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Posted 5/2/2011 1:18 PM (GMT 0)
Ftgirl- I have empathy for you. I can not imagine going through that....I hope that all is well wih you. My results still have not come in. I hope I'll here something by the end of the day. I am anxiously waiting.
Posted 5/3/2011 2:43 AM (GMT 0)
Lisa, I know it's a weird question, but what answer are you hoping for?  I know it's a double edged question but that's probably how you'll answer.  We've been waiting so many years for answers.
Posted 5/3/2011 11:34 AM (GMT 0)
I am waiting for them to give me a diagnosis, because I know that their is something terribly wrong with me. I want to be treated with the proper medications. I do not just want meds given to me, because of symptoms. I need results. I am prepared for anything, because I have been doing a lot of suffering for these past few years. The longer that you experience things..... You become prepared for anything. I wish all of this would go away, but I know that something wrong with me. The not knowing is what gets to you. ttyl
Posted 5/3/2011 11:49 AM (GMT 0)
Ditto for me.

My evoked testing is on the 10th.

have a great day!
Posted 5/3/2011 2:27 PM (GMT 0)
I'm assuming that your Lumbar puncture  test results were fine. Please stay strong, because I have had my ups, and down with this issue.  I talked to my Neurologist Assistant, and I will be going in for a follow-up appointment tomorrow. I want to know, and need to know. I hope all works out for you with the Evoke test. I just want answers. I am sick, and tired of being sick, and tired. That is the reason why I am anxoius to hear something. I need treatment. I have a positive attitude at this time to try, and beat whatever comes my way. It may not be MS....It could be anything. God forbid, but if it were cancer...I would fight it with every ounce of energy that I have.... Have a good day!!!!!
Posted 5/4/2011 5:59 PM (GMT 0)
ftgirl- I went to Neurologist today. He said blood work was fine, but the spinal fluid was not. They found bands. I was told by my Neurologist that he was not too sure that I have MS...He said that I have so many other symptoms that should not be ignored. I will be getting further testing..ttyl
Posted 5/4/2011 9:52 PM (GMT 0)
Oh Lisa,

I am sorry! You have brain lesions and o-bands? How many more tests does your neuro want to do? If this neurologist isn't an MS specialist, you may want to seek a second opinion. I hope you get answers soon. If it is MS, you will want to consider getting on a disease modifying treatment. Most people/doctors feel that MS is better treated early.

Google; copaxone, betaserone, avonex, rebif (these are the common treatments for MS)
Posted 5/4/2011 11:11 PM (GMT 0)
Lisa - I'm sorry to hear that the LP showed the bands.  Have you done the evoke testing yet?  Did you ask what other reasons might be that you would have both, the lesions and the o-bands? 

 

Gretchen, maybe you can answer the last one - what else would cause both?

 

Well Lisa, at least you have what seems to be most of the necessary testing done to get them to move quickly.  If they don't seem to aggressive in finding the reason, push, push or find someone else. 

 

You'll get through this - it's what moms do...don't fight like a girl! cool

 

Posted 5/4/2011 11:17 PM (GMT 0)
BTW, still waiting on my LP results. It has been a week and I may call tomorrow. My surgery is next Friday (5/13) and even thought t won't make a difference in the surgery, I still want to know.
Posted 5/4/2011 11:57 PM (GMT 0)
Hey Nanci,

The only other thing that it could be would be Lyme disease. Lyme disease brain lesions look very similar. 0-bands just mean there is an immune response occuring in the brain. The fact that blood is fine is the tell-tale indicator of an autoimmune thing happening in the brain. There is no infection............just the T-cells attacking the brain's myelin.

Lisa,

The fact that you have not only brain lesions but spinal lesions and 0-bands really makes this appear to be MS. Brain lesions can be caused by several other diseases, disorders etc. Spinal lesions are quite rare; MS is the most common cause of spinal lesions. I am no expert; I am not a doctor. This information is just what I have learned from my own diagnosis.

Please ask any questions you may have about treatments etc.
Posted 5/5/2011 4:48 PM (GMT 0)
I've just joined this forum today and have been reading this thread.  My heart goes out to you (wilma).  So much of what you say resonates in me.  I've been going through 3 years of hell, with the same narrow minded doctors' opinions, and worry. 

I am so pissed off with it all now that I've joined 4 health forums and posted under Lyme and MS, as I'm determined to get to the bottom of this - I feel I've had to do my own research to find any answers!!

I feel so poorly and have a family of mixed ages, two teenagers and an 8 year old, and some days feel I can't function.  Knowing others are going through this **** helps a bit!

I really wish you well - I think that although the last thing we would wish for is a diagnosis, that may be the only way to find resolution, and so peace of mind.

 

Posted 5/6/2011 1:24 AM (GMT 0)
Hi Lisa and welcome native, 

it sucks to need to join the forum but incredibly helpful when we need a place for info from people who are going through the same problems. 

Lisa - anything new for you?  How is your husband dealing with the results?  Have you talked to your kids about any of it yet?  It's hard to talk about what you don't know. 

