Thanks for keeping us posted on your latest developments. So sorry to hear about your condition at 29 years old. When I read about your status, I feel very fortunate that I was able to recover from GBS (complete paralysis) with only foot drop in both feet. I hope you will get better over time with the PT and crutches.

I also want to thank you for providing those links at the bottom of your note. With some searching, I was able to find a book that is available on the web (free for downloading) celebrating 100 years of progress on GBS:
http://eprints.gla.ac.uk/136380/1/136380.pdf – lots of interesting & useful information – especially for someone like me who got GBS in 1972!

And on a similar note, there are Youtube stories of people who have had GBS recently. What is interesting for me is that we had no cameras documenting my GBS. But now with cell phones, family members can document the entire GBS story. Of course, these are selective samples – not representative of the GBS population. Nevertheless, I was able to “relive” my story through other people’s stories and actually see what was done to me (e.g., tracheotomy) through this “new” technology. I have only looked at a few – here is one story: https://www.youtube.com/watch?v=VWvrHhs2jps

Let’s hope for a good year for you.

I am sorry to hear about your depression. And I understand how they came about. Not knowing about the details (your age now and when you got GBS), it is hard to say something constructive. But do not lose hope. As noted above, I had GBS in 1972 when I was 21 and have had a wonderful life. It was not the life that I had imagined. For example, I participated in over a dozen sports before GBS. After GBS, I could not run, so those run-oriented sports were gone for me. I tried cross-country skiing, but that did not work (my weak ankles and foot drop in both feet did not help). So, I adapted to my new life. I focused on my work and family (even sharing a Nobel Peace Prize with Al Gore as a member of the Intergovernmental Panel on Climate Change). And I found a group of people enjoying birds – so I became an avid birder.

But some days are better than others. I would concentrate on the good days and focus on what makes you fulfilled and even happy. I know nothing about depression, but I hope you can overcome it through therapy, pills, exercise, family, etc. Just try to enjoy your new life – not what you had imagined, but it is what it is. Good luck!

I saw my neurologist – the same one that I saw 2 years ago. He felt that everything was fine – my weakness in legs was probably due to my inactivity after I had fallen and fractured my fibula. My blood was tested for lots of stuff to see if there was anything else that might explain the fatigue. But the results were all positive. But he did suggest that I start using the AFOs – which I started today. They do make walking easier. So I will give it a try.

BACKSTORY:

I had GBS in 1972 when I was 21. I was fortunate in that I was living in Trenton, NJ when I became ill – and in less than 24 hours I was at the University of Pennsylvania’s Medical School Hospital – at the time, a central place on the East Coast for GBS patients. I DID NOT have plasma exchange OR hemoglobin transfusion/Ivg treatment. I was monitored closely; in a few hours, I had a tracheotomy in early evening – because I would not be able to breathe – which did occur around 2 AM. I was in the ICU for 3.5 weeks and in the hospital overall for 3 months. I was then able to go home and then go to a nearby facility for Physical Therapy (PT) for several months. This all occurred in March-August time period; I was able to go back to college in September, using braces. I graduated in December 1972.

I then went to graduate school and stopped using braces, even though I had severe foot drop in both feet (but nothing else!). I then worked at one job for 35 years and raised a family of 3 boys with my wife.

While I could not run anymore, I remained active – mainly hiking (and some swimming) and birdwatching.

In the last few years, I have noticed more problems with my balance – particularly, my ankles are less stable. After falling a few times and visits with a podiatrist, I have started using a small ankle brace one one ankle – which does give me more stability. I do have AFOs for both my feet – just in case – in the closet for now. My knees are fine, but I am walking less miles. And am getting more tired each day (but as a 67 year old, that is expected).

REGARDING YOUR SPECIFIC SYMPTONS:

– a warm water sensation running down my left leg [this was leg that had the demylination, interestingly enough] – NO

– numbness and tingling in my feet – Occasionally. EXCEPT: Two weeks ago, I could not put weight on my left foot – after getting an X-ray AND MRI – nothing broken and no damage other than degeneration (I have arthritis in both feet; I have fallen twice – broke my left foot and later broke my right fibula – but am “fine” now_

– a “crawling” sensation that usually starts in my head – NO

– lower back pain – YES (but I attribute that to lifting my twin boys and walking with them for awhile while they were 3 years old)

– urinary incontinence – occasionally

– extreme fatigue – occasionally – but usually due to a cold or a long walk

– bouts of muscle weakness in both legs that have affected my ability to walk long distance: YES! – I am going to see a Neurologist in early January to see what this is about

I have tried to find doctors or people with a long-term history of GBP but with no success – until I randomly found your note. I wonder if there are books/reports/publications about people who have had GBS for a long time – do you know of any? Or Doctors who have seen GBS patients for a long time?