Reply To: Residuals? 21 years later?

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?