Newbie Struggling with GBS diagnosis

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Good Morning

I had left foot drop x 6wk and then right foot weakness develops. Right foot progressed rapidly over 2 days and so they said I had to be hospitalized for GBS. No LP done. I did not have any identifiable precipitating infection.

I was treated with IVIGx5 days in hospital with improvement of leg muscle weakness on right and some improvement on left and improvement in reflexes as well.
I came home 10 days ago.

And 1 week post discharge from hospital [last week] I had and EMG/ NCV : per neurologist: “The EMG test did show some chronic nerve changes consistent with nerve issues in the toe extensors in both feet (the extensor toe muscles); did not see the definitive slowing on the nerve conduction test that we may see with GBS, but sometimes if the process is happening more proximally in the nerve,may not always see it”

I got gabapentin for pain, developed peeling skin on face and so I stopped it. A friend recommended Arnica [ homeopathic med for pain] and Hypericum [homeopathis med for nerve healing]. I am doing both. Pain is better.

I get tired easily. I have to rest after10 min of activity!!! I was fit before all this happened. I have not gone to HIIT in 2 months and no yoga either [not able to hold poses] at this point the fatigue will prob kill me.

It is hard to go from being the person who could do so many things: holding a full time job, raising an active 4 yo, hiking traveling, house work: cooking, cleaning, laundry to this 48yo person who has to rest more time than she spends moving around.

I feel sad. How do you reconcile the memory of the person i am to the person I am right now?

Everything I have read about GBS says that it is 2-4 wk to plateau so my symptoms do not fall into that time line and I was checked for everything: spine MRI with contrast, brain MRI and tons of blood tests, No abnormality except vit d def and iron def. I am told I have a variant of GBS.

Anything from the group here to help with

  1. Can I have GBS?
  2. How do you spend time at home resting when everyone has gone to work/ school?
  3. What to do about the sadness?

I have to say, I was not ventilated and I am able to get around with a walker [tiring and painful without a walker, did that for the last 1 wk after neuro said my strength was better and then crashed over the weekend so back to walker] . I try to focus on the positives but hard to do when no one is around all day.

The PT exercise are exhausting and all they are asking me to do is raise and lower my toes and knees and some core muscle stuff.

Thanks in advance for listening to me,

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There is a very wide variety of GBS types and outcomes. Mine (I’m a 66-year-old male) primarily affected my hands (still can’t extend my fingers 15 months later, but still have hope), and leg muscles only secondarily. I used a walker for nine weeks and attended PT for a total of 15 weeks; I now do stairs two at a time, can walk in definitely and at various paces, and have relearned how to jump up onto and down from 6 inch high surfaces (initially, very scary).

I regained strength and endurance over time. At PT, a focus was on sitting down slowly (working the hamstrings and quads), gradual improvement over eight weeks. Yes, it was tiring. After you finish with PT, continue working with a trainer (perhaps in a gym) who is experienced in dealing with clients who have limitations. I am now tiring myself out doing squats from a lunge position. I have learned to relish the experience of overtaxing muscles, with soreness lasting up to three days – it means I’m getting stronger. You will get stronger also.

I had a repeat EMG at four months, which was still inconclusive as to whether axons were damaged, which suggested that the disease had persisted for several weeks after receiving IVIG. I am slated for another in three weeks to follow up on a working hypothesis.

While my neurologist initially projected a full recovery in less “weeks to months”, he now speaks of recovery over 2 to 3 years (the nerves to the fingers are very long, and the damage to the myelin might be at any point thereon). I started with an optimistic outlook on life, and maintain it by ticking off the increasing number of functions which I am now able to do by myself. I think of GBS as “trying on old age to see if it fits, with the intention of returning it if it doesn’t”. The tryout period is stretching longer than I would have liked, but its character hasn’t changed in my mind. BTW, I am using Dragon Naturally Speaking to dictate to this, since I can type with only one thumb.

So long as you tire easily, choose a magazine with short articles, or a book of short stories, or even poems. Listen to podcasts and explore musical genres. Invite someone to play Scrabble with you. Bone up on something that will help you at the job you will return to. Take up a new hobby (I had been learning to play duplicate bridge, and continued to do so using the computer even during the eight months I didn’t sit at the table – I now use a wooden card holder).

