New-Questions Steroids/abnormal CSF
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February 15, 2007 at 10:47 pm
I’m a 38 y/o female Family Practice Dr andmother of 2 young children with GBS 1/8/07. I presented with 2 week fever/chills/ malaise and morning onset of neck pain and frostbite hands/feet. TX with ivig post a 5 day delay in DX(1st neurol missed DX-even though I told him I thought I had GBS). I insisted on a repeat NCV(1st only slightly abn) since I repeatidly C/o paralysis, tingling, double vision, eyelid droop, foot drop, unable to ambulate, severe neck and back spasms. I was Tx and improving, out of hospital, gait improving. My hematocrit dropped to 24 and they thought I had acute hemolytic anemia also but this was ruled out to just be too many blood draws. They had started me on prednisone and tapered me off fast when above ruled out. I then had a relapse of severe neck and head pain and a repeat spinal tap CSF showed elevated pressure protein and WBC’s. Cultures and extensive infectious work-up negative. I had a normal initial spinal tap(which caused 1st neurol to miss the GBS) that caused a spinal leak requiring a blood patch.I also ran fever until 6 days ago despite the ivig and prednisone. I’m now tapering the prednisone again. The neuro wants me off (fasr taper)and the rheumatologist wants me to slow taper(I had a negative rheumatology w/u except for dry mouth- Sjogrens). Any ideas why elevated spinal pressure, fever, HA relapse(now gone), prednisone efficacy/harm with GBS? Now just fatigue, ataxic gait, balance problems. Any help appreciated!Dr. Shawn
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February 16, 2007 at 7:15 am
Dr Shawn there is a Miller Fisher variant of GBS with ophthalmoplegia, areflexia and ataxia, prognosis is good. Steroids used to be used in GBS until it was found to exacerbate the disease in some people. Raised protein in CSF is typical of GBS but raised pressure, no, query this with your neurologist as in theory it suggests infection or obstruction. DocDavid
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February 16, 2007 at 2:27 pm
DocDavid thank you for info. Neurologist said this week he thought I has some sort of viral syndrome(maybe viral menigitis) that went with the GBS. . I have a friend who had a child with Miller Fischer and she is completly ok now -! year later post plasmaphoresis. Neurologist is still sticking with GBS. He is giving me a good prognosis but only time will tell what residuals I may have. I’m currently tapering the steroids. For now I’m just very glad to be responding to the ivig. I live in Jonesboro, AR, USA. My sister lives in Harpenden, England. Thank you for the info/help. If you know any good research articles I can read please let me know.Dr. Shawn
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February 16, 2007 at 4:16 pm
Dr. Shawn,
Sorry to hear of your illness. GBS has so many varients, presentations, and symtoms that is is often misdiagnosed.
I had GBS 3 yrs ago, and my the first spinal tap and nerve conduction studies were both normal too. Later nerve studies proved grossly abnormal. I declined another spinal tap. My dx was 3 mos. after onset, so I did not receive treatment. Some of my residuals sound similar to yours. My gait problem resolved on it’s own, my balance is still improving, and Provigil (200 mg 2x day) have helped with the fatigue.
I think you will find this website and the UK website the best resourses for information about GBS. Our members keep up on the science and research, plus give help with discussions about managing the illness and residual problems, as well as give emotional support when needed. A thorough read through the archives should provide you with lots of information.
Meanwhile, rest, rest, rest is the best thing you can do for your recovery. Best wishes,
Suzanne
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February 16, 2007 at 5:11 pm
Thank you Suzzane!
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February 16, 2007 at 5:21 pm
DocDavid,
I got on the MF threads and it does sound a lot like I may have had a MF varient.I remember my tongue was numb until 48 hrs post ivig. I didn’t eat a bite for 8 days(lost 10 lbs in 2 weeks). The L eye droop, r face twitching, and double vision all resolved within 48 hrs post 1st ivig TX(7 in all). Is this the same prognosis? It looks that it may be better? I am now 3 weeks from my last ivig TX. The neuro said it lasts for 4 weeks. Should I be worried about relapse next week? (neuro wasn’t concerned) Or am I worrying about nothing? Does one relapse make CIDP?Dr. Shawn -
February 17, 2007 at 5:25 am
Dr Shawn don’t worry about relapse, your busy life hs proably taken a bit too much from you, is it possible to rest a it more? CIDP requires persistent active disease for mor than 8 weeks. DocDavid
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February 17, 2007 at 9:58 pm
Doc David, Ok I’ll try not to worry. I am doing better- no fever for 1 week, slow increasing endurance, gait is better but still ataxic. Very concerned about going back to work soon(overhead is very high-self employed)but I can’t even drive yet and definitly not up to my normal 11 hour on feet all day work day. Are you able to work with the CIDP? I do have overhead and disabilty ins but it only kicks in in 3 months (6 weeks from now). I am getting a break with overhead(slight) from my partners for the next 6 weeks. We have savings and can afford it – I just feel like I’m letting my patients down. I’m sending my husband back to work next week(he has been on Family Medical Leave). If I go back now for 1/2 days(I doubt I could do it) I would not be able to make enough to meet my overhead. Also if I go back to work and can’t do it I have messed up my disability(if I need it in 6 weeks). The neuro says I will be back to normal in 4-6 weeks- I doubt this- progress is sure but slow and in reading the treads I am worried about future disability.Should I start back and hope for the best?
