Just diagnosed, first "steps" of the journey

Hello all,

My Neurologist suggested that I find a support group, as this is just the beginning of a long journey.

I had originally been admitted to the hospital after my family Doctor could not find any reason for my fatigue and muscle weakness (had been going on for months). The hospital ran tests and only found elevated antibody counts in my blood. As this was 10 days after a boutique of gastroenteritis, they proscribed a steroid regimen to boost the antibodies to “fight off a lingering infection”.
Three days later, I could no longer walk due to muscle weakness and went to the ER. Once there, I must have had a pint of blood drawn for all sorts of tests. Once those failed, I was sent for a Lumbar Puncture (I told the orderlies that it couldn’t be ALS because I was horrible at baseball) mainly because they ran out of blood tests. My Neurologist (I have a history of concussions and vertigo) does rounds there, so had been brought in for consult. When he checked in on me after the LP, he noticed that I seemed to have misplaced the reflexes in my feet and declared GBS. This was 10 March 2016. The next day, I started IVIG treatment and was released on the 16th.

As I was diagnosed less than a day from the onset of numbness, my initial symptoms were limited to my feet below the ankles. A few days of being stir crazy and I (as so many others have mentioned) pushed myself too far in the name of being “normal” with my family. I have now lost all feeling below my right knee, but can move my foot and toes if I concentrate.

I feel somewhat like a man who joins AA because he has a glass of wine with Sunday dinner. I realize that my case is so mild as to be nearly nonexistent, but my Neurologist, as I mentioned earlier, said it would be good to find a support group.

Jeff

Welcome to the group! But I'm sorry you had to join us. Please don't minimize what you're going through just because your case doesn't seem to be as severe as others. Each case of GBS is unique and is hard for each person to go through.

You need to be careful not to overdo and give yourself time to recover. Your diagnosis is so new, take a little time to learn about GBS and how to best move forward. Are you having any physical therapy? It is important to rehab in the correct way, you want to be sure not to work against yourself.

I hope you continue to move forward and do not experience any more set backs. If I can answer any questions about living with GBS I'll try. Be well!

Welcome Brother Jeff,

I identify with your post for three reasons:

1) We are both new to this board

2) We have "lighter cases"

But thanks to a recent relapse and LJ's post I have significantly down-scaled my expectations.

3) Love of humor - ( Your ALS joke is a screamer. )

Stay frosty,

Dana

I had a milder case too but it still affected me in a major way. This support group has been great in linking me to others with so much experience and knowledge to offer. I am 21 months out from the start of it all and I too had a relapse following a sinus infection about 7 months into recovery. Dana, don't get too discouraged because I recovered from that relapse and haven't had any more even with another sinus infection. I know everyone is different, but it happened for me so I know it's possible. I am doing more now than I ever would have believed. Of course, I can still tell my deficits and limitations but they are so much better than before and only I can tell. I've heard it can be a 2 to 5 year recovery. I am almost at that 2 year mark. Jeff, welcome to the group! Hope you regain the feeling and strength in your legs and feet soon.


To Tarhealing

Congrats on running a 5K. You made the "happy birds" return......

I read your profile...your case was scary and gives us all hope.

Thanks, Dana! At the time, I didn't think I would ever be able to run again. It has been a long road with steps going forward and steps going back. But for me slowly working to rebuild, trying not to get too down with setbacks, and continuing to push myself but resting when needed has led to shorter steps back over time.

I too have been lucky and from joining this group, realising that I am not the only one to develop a milder version of GBS, because from day one I've been described as displaying atypical symptoms, because my paralysis started in my shoulders and worked downwards and that I was able to start to move again at the end of my 5 day infusion treatments just 4 months ago.

I was fortunate in that I got an ambulance to hospital within an hour of developing paralysis, and just a few hours after first noticing my eyesight failing and tingling. The emergency dept had a switched on medico on duty at 4am when I arrived and put me straight into ICU, where the duty medico there was happy to put me onto Octogram infusions even before doing a spinal tap in order to save time. (Lucky he did because the protein count didn't indicate GBS, but electro-stimulation tests a few days later did confirm my condition). So I feel quick intervention was the key to my quicker than normal recovery.

I have however, still got major muscle wastage, and at the 4 month point only about 60% recovered, but having found this group I feel much happier being amongst friends where I can learn and share knowledge. What a great source of inspiration.

I hope more doctors will begin recognizing the varying degrees and symptoms of GBS.