Today I called my neurologist's office and it was busy for hours.  I was heading up to see my mom and his office is actually in her town so I thought I'd just stop in and see if they had the results yet.  The girl at the front desk pulled me up in the system and saw my info and she said that she'd have the nurse call me.  I told her that I'd had the bloodpatch and it worked well.  The nurse called me about an hour later while I was at my mom's, which was awkward since I haven't talked to her about any of this.  She thinks the multiple appts. are because of my colectomy.  I had a hard time covering up the reason for the spinal tap but managed.  I'm probably wrong since moms always know everything.  Anyway, the nurse told me all of my results were back and that she was having a "desktop meeting" with the doctor and they'd be calling me back.  Not sure what the "desktop meeting" means but I assume they were just going to discuss my results and call me back.  I asked when it would be and she said (it was about 110pm) that the next patient was at 2pm and if they didn't get back to me before that, then it would be at the end of the day.  I really couldn't ask any questions with my mom sitting right there.  Guess what - no call!  It leaves me thinking the worst or wouldn't she have just told me everything looked fine?  So now I'm stuck waiting until tomorrow...  My husband said he had already assumed it was MS since they haven't been able to figure it out for so long and then the lesions on the MRI.  He has never been my cheerleader but I sense something different this time. 

Now that I have just told you that my husband has never been my cheerleader until tonight, I'll tell you what happened the other day when I asked if he would take care of a couple things for me after I come home after my surgery.  He looked at me like i had two heads!  I think he thought I'd be running a 5k the following week.  I said I'm in there for five or six days and you think I'll be running errands right away?  He said it was because it's what i do - recover quickly.  I am not taking chances with this surgery.  A couple of years ago I had surgery and I didn't have a relaxing recovery.  I thought I felt fine and started ripping out bathroom walls at our other house.  Then one evening while I was using the pry bar I thought I heard something very wrong in my body but the pain wasn't too terribly awful.  I'm sure something happened in there but not quite sure what. 

I am still hoping to know the answer before the surgery, but we'll see what happens tomorrow. 

sorry for the rambling but i'm getting antsy.

g'night

Posted 5/6/2011 4:44 PM (GMT 0)
Native- Welcome to this forum ! It  is so wonderful to share things with  other's that are going through the same things as you are.... My advice would be to keep pressing forward, and not to give up. If you are not satisfied with one doctor.....Please get a different doctor. I have went through numerous doctors. We all know  our bodies, and know when something is terribly wrong.

Gretchen- Thank you so much for your advice. My Neurologist has stated that I have MS, but their is also other things that can't be ignored.  I also have problems with my breathing, Pain shooting through temples of head,  headches, swelling that won't go away, difficulty swallowing, hair loss  etc. I am glad that I found him, because he could of just treated me with the MS, and ignnored everything else. He is the only Doctor that has taken an interest in me. He is an excellent Doctor. I wish that I could have seen him a couple of years ago. I will keep you posted.

ftgirl- How are you doing? My family has been told. They have been very supportive. I hope that everything works out for you. You definitely need to rest., and take care of yourself. You are important, and we want you to be part of this forum for years to come. I would explain to your husband that you are not able to do the same things that you did in the past. You are getting older, and have medical complications. Please keep me posted.

To everyone on this forum.....God bless all of you.

Posted 5/6/2011 5:28 PM (GMT 0)
Hi Wilma and Fitgal,

thank you for your kind words - they really mean a great deal, as I know you have your own very real problems to deal with.  I will keep searching for the reason for my declining health - I'm on the Lyme forum on here too, just to find out as much as I can about my symptoms.

I really wish you both the best of luck with your treatments, and thank you once again for your encouragement.

 

Posted 5/10/2011 5:09 PM (GMT 0)
Hello all!

Lisa, I hope you are doing well and have gotten together with your doctor to make a plan of attack.


I finally talked with the nurs at my neuro's office and she said she had good news and bad news - the good news is that my LP looked "fairly normal" and no bands. Yea! But then the bad news is that they don't know what is causing the lesions. No Lyme, no lupus, no Sjogren's, etc.

I went for my Evoke testing testing today and the SSEP (?) part was awful! I thought it was supposed to be painless. The pain was the same as I had in my hands while in the ER about ten days ago. The pain was only in my left ankle and foot. After the signal stopped pain subsided. He told em I was done and I said, "good, I thought you were going to do my left foot too." He said "We did, you couldn't complete the test." I have to be honest, the word he used wasn't "complete" - I was just about to type his comment when I forgot the word. I'll add that this is a common problem with me, losing a word. No matter what I can't think of the right word. Anyway, I felt absolutely nothing in my right foot, as if he didn't do it at all. I asked when I should hear and he said 7-10 business days. I'm going in for my colectomy on Friday for about 5-6 days then home, so I guess I'll come home to the news - good or bad.

