Hello Chelle,

Yes, I was diagnosed based on a positive LP (o-bands), neuro exam and symptoms. However, during the whole diagnostic process I was in a severe exacerbation (relapse, attack, flare-up)...it was very obvious something was wrong.

Depending on the lab that ran your LP results 2 o-bands can be considered normal, you will need to see what your Neurologist says to know for sure.

Best wishes

Hi, Snoopy.

Originally, my former Neuro said "MS", and then, he retracted the DX. So, my Neurosurgeon has referred me to a new Neurologist, and I am just waiting for an appt.

Thank You,
Chelle

Under the new McDonald Criteria, you would need to have at least 1 lesion to be dx with MS. (http://www.mult-sclerosis.org/DiagnosticCriteria.html) I was diagnosed under the 1st criteria. I have both brain and spinal lesions. I never had an LP so I don't know what my o bands are. However, o bands can occur in other conditions as well. It's the pattern of o bands that can assist in a dx of MS or other conditions.

But, MRI's are not 100% dependable. MRI's are done in 1/4" slices. Within that 1/4" a lesion may have been missed. I know that may sound scary to you but it does happen. I think many of us have experienced going for an MRI and getting the results and finding out that a few lesions are "gone" and on the next MRI they are back again. It's that 1/4" slice issue. Additionally, spinal lesions are very difficult to find not only due to the 1/4" slice but also due to all the things that are compacted in the spinal cord. They are easy to miss. Mine are in my thoracic spine. They show up best when I am in a flare and gadolinium is used.

Since your neuro took back his dx, he may have decided to be a little more conservative since at this point you don't fit the McDonald Criteria and there may be something else going.

I do hope you start feeling better soon and can find out what is going on.

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.