Do I Have A Mild Form of GBS
AnonymousNovember 13, 2006 at 10:14 am
I am posting my message again to try and explain more clearly my symptoms. After becoming acquainted with this web site, I am starting to believe I may have a mild case of GBS. Unfortunately I have a small town family doctor who seems to be content with a diagnosis of post virus syndrome. Well it has been 6-1/2 months. Please Help. On April 16 I came down with a severe sore throat – within days I noticed weakness in my legs. One week later I had to call an ambulance because of difficulty breathing, numbness in hands and feet, weak legs, thought I was going to die. I am 45 years old and was relatively active – biking, skiiing, etc. After ruling out pulmonary embolism I was sent home. Two days later it happens again. This continued with added symptoms such as palpitations of heart, irregular heart beat, and at my worse could not walk or use my hands, although this return with 24 hours leaving me with very weak legs, difficulty walking and feet and hand numbness, and continued episodes of breathing difficulties. In July I started to have vision problems – could have started earlier, became unbearable – had to get glasses, even though I have had lazer corrective therapy a few years back. Have had normal MRI, normal blood work. Extensive heart tests-all normal. Reflexes normal, maybe off around knees. EMG normal except for long F waves – do not know what that is. Today I have breathing difficulties, to the point where I have to stop everything I am doing and rest for hours to have the heaviness settle down. Feels like someone is stepping on my chest. Legs continue to be weak, walking is awkward. Numb hands and feet. All can be intermittent but daily. Any suggestions.
AnonymousNovember 13, 2006 at 11:39 am
The breathing problems are of [B]serious[/B] concern. With GBS, you can stop breathing suddenly. If you are alone when this happens, you could die. You should be in the hospital, so you can be monitored.
Your symptoms do sound like they could be GBS. Suggest this to your doctor, as most docs don’t think of this dx since GBS is relatively rare. Take print outs of articles from this website (Home page and search) to show the docs.
The presentation can vary considerably with each patient and most docs are only familiar with the textbook information about GBS. The textbook info. is often incomplete or outdated or simply incorrect. Those of us who have been through this can tell you this with certainty.
I suggest that you get another neurologist involved immediately, if the one you are seeing doesn’t take this seriously. If you do have GBS, there is no way to predict in advance how bad it will get.
Also, if you do have GBS, you should be started on IViG or plasma pharesis, as soon as possible.
The earlier you get this started, the faster you can stop the progress of the disease. Also, your residuals will be less severe.
Please take these symptoms seriously, even if your doctor doesn’t. I speak from experience because I had GBS and my doctors were clueless.
Best wishes for quick treatment. Please let us know how you are doing.
AnonymousNovember 13, 2006 at 11:59 am
Please only post messages once instead of posting seperatly in different forums. I responded to your original post in main forum. I am a bit confused as your posts are different. In the main forum you mention you only had long F waves and in this forum you mention you only have long Z waves.
Your post in the other forum made it sounds like all your symptoms come and go frequently like episodes. This post makes it sounds like your numbness, etc have not gone away after the initial onset. Can you please clarify and it would be helpful if you deleted one of the posts instead of having two threads on the same topic.
EDIT: I see you have three posts on the same subject asking if you have GBS. Please post a question once, do not continue to post the same question multiple times in different areas.
AnonymousNovember 13, 2006 at 1:55 pm
If you have come down with GBS, then it seems that the onset would have been towards the end of April. Taking that into account, the progression of the syndrome takes up to 4 weeks, that means that the attack on the nerves take place during that time. If progression continues aftr that point, then GBS will not be the diagnosis. Treatment will have no benefit if the nerves are not still being attacked, as treatment is done to try and stop further damage. In the same ‘GBS family’ (for lack of a better word), is SIDP, which has a longer progression time, I think its up to 8 weeks, and then there is the chronic form of CIDP. As I said in a previous post, the thing that worries me the most at the moment is your breathing. I really feel that a doctor should be doing more to find out what is going on, if not, and I know its hard and most of us have been through this, you need to make them sit up and listen.
Please keep us updated.
AnonymousNovember 13, 2006 at 6:40 pm
Ali makes some very good points, especially about the time frame as a variable on different forms of GBS.
This has been going on for much too long without you getting any help. Don’t let the docs put you off – something is obviously very wrong with you.
Insist that they find out what it is or send you to another doc.
AnonymousNovember 14, 2006 at 8:17 am
Ditch the small town doc and go to a teaching hospital in the nearest city. You should have a spinal tap to see if there are elevated protein in the spinal fluid. However, even that can come back as normal and it be GBS. Remember, it is your health, and your life, if you still have a feeling in your gut something isn’t right, go with your gut dont listen to the doctor.
AnonymousNovember 16, 2006 at 8:53 am
Thank you for sharing your knowledge. I am so convinced I have GBS/SIDP/COPD that after 20 years with the same family doctor I finally made an appointment with a new doctor for next week. Hopefully he will listen to me and sent me to a neurologist. The one I saw previously was in Emerg, and she wasn’t to thrilled to see me. My walking is getting worse, very weak awkward, and extremely slow. Does anybody’s feet get purplish? Still having difficulties breathing, throat is starting to act up this morning. Wish you all well.
P.S. Sorry about the duplication in articles – just learning how to use this web site. Don’t know how to delete messages – sorry.
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