An Annual residual occurrance?
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April 23, 2009 at 10:38 am
Hi;
I too seem to be going numb again, slowly, but its there.I was diagnosed with GBS two years ago. My symptoms began with numbness in my toes, then feet, calves, etc. also in my hands, then I started getting weaker and less balanced. About 2-3 weeks later I was in the hospital, at my worst I was unable to walk and mostly immobile. Scarily, my doctor actually had GBS as well, and he walked with a cane and could not open his hands fully. I was finally given IvIG, and I guess that seemed to help. My bounce back took time but progressed to the point where I was almost as normal.
Long story short, since then, I have had “residuals” or a recurrance of symptoms, at the EXACT same time each year, in April. This may well be nothing more than coincidental. Last year at this time my residual symtoms were minor, and eventually went away.
As I write this I fear that I am regressing fruther and faster than last year, and fear also that I will continue to regress. Not to happy about that prospect. My feet and hands are “buzzing”, feeling a little numb, and I feel a little weaker walking up stairs.
Professionally, this time of year is one of added mental & some physical stress (I teach and also coach a spring sports team whose schedule becomes quite long and competitive right around now); I wonder if stress plays a large role in reactivation of symptoms…? Allergens? My sense, or thought is that it is possible that my self-imposed stress is a factor, but the strange thing is that stress couldn’t have caused the disease, so why is it aggravating it’s residuals?
Maybe I am a mild CIDP case, my sense is that there is no black & white with GBS/CIDP.
ANy thoughts on stress-related symptom reactivation would be great, or if anyone by chance also has an annual recurrance of symptoms, or any general advice, Id appreciate it.
I am new to the forum and appreciate all the information it offers. -
April 23, 2009 at 11:40 am
Hi: Stress can certainly make residuals act up but, given your story, my strongest advice is call your doctor right away. If it is CIDP you should get treatment before it does any more damage to your nerves. IVIG treatments could help right away. If the symptoms are residuals all you can do is get more rest, but I would recommend you find out. As for annual residuals, I have not noticed that although many people speak of the trauma of GBS and that trauma can get retriggered by anniversaries. Jeff
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April 23, 2009 at 12:41 pm
Jeff;
Thanks. How does one become CIDP diagnosed? Are there identifiable clinical distinctions between it and GBS or is it based on a doctors opinion? I am wondering how I might become a patient with CIDP rather than GBS…. Not sure which is better or worse.
I did see my primary care physician yesterday and I am to report back to him in 10 days to see if I am better or worse by then.
Thanks again -
April 23, 2009 at 3:35 pm
sorry no info
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April 23, 2009 at 5:44 pm
No GBS here but with CIDP. Seems like every year at the same time I too get attacks. They come and go and some times are worse than others. Last year was really really bad. This year the numbness came back but not as bad as last year. But either way it’s best to get checked. Hope you feel better soon! Hugs
Linda H -
April 24, 2009 at 7:25 am
Hi again;
Thanks. For milder recurrances, I assume there is really nothing that can be done, other than rest? When you get recurrances, do you just wait it out? Thanks again,Tom
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April 24, 2009 at 8:41 am
Before GBS this time of the year when it gets light earlier in the mornings and stays lighter at night I come out of my Winter hybernation and am more active. I have noticed that I have an annual slump that does occur each Spring from less and less rest! I am more active both mentally and physically. My days are longer and therefore my residuals are increased this time of the year. It does level off and I enjoy my Summers and make my best recovery during the Summers. Winter it is a natural thing to hybernate and become less active and have shorter active days. Lack of light is known to cause depression that time of the year too! Our diets change too and we eat more comfort foods. I am sure that stress from an extra Spring time job would also kick up some residuals. Just take each day one at a time. Call your Doctor and also check to see if he/she wants to do those tests after you research them. I was just ill 103-104 fevers for two days and that has given me a step backwards in energy level. I just don’t get as fatigued as I did. Last Summer that just left like someone flipped a switch! I know from where my tiredness is if it is from the GBS or just a busy or over active day. The GBS I feel from the waste down. Spring cleaning will bring on stiffness and that heavy feeling in my whole body. Residuals from the GBS only effect my lower body! I do still have the numbness in my hands and feet and it moves slightly up and down taking over the ankles and wrists. That changes day to day and a few times in a day! I don’t take any pain meds but the burning does get on my “last nerve” It just for me is not lasting very long and will change and is not as bad as most have that pain meds are necessary! Everyone is different and I consider myself very fortunate, yet I struggle each day! Listen to your body, talk to your doctor and REST! I will be meeting with my GBS-CIDP group on Saturday and I will do a survey of what they are experiencing this time of year. Interesting thread and this is where these things turn up if you keep a Journal you can compare if you don’t have an event like coaching that also starts in the Spring too! I will let you know what I found out at the meeting there will be people there that had GBS and also CIDP people unless the 80 degree weather keeps them at home and working in the yard or other outdoor activities! Spring is here!