The key take-away: you deal with the body that you are given (not with one that you idealize from another time).

David

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Thank you David. I am sorry you are going through this too.

My feet were the first. My left hand was weak 1 wk after I got the IVIG [ at my last neuro exam]. Is it normal to have continuing new areas of weakness? I wonder.

My Neuro has said I will be able to go back to work in another month. I am planning on that.

I am better this week than I was last week, I can sit for 1 hr with my daughter in the mornings this week.

I am unable to do PT exercises, too tiring to move my toes and legs. My RN said I should just do 2-3 times instead of 10 every 1-2 hr.

I like your idea of ticking off the things I am now able to do. I am going to try that.

I love to paint, maybe I will start that. I just thought of putting together family picture albums. That should take up a lot of time, I have 10 yr worth to organize.

I am grieving for what I have lost and will eventually get to accepting where I am today. But thank you for the key take away. I need to get to that place to feel ok with how I am today.
Thanks

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Green pea,
I can definitely sympathize with you. I have had symptoms since 2015 and wasn’t officially diagnosed until 2017. I have progressed to the point that I have to use a walker all the time, (I have foot drop in both feet) and a wheelchair is being designed specifically for me. I have no nerve function from my knees to toes and elbows to fingertips and very little nerve conductivity from knees up to my back and elbows to neck. The fatigue and pain are so bad, there are days that I wish to not wake up. I have been seeing a counselor, who has helped me deal with the sadness and help me overcome, the emptiness that is felt when you know that you can’t do what you once did. The best advice I can give you is take it one day at a time and try to find something that can keep your mind busy. I would also highly recommend counseling. These two things will not cure your sadness but, it helps to be able to vent your frustrations to someone. Knowing your not alone in this battle is also a good thing. If your family is patient and understanding, they will help you through all of this. I hope this makes sense and you know we all are here to help each other. Keep your chin up and keep venting.

Pam

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Hello Pam

I noticed on your profile that you have CIDP. I am sorry it took so long for your diagnosis.

Finding this board has been helpful, I know I am not alone in this.

No one I know has GBS. They would not know how to support me and I do not know what I need for support at this time.

My best friend has asked me to talk to the doctor to get on an antidepressant, it would help with the pain as well. Maybe I should ask the doctor to see the counselor too.

Today, I feel much better than yesterday except for joint pains: knee and ankle, and only on moving around. When I am not in pain or not moving around, I feel like my old self and I forget I have a problem. I feel like I am in my pre GBS life. And then the afternoon fatigue comes on and I realize I have not done much. I wonder if I am ok but just sitting around for no reason. Then I walk for my water and it all comes back.

If you saw me it would be hard to believe I have a problem. I can walk short distance like to the kitchen even without the walker. It is just that my joints, toes, feet and legs started hurting after not using my walker for 5 days and I have to rest and get back on the walker. The walker is giving me a lot of support.

I walk slow without walker and am not able to run. I would like to believe I will be back to work in 1 month.

Are there folks that have mild GBS like who were able to go back to work in 2 months? Can I build my endurance quickly and go to work soon? Are there others on this board like that?

Thanks
Hemal

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There are others on this board who have the same exact problems you have. With the holidays approaching it has very quiet on the discussion boards. You can also try putting in your title GBS. Now, the depression is something you must get on top of before it consumes you. In my opinion seems like it already is taking a toll on you. Talking to a professional, will help you let all those feelings out and give you an avenue of expression. You’ve gone through a major lifestyle change, you need to understand what happened to you before everyone else will understand it. You must see someone regarding your depression. See your PC and ask them for help. They can prescribe something to help you. I also strongly recommend the need to talk to a counselor it’s the best avenue for you. As far as rushing your recovery, you can’t rush how your body’s going to recover from the GBS. You have to take it one day at a time and do what your body allows you to do. What you’re doing is like a vicious cycle, you’re pushing yourself and hurting and then it remind you just how much you’ve lost so the depression kicks in and makes it worse. I know it might not make sense now but you have to take it one day at a time and if you need to use your walker use your walker. You have to come to terms with the fact that you’ve had a major trauma happened to you and your body needs time to recover, as much as you wanted to hurry up and get back to normal, you’re going to recover at your bodies pace. My advice to you is you need to take it one step at a time, talk to your family and express how you’re feeling as much as you can, get on an antidepressant and you need to go see a counselor. I know you might be reluctant about seeing a counselor, for me its the best thing Ive done for myself. Good luck and if you need anything, please don’t hesitate to ask. I will do my best to get back to you soon.

