another undiagnosed thus far....

[Bemep]

Hi. I think I might have MS. I will give you a quick run down. I am curious how many people think they may have MS who do not. I have had issues with chronic pain and this last year has been debilitating. I had an abdominal sacroplexy with mesh last year for prolapse and basically ,/have not been back to work. The year before that I also had a rectoplexy and partial colectomy for rectocele. I have had my share of pelvic organ prolapse but that is not why I think I have MS. I have had horrible pain since the surgery and the reason why is still debatable. I was recently diagnosed with a neurogenic bowel. I am now taking linzess and this has yet to totally help as I still need other modalities to defecate. I have also been incontinent of stool twice in the last month. One time was in my sleep. I found out after the last surgery I could not go again, my rectocele returned. I also have some DDD, spondylolisthesis and a diffuse bulge that could have been explaining some of my symptoms but it doesn't show any obvious nerve involvement on my MRI's. I don't know if the MRI looking for MS would be done differently. I have repeat MRI's coming up. I am requesting them to look for MS and do the entire spine because only cervical and lumbar have been done. The doctors have not been able to tell me why I have a neurogenic bowel.

I also have had the electric sensation in my neck and down my arms. I dropped everything in my hands and just kind of froze. It lasted only seconds but was real scary. This was like a year ago when I was working and I thought it was a result of my cervical spine disease. I am now reading its a prevalant sign. I have been weak and feel like my legs are going out when walking downhill. I have numbness and tingling to my lower extremities on and off and sometimes my fingers which could be my back. But I am getting those leg spasms, where my leg just shakes uncontrollably and stops if I put my arm on it. I have seen this with many MS patients. I also have developed a jerk. part of my body or an extremity will just move or jerk on its own. Its more noticable when I am relaxing. I just finished with 5 days of steroids and noted some improvement, like less jerking, and my pain was better.

Some doctors are so ignorant and don't listen to the whole story. They automatically blame the opiates for my bowels. I have only been on those in the last year and I seriously think there is something else causing my problems. I agree that they can contribute but I have lost any urge. I feel heaviness and pain and know that I need to start working on going. I have seemed to lost that reflex. I have also had MRI of my pelvis to look for any nerve involvement as there was mesh sewed to i t and I haven't been the same. They don't see any kind of culprit. I think that the mesh and surgery may have started a reaction in my body. I am applying for disability and my life has been turned around. At this point its like I just want to know what it is. I also need to find a primary physician because when I went to discuss this with mine she was a new doctor, inexperienced and failed to look at the entire picture. I haven't had labs.

Thanks for listening and I am glad this forum is here.

[ElliotB]

Have you seen a neurologist that specializes in MS?

[lyndacarol]

Welcome to ThisIsMS, Bemep.

Please read the following website thoroughly, watching the videos and possibly locating (library?) the book, Could It Be B12? An Epidemic of Misdiagnoses:

http://b12awareness.org/

[Bemep]

I have not seen a neurologist who specializes in MS. I am working on getting a referrel. Thanks lyndacarol for the information on B12 deficiency. the symptoms don't match from what I have read but it is definitely worth getting tested for. I did not even remember all my symptoms when I wrote this last night. For one, I have always been kind of clumbsy, I am having an obvious issue with word finding and my hearing has gotten worse. I get a ringing in my ears quite frequently and this strange wave like sound when I turn my head a certain way. I also find myself closing one eye to see better when I am tired. The other night my leg became completely numb. Not like asleep, I could not feel it. It was like when I had an epidural for my c section. I didn't mention that I am a 41 year old woman.