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Living with Polyneuropathy CIDP, GBS, & CMT

Relapse?


#1

Hello all,

While I'm quite active myself on the Sjogren's Syndrom support page, this is my first time posting here. Unfortunately my three daughters and I are all affected with autoimmune issues.

My youngest daughter was diagnosed with mild GB last spring after a bout with the flu and bronchitis. She had a series of five IVIG infusions administered at home and has been surely but steadily recovering ever since. Two weeks ago she came down with cold symptoms which once-again developed into bronchitis. Now she tells me her feet are numb and tingling and she has some pain in her legs. I can't bear the thought of her experiencing a relapse and was wondering how common it is. Has anyone experienced a true relapse, or could her symptoms just be recurring while she deals with this latest illness?

I am especially concerned because my brother has CIDP, which I'm sure you know is the chronic version of GB. She's only 23 and I worry about her future.

Any info you could provide would be helpful.

Liz


#2

I had a relapse 6 months following my first bout of GB. I too was diagnosed with bronchitis, but my relapse relapse seemed to more parallel my taking a very strong antibiotic than the bronchitis. From the first day of medication to the last my condition steadily worsened until I was back in the hospital.


#3

You need to look at some medical journals - but relapse is very rare. I believe I once read it was 5%.


#4

I'm sorry to hear your daughter is experiencing symptoms again.

I too was diagnosed with a mild case of GBS Fall 2013. I had the IVIG which I was told would stop the progression of symptoms. A year later in September I was worse than when 1st diagnosed, and now am even more symptomatic than then. In fact the description you posted sounds just like mine, except I have burning everywhere, shooting pains, and heavy fatigue. I guess one would call this a relapse.

Back to the neurologist I go.


#5

So sorry to hear she has numbness, I would think GBS is still in her system as they say it can take up to 18 mos to recover so I hope she is just experiencing an annoying flare up which with rest and good care should recede and in a week or so might be much better when the cold improves. Cold weather really plays into my numbness and certainly aggravates things along with colds, lack of sleep etc. ( I had GBS in May). On the down side yes relapses and full blown GBS can happen in up to 5 % of patients. I had GBS 30 years ago the to my horror and shock got it again in May. Not fun. This case was/is much more severe and I pray this will never happen to her. Big hugs. On the upside, I am a fighter, I am getting better, except for numbness I function actively doing all that I was doing 6 mos. ago. Don’t dispair, think about getting some positive affirmation stuff going ( Louise Hay " You Can Heal Your Life cd’s/book to stop the worry thoughts which really don’t help. Best wishes to all of you, sending healing prayers your way.


#6

Every time I am sick now I get symptoms like you have described. I'm only 1 year into recovery so hopefully it will get better in time.

Now instead of getting aching muscles with the flu, I get burning pain and pins and needles. Every time I am scared it will not go away, but (so far) the symptoms have resolved back to my current recovering state as I've kicked the cold/flu/virus


#7

Thank you all for your comments and concern. We spent Thanksgiving weekend visiting our oldest daughter in Boston, and her major complaints were a debilitating migraine and a terrible case of restless leg syndrome. Do any of you suffer from either of these??? I hope and pray that she continues to improve and her symptoms resolve as the days go by.

Liz


#8

Hi Liz,

The best advice I received was not to compare how you feel today to last week, but to compare how you feel to 3 months ago, or even better 6 months ago. That way you'll get an indication of if you are making recovery progress. Check with your daughter how she feels on these time frames and you might get a better indication of her progress

I also had a mild case which began in November 2013, and I'm definitely still recovering. I have also experienced new problems along the way. For me my symptoms in July this year were a lot different to my symptoms in November '13, so I don't think it would be that unusual for your daughter to suddenly start getting migraines / Restless legs as a symptom of GBS recovery. I can vouch for teh restless legs from experience!

What I do know is that as a whole, I am making steady progress which is what I was told would be the case.

I also find that changes in routine wipe me out quickly. This weekend my wife and I went Christmas shopping, and by the evening my feet and legs were killing me like I'd just run a marathon. I also travel with work, and every time I get home I sleep a lot more than normal on the weekend. Thanksgiving would have been a busy time and probably a long day. For me it would be normal to experience an increase in symptoms after this which subside with rest.

Sending you best wishes!