Pam

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I had a much worse type of GBS. I was hospitalized for three months, in a coma for 7 weeks, followed by 4 months of outpatient physical and occupational therapy. I was lucky that I had a desk job and could go back to work while I was still in a wheelchair. I’m now two and a half years out from diagnosis and I was just released by my neurologist last month, not because I no longer have symptoms but because my condition appears to be stable. I can walk with a cane but not very far without sitting to rest (maybe 50-100 yards). Before I got GBS it was not unusual for me to take a hike in the mountains and walk 10 miles or more. It’s very difficult to realize those days are gone and many things I had planned on doing are now never going to happen. Out of all the issues I’ve had with this disease, pain, weakness, fatigue, etc., the worst by far was depression. Please see a professional even if it’s only so you have someone who will listen when you talk. Counseling helped me tremendously, I still get sad occasionally when I want to do something and can’t but it’s not the crushing sadness it once was. Good luck and try to be patient, recovery is not a sprint, it’s a marathon.

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Thank you Mark.

You certainly had severe GBS. Sorry about that.

I am glad to hear you were able to go back to work. Gives me hope.

I have a standing and walking job, and am keeping my fingers crossed since I seem to have a mild case of GBS. I hope to be able to be at work without a walker / cane. I am int he health care field…

The PT did say go slow and pace it so as not to have setbacks, even when I start work to ease into it or I will go backwards. My new mantra is literally one day at a time and enjoy it to the fullest. I like what you said" Recovery is not a sprint, it is a marathon". I can relate, having done 1/2 and full marathons int he past.

My left leg is worrying me since it has been weak for 2 1/2 months. The foot drop is not much different after the IVIG. The right seems much stronger but it was weak for a shorter time. Not sure if any of this makes a difference though.

I will check about the counselor when I see neuro tomorrow.

When can I start driving a car? Do my legs have to be normal strength or I have more endurance? or something else?

One thing I am thinking is that I am able to do less now than I was 10 years ago, I did the Half Dome and 13.1 and 26.2 miles and I could not do it with my current life circumstances like before GBS hit. GBS is forcing me to slow down and I have no control over it, it feels like free fall. I am going to have to trust that there is a safety net for me.

I like what David said about GBS allowing to check out what it is like to be old. My DH has for the longest time telling me that I am headed to retirement and becoming a senior citizen :wink: [ I have a 30hr work week and was planning to cut it to 20 hr next year only because i have an almost 4yo daughter]. GBS will probably get me there sooner!!!

I am going to treat this as a training for being home all alone…that is the most difficult part in life for me…

Have a wonderful holiday and thanks for all your words of encouragement and sharing of your experience. It puts things in perspective for me. I do not feel alone.

Hemal

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Update: Saw my Neurologist today;
Have chr nerve damage in one nerve in both feet: cause: GBS or tight shoes, since only one nerve, can’t be due to polyneuropathy given my EMG/NCV is normal and esp since I responded to the IVIG.

Muscle strength and relaxes back, still with decreased sensation on exam.

Fatigue is the only problem. I am using the walker to help with walking due to fatigue.

She recommends rest. and food and water.

Does this mean I have recovered ?

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Not recovered – recovering. My guess is that you are stronger now than you were 24 days ago when you last posted here. Are you still doing PT? If not, have you worked (can you afford to work) with a trainer in a gym? Are you tracking your workouts/progress?

At 16 months, I am noticing the ability to separate my fingers a tiny bit. I am treating any change as a good thing. Tomorrow I go in for my 3rd EMG.

It turns out I may also have carpal tunnel syndrome (reducing the sensations in 3 of my fingers), which can be addressed surgically.

