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May 8, 2015 at 4:17 am #1369KimGuest
My husband was diagnosed with MSA about 6 months ago. They first diagnosed him with a stroke, then upon seeing other neurologists and a lot of tests, it was determined that he has MSA. One side of his body is affected more than the other. He has gait in his walk, has trouble with mostly one hand, drools, sweats a lot more, etc. But he also has moving pain in his back and legs. This pain is taking over his life. The neurologist said this pain isn’t from MSA. Have your loved one’s had pain in the back and legs too? Is this pretty common?May 9, 2015 at 7:37 am #1370Lorena WongGuest
My dad is diagnosed with MSA back in 2008. He is pretty much bed bound now. But he doesn’t have any pain at all. Occassionaly he has complained that his back has some kind of discomfort but I am sure it has to do with his laying on one position of a long time. Hope this helps. Thanks LorenaMay 13, 2015 at 1:34 pm #1371Debbie TempletonGuest
My hubby 43 was diagnosed last year and has most of what you are talking about. I am truly sorry to hear you are also going through this horrendous illness. Fatigue, hip pain and coat hanger pain is very bad all the time. Ian can not walk properly either. His right side is very bad and his left side is going now to.
DebbieMay 14, 2015 at 10:12 pm #1372BronwynGuest
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. BronwynJune 10, 2015 at 10:25 pm #1373JulieGuest
My husband turned 50 in January & was diagnosed in March with MSA-C. He was initially diagnosed with Parkinson’s in 2013. He suffers with back & leg/foot pain on his right side. The pain is taking over his life also. His neurologist has told us it’s not from MSA. No one seems to have any answers to why this is happening.
He has gait in his walk, & is finding it more & more difficult to do anything with his right hand.
He is booked into hospital next week to have a Supapubic Cathether inserted. He has developed breathing problems & often has choking episodes at night. He has disrupted sleep most nights, acting out nightmares, talking in his sleep etc.
JulieJune 13, 2015 at 5:21 am #1374KimGuest
Julie, I am so sorry to hear your story. All to familiar. And very scary for the patient and for us care takers. I am finding more and more patients with leg and back pain. My husband is getting cortisone shots in his spine but they have not helped. He gasps a lot now. I can see him progressing very quickly. Sounds like your husband is progressing even faster. Keeping you in my prayers.June 17, 2015 at 5:28 am #1375KimGuest
I have heard of too many MSA patients having leg & back pain. MSA is a loss of function and death of different types of nerve cells in the brain and spinal cord. It only makes sense that if it affects the spinal cord, the patients would have back and leg pain. The neurologists need to listen to patients and realize there is definitely a connection between MSA & back/leg pain.September 12, 2015 at 4:41 am #1376vickyGuest
Hi everyone! I feel for everyone out there with msa. Iam a mom and a caregiver to a 18 yearold son. Theres not one day i dont shed tears for my son that i see suffering every day. He had a brain tumor at age 3 removed w no chemo n no radiation. His left side was affected had to terach him to walk sit n crawl all over again. Over the years he got better but i noticed about grade 6 his right side started weaking tremor in his right hand always fatigue low blood pressure. He had a stroke a year ago after exercising. But then was diagnosed w olivopontocerebellar degeneration. Known as msa. Hes finishing his last year if school is always in pain stiff muscles very tired mood swings are horrible. His digestion is very poor did all kinds of tests on stomach cant find anything. He cant eat as he wishes does alot of gasping for air body leans to the right n has leg n back pain. Anyone out there with this disease at such a young age? Doctors r no help. They just ssy look it up on cimputer. My son does not know what disease he has keeping it from him so he doesnt fall into a deeper depression.September 18, 2015 at 3:31 am #1377KarenGuest
So sorry to hear of your husband’s trouble. My husband too has MSA-P. He has no pain in his legs but horrible “spasm pain” in his lower back. Have the doctors tried anything for your husband’s pain? It too has taken over his life. It is worse when he moves. Has anything helped? My husband has has injections, Botox, multiple medications and just recently had a Baclofen pump inserted. He did well with the trial but the Baclofen pump is not working like we all hoped it would. Damn disease!!!!June 27, 2016 at 5:59 pm #2163oakley encounter sunglassesGuest
Your post is very helpful,it give me much help,thanks a lot!
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