I also had a mild case of GBS on 3-2014 & I still have to use a cane. The muscle & nerve pain is bad so I take Lyrica & Zanaflex. I did 18 months of PT. keeping a positive outlook is crucial b/c setbacks do happen.

I have a atypical form of GBS in January of this year. I have the tingling, numbness, muscle weakness and fatigue. I’m 25 and I have yet to start any form of treatment.

You have a caring Neurologist. I wish I had received that advice long ago. I'm just now starting to reach out for support. I was stuck in the Anger phase. :)


Physical Therapy is basically the only treatment I've ever received but it has been well worth it. I never had a very helpful Neurologist. Wish I had one now. I'm relying on my PT to get me through this again.

It is now 6 months since diagnosis, and even though I had a mild form and was up walking after 2 weeks, my nerves and muscles are still barely responding to reflex taps to my knees and other points in my arms.

My rehab doctor has explained to me that testing reflexes is how she can tell very easily and quickly how I am progressing. The point she made that has made me realise this is a long journey, is that the nerve damage heals at a rate of 1mm per day.

That means that to repair a nerve that goes from say my neck to my knees will take 3 years!

She also explained that until the nerves to the muscles are working properly, no amount of repetitive exercise such as bicept curls or long walks will make the muscles grow back until they are fully connected again and that trying to speed things up will do no good and just cause further tiredness and frustration.

So armed with this info I am just doing normal day to day gentle exercises to stay active.

What have others here found to happen to their muscle tone return.

Thanks for the information, OzGronk! That would explain why I have re-flares when I overdo the running. I'm 23 months out and have regained much of my function and more of my endurance but have had a couple of re-flares over the last year. I knew it could be a 2 to 5 year recovery but I didn't really know what that meant. The gentle exercises and even some shorter runs worked fine because I had worked up to it. Then I pushed over the limit and experienced the weakness in the harder hit areas. My damage extends from my foot to my head so I guess that's a pretty good distance for recovery.

It took about 4 years for me to feel like I wasn't actively rehabilitating. I didn't start the working out at the gym until then. For those first years it was just relearning how to walk and perform everyday tasks. If the 1mm rule is correct, that would make sense. I was paralyzed from head to toe.

I never regained my knee tap reflexes though. My neurologist at the time said that was to be expected. Does your neurologist expect yours to return fully?


Charlotte,

My medico reckons at my rate of recovery I should reach about 80% at the 9 month mark when she next sees me, when she expects to see some reflexes, and from there we can probably chart a course that I can expect to see. She reckons on a 95% recovery in the not too distant future but won't put a time on it.

I think I am lucky as she has taken over from the medicos who initially and immediately diagnosed and treated me, got me back on my feet and handed me over to her and as she trained in Asia, had treated polio cases, which she explained has a similar albeit permanent effect on nerves and muscles so has a good understanding of what's going on.

I hope Charlotte, that you are nearing the end of this uncomfortable journey as 4 years is a long stretch.


Charlotte said:

It took about 4 years for me to feel like I wasn't actively rehabilitating. I didn't start the working out at the gym until then. For those first years it was just relearning how to walk and perform everyday tasks. If the 1mm rule is correct, that would make sense. I was paralyzed from head to toe.

I never regained my knee tap reflexes though. My neurologist at the time said that was to be expected. Does your neurologist expect yours to return fully?


Yes Tarhealing, I too went like a bull at a gate as soon as I started feeling better. But quickly realised I wasn't Superman and that this thing holds some nasty surprises if you don't listen to your body.

The physios quickly told me to pull my head in and take it easy in the early stages, to forget the weights and just use the rubber bands to exercise my limbs and just take normal walks and swims to stay happy, not to rebuild myself as it just wouldn't work.

For someone always keen to go higher and longer, hard to do but my mind took over my ego, and I can handle taking it easy, especially knowing about the slow rate of repair.
Tarhealing said:

Thanks for the information, OzGronk! That would explain why I have re-flares when I overdo the running. I'm 23 months out and have regained much of my function and more of my endurance but have had a couple of re-flares over the last year. I knew it could be a 2 to 5 year recovery but I didn't really know what that meant. The gentle exercises and even some shorter runs worked fine because I had worked up to it. Then I pushed over the limit and experienced the weakness in the harder hit areas. My damage extends from my foot to my head so I guess that's a pretty good distance for recovery.

Thanks for sharing what you have learned about GBS, OzGronk! I'm in an area where little is known about the condition and there are few suggestions for recovery. It's tough to face this thing alone and uninformed. I'm so thankful for the connection to others like yourself who continue to help light my road on this journey!