went to get my paycheck that I hadnt picked up for a month one day...I picked it up, went and cashed it, walked out to my car, got in, fell asleep for about an hour...woke up, drove home, and slept for 30hrs.

I never, ever ever want to be that sick again. The tiredness and fatigue I had when I had mono, the MS fatigue hasnt even come close to being as bad as the mono fatigue yet!

My last day working before giving in to being sick with mono, was the day that our McD's store transferred to the new ownership (old owner died because his pharmacy screwed up and gave him the wrong medication. His wife didnt want to run the two stores they had alone, so she sold them both to the most evil McD's owner who ever existed)

I remember the new owner yelling at me to clean the breakroom, and to fix the broken table that was on the floor. (what am I? MacGyver??) I couldnt even lift the table, and he kept yelling at me. Finally the manager stepped in, and told me to do something else. I went up front and was bagging french fries when all of a sudden, I just burst into tears.

I went and hid behind the ice cream machine so customers wouldnt see me, but everyone in the grill area thought that I had just gone mad or something. I was standing there, and another one of the managers asked me what was wrong. I just stood there crying my eyes out and telling her that I had no idea why I was so tired. She decided to send me home, and wouldnt let me come back until I had a doctor's note.

Went to the doctor and the stupid physician's assistant (same moron who told me in 2006 that my numb leg was a sprain, and here, put some heat on it and it'll be better in a few days...moron!) diagnosed it as a sinus infection. I had told her that my aunt (a nurse) and told me that it was mononucleosis and to give me the monospot test. Of course I was ignored. I didnt know enough to insist or complain about it.

Went and picked up the antibiotics she Rx-ed and went home. Took the abx's and promptly had the well-known reaction to the antibiotics that people with mononucleosis get. (confirmed my aunt's diagnosis!)

Went back the next day, told the PA she was an idiot, the doctor came in, and said for them to do the monospot test, and I had an "I TOLD YOU SO!!" moment. (I really hate that PA) Apparently the mono was making me quite grumpy.

I really do believe that mononucleosis is probably one of the big triggers for MS. I'm sure there's probably at least a half dozen different triggers, but I do think that mono is one of the required ingredients for activating whatever body mechanism that sets off the immune system.

If I could turn my "medical bad luck" into good luck, I'd probably be able to win Powerball fairly often.

So GJ, how did it go with your PCP?

sorry to see you are still dealing with this *** time to find a new ***, lyrica helped for a time for me with the nerve pain but it wasnt the right one it has way too many side effects for me to feel comfortable, i must be honest i am losing hope in the med department lately the side effects are pretty drastic on some of theses meds might as well deal with the ms side effect and not dope myself up anymore tan i have to, i hope you get this dam doc situation straighten out real soon jeannie

Sorry I've not been around...SCHOOL!!!

My PCP said not to get the Lyrica (HE HIS EYES). Instead I'm going to a new spine doctor. The PCP gave me some sleeping pills to get some sleep. It's been working the past few nights

Other than that, same ol' same ol'....

Have a good weekend my friends!


FRANK: Yes, I was really concerned about the side effects...and my PCP echoed my opinion. He said it can be good for the right reason, but it's on the top of his list as a FINAL SOLUTION. I like my PCP