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February 17, 2007 at 11:02 pm
Dr. Shawn, may I wade in here? You have barely gotten started with the GBS life! Please don’t take yourself back to work before your body is ready. That disability stuff can be nigh impossible to “get back”. It would be amazing if you don’t have to deal with fatigue for some time to come. I would wish that for you but the reality is . . . The fatigue is not something easily described and most won’t understand when you try to tell them. Your neuro appears to not have the most current info on GBS. Many of us here have had to, or I should say have tried to, educate the medical people involved with us. It’s an uphill climb 😮 but we continue for the sake of those who will yet experience this disease. I wish you “well”. 🙂
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February 18, 2007 at 1:08 am
Dr. Shawn,
I have to ‘chime’ in here with Judy. Believe me, this is hard because you belong to a family prac. and I dont ever claim to know more than you (please dont be angry with me for saying that). But …… knowing what I know from local family doctors, you obviously will learn so much more having had GBS than even possibly your neuro. …… once again, I apologise ….. So many of us have had such horrible experiences with some doctors.:o There are patients who have had GBS, who have battled for years and years with fatigue, pain and some kind of disability, and that does not mean they have CIDP, residuals last a long, long time – and will probably diminish as time goes by. They live with this year after year, and to a certain extent it, the GBS is not acknowledged. There are families who have lost everything, and because nothing is ‘seen’ to be wrong’, people think they are lazy, and so MANY doctors jump on the band wagon and say its all in the head.
As Judy said, you are barely started with GBS, sorry to say once again. I had GBS 21 years ago, was completely paralyzed, had a trach for 6 weeks, and for just over 18 of those years after that, I led a relatively ‘normal’ life. Only, thank goodness, suffering from fatigue and occasional foot and hand pain- now, unfortunately it is a different story, with doctors not wanting to even hear what I have to say. I am sure that you will slowly, but, very slowly, get back to where you feel you can deal with your practice. I know that this is stressful, and believe me, stress leads to residuals that rear their ugly heads. Dr. Shawn, sometimes I believe so strongly that things happen for a reason, I am hoping that, regardless of how angry you are with me for saying this, that maybe your reason is to educate other doctors who are maybe not sympathetic to our (and others) cause. (Personally I dont enjoy visiting the doctor, and dont do so unless really necessary, but they dont take me seriously when I do go to them)
Please do not be angry at what I said. I am so glad that you have joined our forum. DocDavid has been, and is such a blessing to our lives. When he has been in hospital everyone on the forum is in a “state”. We know that you will be there to encourage and give us your expertise knowlege, just as DocDavid has, and hopefully, we will be able to help you with the ‘encouragement’ side.
All my best
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February 18, 2007 at 2:33 pm
Judi and Alison,
Your advise is valuable. Like you said the neuro/Dr. aren’t a lot of help. I have learned more with my own research, this forum, and the info from the GBS Association than I have from my doctors. I’m the internal meds 1st case and the neuro acts like this is no big deal and I will be better soon. I was mis diagnosed for 5 days(even when I asked them about GBS- they blew it off as Migraines). I have great sympathy for all the patients(like me) who where not believed- and I was a doctor well known to all my doctors/colleages. Actually 2 different neurologist and my internist missed the DX – and my case was classic presention. The fatigue/weakness is so hard to convey to people. If a had a cast- I would get so much more forgiveness for my “laziness”. I actually had a cast in past(horse injury) and was much more accepted. People see me and say -You look good -When are you coming back to work? I went 6 minutes on the elipitical last pm and did my PT exercises and gait became extremly ataxic and I had to crawl up the stairs. I tell my legs to do something and they just can’t. I’m used to running a mile a day , barrel racing(horse), and working long hours. I’m on a steep learning curve about GBS but I have a lot of acceptance and learning to do. I would be glad to help others and be on the “team”. How do you contact people individually on this forum? Do we give out emails addresses? I live in Jonesboro, AR. This is about 1 1/2 hr from Memphis and 2 1/2 hr from Little Rock. I personally know 3 other families who have experience this. 2 were children. We had 4 cases in Jonesboro this year and 3 last year. Seems like alot for 55,000 population. There was even a fatality last year- 3 ER visits mis-diagnosed. We learn about this in Med School but it is brief and not really taught as one of the true emergencies(which is is). I use to work 4 different ER’s moonlighting to pay off my loans. The Advance life support class doesn’t even mention this disease. I totally support md education- especially ER doctors about this dz. Let me know how I can help. Everybody has already helped me so much. Dr. Shawn -
February 18, 2007 at 3:32 pm
Dr. Shawn,
You can contact individuals by private messaging them. If you left click on the persons user name, one of the little tabs should say send a private message, or send an email (that is if they have allowed that). The forum will send a message to that person saying that they have a p.m or email. In your private message, you may decide to give your phone number, which is totally up to you. I have spoken to so many forum members by phone, or got together with them. On the top right hand side, you will see a box that says :Welcome Dr. Shawn and below that you will see a tab saying private messages which will take you to your message box. Hope that helps
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February 18, 2007 at 3:40 pm
Dr. Shawn,
I just sent you a private message.
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