David

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Hi Greenpea! I had what was believed to be a mild case of GBS that began following a Tdap vaccine when I was 48 years old. I was a marathon runner and was running 6 miles a day 4 or 5 days a week. I was at the beach when it began with ascending numbness/weakness and within a day or so could barely walk without someone practically holding me. I had difficulty getting the diagnosis because I had an inexperienced (& insensitive) doctor initially. I also had a job where I stood most of the day and had to go out on medical leave because I could not stand, walk or drive. I also struggled with the loss of my previous life as fought my way through debilitation.

I totally get it! I watched so many home and wedding shows and couldn’t even see it that well because I had double vision (miller fisher variant). With time, I would try to get something accomplished for the day but that might be one trip I made up my stairs to shower where I would have to take a break in between shampooing and rinsing my hair by resting on the bed while who knows how much water I wasted. Then I would be exhausted after. I might put a load of laundry in another day and that was it. I had to start accepting the small steps for the day and be happy with that. It wasn’t that easy to accept and I cried a lot of tears for a number of reasons.

But I can say with time, I could do more and more. With that, however, would come setbacks for a day or so. I would yoyo like that but I kept trying. PT was tough but it really helped me. I remember my first day back at my gym when I tried to walk in the pool for a couple of minutes. I was running marathons and here I was barely able to lift my feet to walk a couple of steps in a pool while people 20 years older than me were doing water aerobics with no problems. I had to not think of it negatively. I turned my attitude around and started to joke with my daughter about my grueling workout of pool walking and I proudly faced the people who were shocked to see me struggling. It wasn’t long before I could do more and more. I accepted my limitations but continued to try to do a little more but at a slow pace. Meanwhile, I turned to others before me on this site and asked loads of questions. It was the support that I needed so desperately because they were like me (varying degrees but they knew).

I am almost 4 years out now and I am running again, even racing. Not marathons but I’m so happy to recognize my life again. I realize how lucky I am. I was told it’s a 2 to 5 year recovery period so be patient but keep trying. That crashing stuff is tough and people who haven’t experienced this don’t understand. But how could they? It was hard for me to and I was going through it. Anyway, sorry to go on and on but I decided to find the positives in all of this early on and that helped me heal the most. The positive things with all of this for me are the friendships and feedback I received and passing what I learned on to someone else. I am happy to pay it forward!

Here to help anytime!

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Hello and Thanks Tarhealing and David

I am much better than when I started.

I feel tired mostly in the afternoon and evenings. It is like a roller coaster…

I am actually able to think coherent thoughts in the morning!!! What a relief!

And today, I feel the best I have since this hit me. I can’t believe I have had a whole good day yesterday.

Last week, I had severe shortness of breath with walking and talking. I am an asthmatic so took asthma meds even though they were not helping. Neuro ordered pulmonary function tests and went for it yesterday ager I was feeling better, it shows an improvement in the vital capacity to 2 lit and MIF has improved too since hospitalization. Essentially normal per Neuro.

I have PT they have taken care of GBS that are unable to walk but I am able to walk with walker and she has given me a list of exercises to do at home. I do those when I can [ fatigue/ pain / shortness of breath have prevented me]. But I have pain in both feet and left calf [ my left was hit harder with GBS]. She is thinking not to come to my home any more since she is not able to advance me.
I do not know what to do.

Everyday I wake up I think, yes, I feel better I will go back to work but by lunch I am tired and need to rest it out for the rest of the day. My morning routine involves: help my daughter brush her teeth and and get lunch box ready and sit with her for breakfast. Later in the day I may/not fold clothes. In the evening: I sit with her for dinner and sometimes I give her a bath.

And I get it: about the hair washing: OMG: that is the worst. I have hand weakness and forearm and arms feel ok but it is hard to do sustained activity.

I wonder how I can transition from this to even part time work. How did it happen for you? I have my neuro appt this Friday. I am on FMLA till end of Jan. I do not know if I am ready. I realize today: I need to have a few consecutive good days to go back with minimal fatigue, my hand problem needs to be addressed before I can start and I need to be able to start driving. My neuro has not talked about any of this. How does she expect me to go back in 2 weeks? Who makes the decision of when to start driving?

I have just noticed blurring of letters with reading in the last few days, I do not know what to do with it…Should I tell Neuro? Does it mean anything a month out?

Did you do out patient PT? I have not gone to any gym. Who makes the plan for you to start gym etc?

@Tarhealing: you can’t share enough. It is good to learn about your path , it raises a lot of questions in my mind.

