Posted 9/3/2015 2:14 PM (GMT -7)
I am new to the forum. Tonight I found this wonderful website and it's been comforting.
Please allow me to tell you my story:
At the beginning of 2015 I was hospitalised for a drug-resistant bacterial infection in my bladder (Acinetor bactor Baumanni. I must have picked this up from my Grandfather two years previously in ICU, and because I have structural bladder problems (from a ureter reimplantation + kidney problems from years ago), the bacteria must have found a home in my bladder. Anyway, I was put on Gentamycin (a very strong anti-biotic) for 4 days on an IV. I lost some hearing after this, and for 2 weeks I was very, very weak.
Flashback note: before the infection, I had been experiencing memory loss, concentration problems, extreme fatigue, tingling legs and arms (like "restless legs"), blurred vision and a feeling of vertigo/pressure in my head. I had some trouble keeping my balance, and even dislocated my patella from suddenly falling during dance rehearsal. I didn't take it too seriously, because I'm on meds for chronic allergic asthma and severe allergies, so I thought that might be it. Also, I worked 16 hours a day, and danced professionally, so I thought I was tired. I also had Epstein-Barr when I was 18 (currently 23), and I knew it often came back, and left me fatigued.
Back to post-infection:
3 weeks after my hospitalisation, I had an acute neurological "attack". It had been coming since my time in hospital, but culminated one afternoon. My legs felt "funny", like restless legs, but when I touched them, they felt numb (like when you sit on your bumm too long and it loses feeling). After a while, I had this in my hands and arms too. Then my motor coordination went. I was falling over and I could barely walk. My muscles started twitching all over like crazy. Luckily my mom was with me, and she took me to hospital. I had a very poor experience with the in-house neurologist, and the next day I flew to my hometown and was admitted in hospital there. My neurologist found that I have hyper-reflexivity, joint pain, proprioception difficulties, balance difficulties, extreme neural pain (it comes and goes depending on how active I was during the day), numbness and motor coordination difficulties. And, of course, memory loss and poor concentration. After a lot of physio and rest, these symptoms have improved, but they are still there. I had ALL the tests done, and I am positive for no autoimmune or other disease. My MRI for brain and spine are clean. As a preliminary diagnosis, my doctor has said MS, and he has given me Modafinil for the memory loss. If I have a "relapse" he will put me on steroids in hospital under supervision. However, I am acutely aware that this is a very difficult diagnosis, and it could still turn out that I have something else. Or that something caused an acute peripheral neuropathy. For now, we don't know.
For 10 months I could not look after myself, I can no longer dance, and my life has come to a complete stand still. I am in total shock. Tonight it hit me again, and I am so upset. My family has been through such difficult times financially and otherwise, and I feel like a burden. I'm trying my best, but I feel very alone, especially because I'm not getting "better". What I have is not like a flu.
Anyway, apologies for the sob story. I actually would like to hear if anyone has tips on dealing with fatigue? I used to be ultra fit and strong, and it is a huge comedown for me when I get so exhausted.
Many thanks in advance,
L from South Africa