No, Erin, I don't fit under the new McDonald criteria, so I am wondering if there is any point in seeing a new Neuro.

I've been like this since the fall of '05, so I don't feel any optimism that I will ever get any help.

Chelle

Don't give up!!! Something is going on and it may just take some more time and the right dr. I know it must be so hard and frustrating for you and you have been suffering for a long time. But, keep at it. If anything, finding something that will treat the symptoms until you get a definite dx will help. Also, did any of this happen after having a virus? Viruses can cause a CNS infection and some of the issues you are having.

Just hang in there the best you can and definitely keep checking in with us. We are always here for you.

tkrik,

My DH is retired, and we've gone through half of our savings, seeing doctor after doctor. I spent two years in bed, until my D.O. came up with a combo of meds that eased my back pain, enough for me to stand and walk.

But they're not helping so well anymore, and everything else he has tried, has just contributed to my bowel issue.

But nothing has helped with the lack of sensation in the interior **** sphincter nerves.

I guess it's hard for me to understand, why, when doctors look at me, and I'm 5'2, weigh 80#s, and I am in this much pain, they don't look harder for the answer.

I had a virus back in '97, but my small fiber neuropathy didn't begin until March of '04.

Serious back pain began in Nov. of '05, and by Christmas, I was down for two years.

I spend most of my days now, laying on the couch, with a pillow under my stomach to support my spine.

Movement causes pain.


Chelle

Chelle - I am so sorry you are suffering so much and for so long and have no dx or a treatment plan that will work for you. I don't know ho you feel about alternative medicine. I go back and forth about it myself. But I do know many who have been helped by it. One lady I know goes to a Chinese practitioner and has been real happy with him. He does some pulse checking thing and has been able to treat her with herbs and she feels so much better. Another person I know goes to a naturopathic dr for her back issues. She gets accupuncture, massages, and herbs as well as other medicines. She just loves her as she has helped so much. My brother and his family go to a homeopathic dr and they love her as well. One of my massage therapists' clients had bone cancer. She started seeing a Chinese herbologist and he gave her some herbs to help her with the pain. It didn't cure the cancer but it did improve her quality of life.

Hearing others stories almost has me convinced to try going to one myself. BUT, it's the cost that prevents me. Medicare does not pay for alternative doctors/practitioners with the exception of a few of them. So, I haven't gone to any. The only thing I do is get a weekly 1/2 hour gentle massage. My massage therapist gave me a great rate, one that I could afford. These massages have helped me tremendously with all the spasms and such I have going on.

As for the sphincter, I know what you mean. I don't get that all the time but I have experienced it and it is painful - like take your breath away painful. Maybe mine is just a spasm, I don't know, but it will not release so that I can make movements. And, it can take a few days to settle down.

Do what you can to keep yourself comfortable. I will keep you in my prayers and hope that you finally get some relief.

tkrik,

You are so sweet. Thank you for your kind words & encouragement. I think, if I knew a good natuopathic doctor here, I would give it a try, but I live in the sticks and not much here. And, like you, the expense would be prohibitive for me.

My DH gives me massages all throughout the day, and it does help.

I guess I don't understand, why, my G.I. Doc knows I have no nerve sensation in the interior **** sphincter muscle, but neurologists don't know anything about it.

The sphincter itself is so tight, that stools are narrow like a pencil and it won't empty completely, and the stool has to be firm enough to force the muscle open.

I know my back pain would improve if only they could fix this sphincter nerve issue.

Up until a month ago, I was a Eucharistic Minister, and attended daily mass.
It became too hard to dress in the morning, so I had to stop.

Thank you for the prayers, you are in mine as well.


Chelle

I had them, but I can't remember how many. I had little ones that looked like pin holes. I only had them in my brain.

In '07, when I had my brain MRI's, I only had 1 white spot, like a pin hole, but I know many people have been diagnosed without visible lesions, because not all lesions are visible on MRI's.

Chelle

Oh, you did have a spot. Well, maybe you do fit under the McDonald criteria. Has your new neuro seen the MRI you had done in '07?

Yes, just the one spot. No, I haven't seen the new Neuro yet. Her assistant has not returned my call for an appointment.

And I haven't called again, because we had to take my Yorkie, Kia in to the Vet this morning for a blood draw for a chem panel. She's 12.5, and in April her BUN was elevated just a little.

So, I've been nervous about the results.

We're being extra cautious, because we lost our nearly 15 year old Yorkie, Sydney, on 2/28, to renal failure. She was my "Heart & Soul" dog, and part of me, died with her.

Sorry to hear about Sydney. Losing a pet is like losing a family member. I hope things go well for Kia.

I would try to get your films from where you had your MRI and bring them with you when you go for your appointment. That will be helpful to your neurologist.