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Hi Greenpea!

My experience was exactly like a roller coaster. Good days followed by recovery days. I would get worn out from the smallest tasks. And I did lots of outpatient PT! It took me 3 years to pay off all of my doctor and PT bills. The PT was well worth it! I did it to begin strengthening my core again. I got a giant yoga ball and did small exercises at home to help also. My PT recommended that I start back at the gym by walking in the pool. They said to make sure someone went with me for the first few times which I thought was crazy to help me get out of the pool. My gym has an indoor pool.

I started out by walking with one foot in front of the other up about 10 or so feet in the pool then turn and walk back. I could only do 2 minutes at first and I could not believe how my legs felt like leg. She said the water would support my body as I began to exercise easily. I had to resist doing more at first because it really would tank me out after. I wouldn’t realize how hard it was until I walked out of the pool. Then I gradually upped my time. She also told me to walk in a serpentine-like line in the pool forward first then backward in the same line. I would also do a recumbent bike in PT which would stretch everything out which kept tightening up and causing pain.

I also found a PT that specialized in balance disorders and he fixed my dizzy issues. He had equipment that could measure how my eyes were turning and said it was slightly off. I could tell this the whole time but no physician could see this when they had me follow a light with my eyes. My neurologist said it’s hard to measure nerve damage in your face. The exercises there and at home helped tremendously!

And it was tough driving again. I had a manual shift and could not hold the clutch in at a light. So, I would pop it in neutral and pull up the emergency brake to rest while my leg would shake. My hands would even shake just holding the wheel from fatigue. It took awhile before I felt like I could drive very far because I just didn’t think my body could make it. But I got stronger and stronger. It’s weird when you first drive out though. I just went around the block at first to try it. Funny, right? I will say the first time I tried to walk on the treadmill finally, I could not make it for the 5 minutes I was shooting for and I was barely moving on it and kept having to hold on to keep my balance. I felt pretty pitiful. When I left out, I slowly walked down the steps and someone asked me if I was okay. Well, that’s all I needed pour out my disappointment with tears streaming. I think they got more than they ever thought. As appreciative as I was to be able to walk again, it was so tough to reenter my old environment in such a debilitated way. But I kept doing it anyway and I got stronger & better with time!

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Hello all

I think last week I turned a corner.
I have fatigue but less than before.
I get tired and in pain with walking and doing PT home exercise x1/d.
I am able to engage in a conversation for 1 hour.

I was frustrated last week that I can not start work maybe till Mar. I have my second opinion appt this week. I am planning to see a counselor due to the postponement for work is disappointing for me.

I saw my regular neuro Friday and she referred me for neuro rehab. I can’t wait to start.

I am having a lots of forgetfulness. did that happen to you and did that get better?

@Tarhealing: thanks for sharing about the driving experience. I got permission to start. I am anxious but willing and excited at the same time. I am excited about the rehab as well. Looking forward. Thanks for sharing your experience. I hope to be able to do the 5 min as well.

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Greenpea, I am so glad you are feeling better! PT & activity always made me tired too especially early on. I know you are frustrated. The whole situation is so frustrating!

I had forgetfulness too and just made sure to make a note of everything so I would not forget. That did get better for me so I bet it will get better for you as you recover too.

Neuro rehab sounds great! Let me know how that goes. I loved any therapy or rehab. Massage helped me too so if you have pain you may want to check about light massage (Not deep tissue).

Try short drives at first. My hands would get tired just barely holding the wheel. I had one side affected more than the other and I could see that hand slightly shaking when I started driving again. It got better though. But with everything I did, I would have good days then fall back a little. I don’t know if you ever get used to it even when you know it works that way a lot of the time. But with time for me, therapy, and massage, the fatigue got better and I could do more and more.

Good luck with your steps, like driving! It’s great when you get to step back into your life but try not to compare too much where you are now with where you were. You have to start to get better and I just know you will get better!

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hello all
I had a second opinion appt with a tertiary care Neurologist. My diagnosis has changed to ac ute transverse meylitis.
The IVIG worked due to demyelination process common to both illnesses.
My recovery with walking and reflexes was speedier.
I have a lot of neuromuscular fatigue and nerve pain.
I have started PT and hopefully can start work once fatigue improves