Anyone else have the evoke tests and can provide some help?

thanks
Posted 5/10/2011 11:16 PM (GMT 0)
I had evoked potentials as part of my diagnosistic process. My SSEP was painless. I could feel mild/painless zaps. My results were much faster. The doctor called me in 2 or 3 days. My results were; hearing was normal, lower extremeties were delayed, vision was abnormal.

I am little confused. I understand that you felt extreme pain on the left side, and you felt nothing on the right side. Is the pain the reason you couldn't complete the test?

Hopefully you will get some answers soon.
Posted 5/11/2011 12:33 PM (GMT 0)
Gretchen, I am also confused. First, I thought it was supposed to be painless and instead it was excrutiating. The tech was not exactly pleasant and I thought he had actually finished the testing. He never said relax or made any other comments or asked me about the pain or anything. When I asked about the right leg and he said he did it I wondered why I didn't feel anything in one and such pain in the other. The pain in my left was so similar to the hand issues I had at the ER on April 29th. I think I sent you a message about that.

I'm not expecting the results before my surgery but I might just call sometime tomorrow afternoon. I will be out of commission for probably a week. If I'm alert enough to care I can call from the hospital. I actually can't believe that in 48 hours they will be removing my entire colon. I am not excited about the recovery period but in the long run I will be so much better off.

Thanks for our input.
Posted 5/11/2011 1:39 PM (GMT 0)
I want to wish you the best of luck with that! I will be thinking of you Friday. It is a major surgery. I am confident they will do a good job with you and manage your pain. I know someone who had this same surgery. She did real well.

She had colonic inertia from MS and just couldn't deal with the chronic constipation. She was developing real damage from it. Enteroceles and rectorceles. She is much better now.

I hope this creates a much better situation for you. Let us know how you are doing when you are able. God Bless!
Posted 5/11/2011 1:48 PM (GMT 0)
Thank you Gretchen! I put on my "skinny jeans" and flipflops (even though it's chilly and damp here in Maine) and heading out to the mall for a few last minute things and also groceries so my kid don't starve. I already bought my first one piece (sort of) swimsuit to protect the scars from the sun - I'm being optimistic - trying ;-)

I have been dealing with the CI for way too long and had the cystocele and rectocele done two years ago and also endometrial ablation. Weird - my last surgery was just a couple of days before my son's high school graduation and now my surgery is just the day before my daughter's prom. She's being sweet (it happens occasionally) and coming to the hospital before the dance even though it's nearly an hour each way to the hospital.

Did I read somewhere that you are from California? If so, me too - Riverside. I have been on the east coast for seven years, the last five and a half in ME. Way too cold for me!

have a good day ;-)
Posted 5/11/2011 10:54 PM (GMT 0)
I am about 45 minutes from Riverside. It's a small world.
Posted 5/11/2011 10:58 PM (GMT 0)
I lived in Lake Elsinore for a while while working in Temecula, then Riverside, Colton, then back to Riverside until 2004. Wish I didn't leave but at the time it was best for my family. Now I'm not so sure but things change and you just deal

Strangely enough, my daughter who is in high school had a student from her last middle school (Delaware) move to her current high school here. Wow - really small world!
Posted 5/12/2011 4:32 PM (GMT 0)
Hi Fitgal,

hope you don't mind me wishing you luck for tomorrow.  I feel like a bit of an intruder, being new to the forum (and undiagnosed!), but reading about your forthcoming operation, I just felt I had to say I really hope everything goes smoothly for you.  Jan.

Posted 5/12/2011 7:52 PM (GMT 0)
Thanks Jan - I really appreciate it. I did laugh when I read your comment, "I really hope everything goes smoothly..." It's just funny due to the nature of the surgery. ;-)

What tests or appts. do you have coming up? I'll be sure to check on here as soon as I am feeling up to it.

have a good night! Idol results night (fun to watch with my girls even though we all pick different singers).

nanci
Posted 5/13/2011 6:34 AM (GMT 0)
Hi Nanci,  you're right about the 'running smoothly' comment, there was no pun intended.

I have yet another doctor's appointment next week - it's early days for me, even though I've been suffering for over 3 years.  I'm going to push to see another neurologist, as I feel I need further testing.  Things are definitely getting worse, but hopefully I'll find out what's wrong with me some day.

If you read this after your op, hope you're recovering well.  I'll be thinking about you today, Jan.

 

Posted 5/16/2011 12:53 PM (GMT 0)
PLEASE PLEASE understand that many of your symptoms are indicative of lyme disease. There is great controversy in the medical community regarding lyme. I have it and it took many many years to get a positive test. The testing is extremely unreliable and inaccurate. There remains little known about this disease and many very qualified doctors just are not familiar with lyme. Research and read the lyme forum. You need to have an evaluation by a LLMD, lyme literate doctor, or you will not get well if you have lyme or any of its coinfections. I have it now for possible 10+ years and was told I had everything from depression to menopause to anxiety to fibro and am now feeling 90% better after 2 years of antibiotics, even though the medical profession swears there is no such thing as chronic lyme. Check it out, it could save your life. Best to you.
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