#9

Hello, My husband also had "mild" guillan barre. It all began about 2 yrs ago with a flu shot while on longterm antibiotics, - without giving great detail there was a bout of bronchitis before the initial GB symptoms began (he eventually did 2 rounds of IVIG). So now two years later he got bronchitis again, the numbness, weakness and some nerve pain started again (nothing as bad as before). He did take antibiotics again because the cough was very bad. We also did a number of supplements to help him through as the cough wasn't getting better - lung tonic herb tincture, Traditional medicinals tussin tea (for the cough), . When ever he has had bouts of numbness he starts on these supplements which he used during his recovery and he also has taken them intermittently over the last 2 years- phosphatydal choline, cal-mag butyrate, omega 3 fatty acids, B complex vitamin. Plus the vitamin D was used during initial recovery as he had very low blood levels, have your relative check levels this is very important for immunity!.

I also had him go off wheat and dairy (he does eat it when he travels for work and I think this exacerbated the illness). I think it triggers the autoimmunity. I tried to get him to do the full auto-immunity diet but it was too restrictive for him to manage. Diet wise for the most part I try to keep it really healthy- I included a wide variety of mostly organic fruits, vegetables. I try to serve a lot of winter squash and sweet potatoes so he eats less grains. I now try to buy organic chicken and meat. I also used olive oil and coconut oil for the fats to prepare the food instead of other unhealthy fats (to help with the myelin). Now the cough is gone and the numbness is slight in the fingertips but much better than it was a few short weeks ago when we thought he was relapsing. I hope this helps and wish you and your family all the best!


#10

Hi everyone I was wondering if during a relapse or worsening of symptoms did you have a second lumbar puncture and IVIG was then given or did they just give you the IVIG?? I had a second lumbar puncture not high protein this time but symptoms worse pain back legs feet numb so bad unsteady and numb now up nose inside mouth and tongue. Thank you all for stories good to know others understand.

Regards,
Dawn


#11

I had a relapse in June of this year with a second lumbar puncture. Protein level was down from about 250 to 100. I had plasmapheresis both times. Second time not so much pain, but return of paralysis from waist down faster recovery to use of walker. Now at home where I walk w/o a cane. When out I use the cane.


#12

Thank you Petra today at 4:30 my hope is to know more and to get treatment.



Petr said:

I had a relapse in June of this year with a second lumbar puncture. Protein level was down from about 250 to 100. I had plasmapheresis both times. Second time not so much pain, but return of paralysis from waist down faster recovery to use of walker. Now at home where I walk w/o a cane. When out I use the cane.

#13

Hi Liz-

Sorry to hear about your daughter. Seems like I've had a very similar GBS situation (as does someone else on the site that I talk to....almost identical situations for us). I was diagnosed in early December 2014 and received the 5 day IVIG treatment in the hospital, after which I felt like i was steadily getting better for a month. I thought I was out of the woods and this wasn't going to be to bad.

About 4 weeks after my treatment, I did have a relapse. I noticed the tingling/fatigue/pain getting worse, but the real sign my neurologist was waiting to see was if my coordination/balance got worse. Unfortunately, it did and I was given another IVIG treatment, this time over 2 days at home.

Now it's just kind of a waiting game. I feel pretty good now and my balance is steady, so that's good. The plan with my neurologist is to keep a close eye on it, and if I start to turn for the worse, I'll get another IVIG treatment. Unfortunately, that pattern can continue for a long period of time, but the goal is that the "good periods" after IVIG start to get longer and at some point, it sticks. The good news for your daughter and I is that she did react well to IVIG, so there's no reason to think she won't continue to. It's just a waiting game, which can drive you nuts. However, the guy that I've spoken with on the site had 3-4 IVIG treatments (the last in September I believe) and since then he's had a steady recovery and hasn't needed any additional treatments!!

Way too early to worry about CIDP. Sure that's possible, but right now, there's no reason to worry about that possibility. My best advice is to keep preaching patience.....and this is the hardest part, but try to roll with the punches. She might need IVIG 2 more times, she might need it 10 more times, or she might never need it again,. She's got age on her side, so hopefully that helps!!