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April 24, 2009 at 9:00 am
Thanks for your note, this is extremely helpful.
Rest for me is hard to do, I felt good for long enough that I went back to a very active lifestyle, but I am a little sobered up by having the symptoms come back again, almost to the day, or my orginal occurrance.
Your points about the seasonal change are excellent, actually fascinating, and certainly I have increased both physical and mental exertion…. and this could well be the cause of what I am feeling now, as it is, along with the timing, a carbon copy of the symptoms I had the first time I had GBS. -
April 24, 2009 at 9:29 am
Tom,
GBS has an acute onset. A person reaches the bottom within 1 to 4 weeks, and then begins to improve. CIDP is diagnosed when a person takes longer than 6 weeks to reach bottom, and does not improve quickly or easily. From everything that I have read or discerned from doctors who specialize in GBS/CIDP, GBS does not usually become CIDP. People like me, who definately had GBS, may still however suffer years later from problems stemming from that acute GBS attack. I also had bouts of numbness and other symptoms through the years. I have nerve damage from the GBS.
With the new treatments for GBS today, often a person is treated before it is known whether or not it is GBS or CIDP. That is why there is so much misdiagnosis and confusion.Take Care, Susanne
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April 24, 2009 at 10:37 am
Tom I know what ever it is, it gets your attention. I notice things now that I never did before. I do pay attention to every zing and zap and twitch now! I just can not help it! It is fun to see others jump when they get a zap or a zing and I just make a mental note but don’t react, but they are there! Cramps are what get to me! But from when I had the hic ups several times an hour and to when I had suffered from constant yawning the body has healed and until I get tired you would not be able to tell I had GBS. My hubby can pick up on when it is time to go home. The eye lids still rapidly fall like a baby! Some mornings I can not open up my eyes until the muscles are ready! Takes a few seconds but I notice the delay! I still get the cramp in my tongue which just sets off a panic I can not explain. I have to immediately talk to myself “breath thru your nose” and stay calm! Yeah, right, but it aways goes away. No meds are going to take care of those things they are so far apart to take meds for! I even have a hard time describing them to the Doctors by the time I get an appointment! Oh can we write a book on this stuff or what! WOW I admire those that done just that!
Well put Susanne you selected the wording just right! That is what I have heard too!
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April 27, 2009 at 11:57 am
hi reading your post ican add my case.. had miller fisher varient 10 years ago and have had recurrent problems about once as year , doctor has no idea but symptoms, can be different but seem so simiolar to gbs ,, numb foot, slightly numb hands , feel and look tired suddenly. twitching also when asleep , feel like shaking but not actually visible , also now headaches for a month ,also if i move my head i get dizzyness doctor says might be an aer infection yeah right i dont think it can be triggered it seems not when things are good for me but seems following say happy working at home but very busy ,bit of flu or some lousy chest virus , i take very small amitripyline dose.. do you take any drugs at flare ups do they work ??? anna
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