#1372
Bronwyn
Guest

Hello everyone, My partner has just been diagnosed with MSA-C. This has taken 6 months to date with multiple blood tests, lumbar puncture , 3 x MRI brains, pet scan and the list continues. He is still currently in hospital in Perth, WA, Australia. He turned 50 in April this year. We first noticed symptoms about Sept 2014- but he has rapidly gone downhill… speech difficulties have become worse with associated swallowing difficulties, clumsiness has progressed to difficulty in walking and especially stairs and lifting his legs, more frequent urinary problems, night sweats, temperatures, coughing and what I call REM of the body during sleep, His arms, legs flail and he speaks but you can’t make out what he is saying. I have to wake him to stop them and then he settles back down for a while. I am not quite sure what my post will achieve but if it helps/assist another person then I feel we have helped. He also has severe lymphedema of one leg from the knee down. Could this relate to the side of the brain more affected – no one can tell us. The headaches have also started. Panamax seems to be the only drug that offers relief to the “dizzy’ feeling, the headaches, the sweats and temperature. The hospital want to take him off it in case it is masking other symptoms but my thought is “what the hell” if something works and they are not offering any other treatment/ no treatment & or other drugs why not take something to makes life that little bit more comfortable and bearable. Like everyone one else we seem to come up to a brick wall with respect to “experts” in this field of neurology. I would be very interested in any specialists or recommendations for specialists in Queensland, as that is where will be be moving back to in the near future. I have tried to obtain yardsticks as to what to expect in the future but the alas the answer is the same… different rates of degeneration for different people. All and advice will be gratefully accepted. Bronwyn