Give her my best and if she'd like to reach out to me directly, feel free to send me an email on the site and I'll send you my personal email. I've found it VERY helpful to have someone to talk to that's had a very similar experience. It's much more difficult to identify with patients who've been in the hospital for months, on ventilators, in comas, etc. Those individuals have such a bigger hill to climb, than the lucky one's who had more mild cases.

Andy


#14

I am going through something similar myself and came on to seek information too. Good luck to you and your daughter.


#15

Every time I get sick I get major tingling/ numbness but seem to weather it okay without a relapse, just come to expect it now when my immune system fights infections and feel less scared about a full relapse though definitely hate these recurring bouts. You take care and hope your daughter keeps getting better in spite of common infections causing concern.


#16

Hello, My husband had mild GB and he too would have intermittent bouts of numbness and tingling esp when he was about to get sick or run down. One time we were worried the was relapsing and the doc said this was rare to relapse and he did not infact relapse. For the last 16 or so months since this time we thought he was relapsing he has gone gluten free. His tingling has greatly improved and he really hasn't gotten sick in any way since. Anyone with an autoimmune disease should consider going at least gluten free and if you really want to get a handle on things look at an autoimmune diet which is very restrictive (we did this for only the first 2 weeks of the time he we thought he was relapsing- but gluten was the problem for him). We also found B vitamins phosphytidal choline, omega 3 fish oil and B vitamins to help. Best wishes and good health for you and your loved one!


#17

I had Guillian Barre almost 27 years ago. It was not a light case. I was paralyzed, but I have fully recovered. I was never on breathing equipment. I think in all it took about 3 to 4 months. I was in the hospital for 45 days. Anyway, I do not feel I have much in the way of a relapse. However, I find when I sit on the toilet and read (excuse me - but it is what it is) my legs become very tingly and I have a hard time walking for about a minute. At times like that - I wonder if that is partly from the Guillian Barre. Well, I am 70 now, so I just have to count my blessings that I can do everything I want to do at this point, with no restrictions. I hope you continue to do ok - and have no relapse. I do not eat any special diet and, I do not buy any vitamins other than what I get over the counter. NebrettA


#18

I got Gbs in the fall of 2013 and had a relapse in the summer of 2014 following a bout of bronchitis. Both times I had 5 rounds of plasmapheresis. I still have numbness and tingling of the legs (constant) but I am 74. Young people always do better so God bless.


#19

This discussion is very interesting to me. I joined this group after a May 2014 bout with what was diagnosed as very mild GBS. I was extremely thankful as I knew I had dodged a bullet since I only experienced muscle fatigue and various really bad sensory symptoms (feet, legs, face/eyes/ears). I had no treatment at that time and was back to feeling almost perfect within a couple months. In September 2014 I began feeling that old familiar squeezing in my ankles and feet. Neurologist couldn't see anything wrong physically or on the EMG. Over the next few months more tests (no spinal tap) but he said I was fine. He had no answer for why I was continually having symptoms that were getting worse. I saw 2 more neuro-muscular neurologists at major teaching hospitals. After more tests, one diagnosed me with CIDP, the other said I didn't have it but had no answer for my worsening symptoms, other than something related to my original GBS. I prayed he was correct but when my hands started burning up last July I started regular IVIG treatments for CIDP. It's really hard to say if this is helping - symptoms still ebb and flow regularly. I'm still walking, but my feet are now pretty much without any feeling, and my hands seem to be on their way to numbness as well. So after this discussion I'm now wondering if this could be the GBS and not CIDP even though I'm going in the wrong direction? There are no good answers unfortunately and everyone is so different. I'm starting another IVIG treatment tomorrow so I'm hoping the half of my face that feels like Novocaine numbness and my screaming feet and hands will be a little better soon. Thanks for listening! My heart is with everyone of you.


#20

So sorry to hear that your daughter is experiencing numbness/tingling with another bronchitis infection. Try to keep positive, work on wellness, the tingling/ numbness should recede as the bronchial infection clears up and her immune system gets stronger again. Very scary but probably not a reoccurence full blow but rather an annoyance that you can deal with/ work through, big hugs. Have had GBS twice in my lifetime, now two years after the 2nd bout ( 66 yrs old) the numbness/tingling has never gone elbows to fingertips, knees to toes but I do everything as if it isn’t there including going to the gym every day etc. She is young and has a great full life ahead of her. Rooting for you