Lumbar puncture tommorrow
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October 28, 2008 at 2:28 pm
😮 :confused: Hi,
I finally saw the neurologist and became his patient. He has seen me on 7/28 for EMG, but I was not officially his patient. He said he was shocked that I had declined as much as I did and was upset with my physician that he had not followed me closer. I told him that I felt I continued to decline and specially noticed decreased balance first week of Sept. He has decided to do Lumbar puncture. Ok, now I am really afraid. One, I do not like to think I may have CDIP vs GBS. I know I am still lucky as my symptoms are still mainly my feet, and weakness of legs. I can still walk with rolator but balance is gone. Tingling driving me crazy. [B]Secondly, I am petrified to have the lumbar puncture. I know most of you have had this done. How painful is it? Anything I can do before the test to help aleviate the pain, . Can’t they knock me out and then do test.[/B] -
October 28, 2008 at 3:30 pm
Hi Carolmlee!
I was diagnosed with GBS on 8/5 and it took a Lumbar Puncture to get proof positive. The amount of a specific protein in your spinal fluid is the way they were able to tell it was definitely GBS for me. I was crashing so hard (lost both of my legs in less than 12 hours) I really didn’t have time to get worked up about the lumbar puncture. When it did happen I was anxious of the pain like you so I was surprised that it didn’t hurt like I thought it would. They give you a local first and that helps. Then it is more of a “pressure” for want of a better word. It wasn’t fun, by any means, but if I ever have to have it again I won’t lose any sleep over it. I hope this helps and good luck!
Cheers! Johnny Mac -
October 28, 2008 at 5:28 pm
Hi Carolmlee,
I have had two. The first was slightly unpleasant. The second was a snap. The best thing to do is to try and relax. I know it easy to say but hard to do. You might mention that you are very uptight and nervous and ask for something to calm you down before they start the procedure. -
October 28, 2008 at 9:23 pm
Nice to meet you Carolmlee!
I have had two lumbar punctures. They were a breeze. Please do not worry — just relax and do what they tell you and you will do great! Anticipation is the worst part. Good Luck — let us know how it goes 🙂Iowagal
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October 29, 2008 at 12:28 am
I have had 3. If you can, bring someone in with you to hold your hand. Do NOT look at the needle. Just try to breath and relax. The numbing needle is more painful than the actual LP. You have to lay still for a couple hours afterwards to avoid getting a massive headache. Its really not as bad as it sounds! Good luck!
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October 29, 2008 at 1:13 am
Thanks everyone, I will do my best to relax. I will let everyone know how the test goes tomorrow. Thanks for being here for me
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October 29, 2008 at 11:37 pm
Just checking in and wondering how you made out today. Hope it went well for you.
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October 30, 2008 at 1:07 am
Had my Lumbar puncture. I was really surprised that the pain was minimal. I felt like I was getting a shot. The neurologist used a needle that he gets from germany that is very thin. He says this stops headaches. It has been
10 hours since the test, so far so good, no side affects. I started neurontin today, again I am surprised as my tingling in face is gone. Also, for the first time, my feet are not cold. I feel alittle loopy, like I had a valium. I will take the medicine 2x a day dosage 300mg/ I have not found out the results of test yet, expecting a call tomorrow. I sure like my neurologist. He is so kind, always a pat on the back to reassure me. This is the first time in three months that I feel like I finally am talking with a doctor that can explain and tell me expectations.
Had a little set back Monday. My physical therapist dropped me during a balance activity and I sprained my ankle and stretched thigh muscles. The ankle that was hurt is my bad foot. Hey, atleast I am feeling the sprain, that is new. Actually, I have alittle more Range of motion in the foot, so maybe the stretching of the muscle loosened it up. Today I was able to walk again with paind, so it is a mild sprain.Again to all of you, I so appreciate your responses to my thread. It is a comfort to know that there are people to talk to that understand what I am feeling.
Will let you know results tomorrow.
God Bless, Carol
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October 30, 2008 at 4:41 am
I am glad that the LP went well and that you like your neurologist. I hope the results are good, or if not that, at least tell you something that allows you to move forward in life. WithHope
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October 30, 2008 at 7:04 pm
Got the results from my LP. There is not signs of active disease or indication of CIDP. I still have small amounts of protein in fluid but neurologist said it was minimal. I am taking the neurontin and it is a wonder drug for me. My tingling in face, hands and chest stop, my hands do not feel like sandpaper and I can type better, my feet are not cold and do not feel and as stiff and clumpy. And, boy am I mellow. I feel like I am on valium and am so relaxed.
Another good thing happened today. I have a large skin cancer on my lower leg, that was to be removed surgically and then a skin graft to be done. Since I have GBS, the dermatologist did not want to do the surgery so we started using a cream called Aldara. It have been a month since I started using the cream. I saw the dermatologist today and he said the cream is working so we will continue with this treatment and hold on the surgery.
So, this is a good day -
October 30, 2008 at 8:04 pm
I am glad that you are doing well on the neurontin and that your LP went smoothly. The people here are really helpful about explaining tests, procedures and different treatment therapies. Hope to hear more from you and your progress!
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October 30, 2008 at 10:20 pm
Isn’t it great to get good news…Keep up the good work.
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October 30, 2008 at 10:51 pm
I still question the test finding protein in my spinal fluid although minimal. This is not good right? The neurologist still does not want to do IVIG. Would the IVIG get rid of the protien in the spinal system or get rid of what is causing this to conintue to be in my system
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October 31, 2008 at 7:52 am
What was the count on the protein in your spinal fluid? It may still be getting back to normal.
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October 31, 2008 at 9:48 am
I donot know the count, so I will call and ask. His nurse was the one who called me and told me everything looked good and that the protein was minimal. I am going to call and find out.
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November 3, 2008 at 3:53 pm
Hi Carolmlee,
So what did you find out about your count? As I recall you should see a pretty elevated count for GBS. A “normal” person’s count should be less than 10? Mine was 325 which was a dead giveaway apparantly.
Cheers! Johnny Mac -
November 3, 2008 at 4:02 pm
Keep in mind not all cidp/gbs patients have elevated proteins in lp. Hope you are feeling better.
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November 7, 2008 at 7:55 pm
I called mu neurolist to get the count but only got to talk with his nurse She could not tell me the count and just reitierated that there was protein but not to worry could be residual . Oh well, I am just glad it is not CIDP, no offense to all of you that have CIDP. I am feelinng stronger, walking alittle better. I feel comfortable walking with quad cane in the home, but use three wheeled rolator in community. Still having good response with neurotin.
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