Any thoughts?

[Moonmark]

Hello- I have been posting on here for a year and a half, previously under the username of SandraD, but have not posted in some time. Changed my username it to moonmark when David brought up some security issues.

I have an almost two year history of muscle pain, off-and-on twitching, some weakness, and worst of all, profound fatigue, but no clue as to a diagnosis. The pain comes and goes and is often associated with me using a muscle. It seems to be focused in the neck, arm, torso/chest area right now. For example, after trying to pick up my daughter, who weighs 30 pounds, I later (an hour or so) developed some kind of spasm-like pain in my chest area, around the ribcage, and it was hard to take a deep breath. The other day, with great difficulty, I tried to lift an overhead attic door (pushing it up) and for the next few days I had a lot of pain and stiffness in my arm and neck. Simple activities such as raking up a small pile of leaves wipes me out and I have to lie down for a while.

I have also had some trouble getting bowel movements out-- please excuse me if too graphic-- but I kind of have to push on my butt on one side to help get them out, like the muscles there are not working right to push them out on their own. My posture has changed a lot and in pictures you can see my shoulders dropping, head jutting out a bit, and I am kind of tilting to the side a little bit, in the torso area. I feel "uneven," if that makes any sense.

I had a normal EMG in June 2009 on two legs and one arm and was supposed to be follow up with the neuro every six months because the neurologist could not "definitively rule out a neurological condition." I did have a brain MRI that had a few scattered "cystic-like" lesions, but the neuro-- a specialist in both MS and ALS-- did not think were consistent in location and size with MS.

I got sick of going to the doctor, so I have muddled along for some time now, but am due to see the neuro again in a few weeks. I do not believe I have ALS at this point, but there is something wrong with me and I am not sure where to go next. I had one visit with a rheumatologist early on and he did not have any answers.

The same problems continue and lately, I have had blood in my urine-- I guess for a few months now. I was sent to a urologist and they took a look at the bladder and kidneys and everything is normal there. so where is the blood coming from? It is mostly not visible, occasionally pink-tinged, but it has been in every urine sample they have tested for the past three months. There is no bacteria present and the doctor has drawn urine directly from the bladder through a catheter.

does anyone have any thoughts on whether this blood in the urine, both microscopic and very slightly visible, may be related to the muscle problems and fatigue I have had for nearly two years now? I will tell the neuro about the hematuria (blood in the urine) and hopefully he will have some ideas, but just wanted to see if anyone has experienced this in connection with whatever is wrong with you?

Best regards-

Sandra

 

[Moonmark]

Forgot to mention--- when I last saw the neurologist a year ago (didn't keep up with the six month appointments), I had deep tendon reflexes of 3+ and spasticity in the legs. I also have some urinary urgency, sometimes outright incontinence.

thanks-

Sandra

 

[Alyoop]

Moon mark, You need to go back and see your neurologist. Something is going on and you need to get it sorted. It sucks seeing them so often, but you just have to do it for yourself. The haematuria cannot just be left, and now that you have urinary incontinence things are progressing. urinary problems are common in MS and other things.

Have you had a full spinal MRI, to check out your cord? If your last MRI was in ?june 2009, then you probably need to have another one to rule out MS again. You could have a spinal MS lesion. I have some MS patients that have taken along time to get diagnosed, so keep on trying. Your neurologist would have wanted to review you every 6 months, because he was waiting for your condition to "show itself"

Off you go to the specialist ASAP.
Aly

 

[Moonmark]

Hi Alyoop--

thanks for responding. I am scheduled to see a physician's assistant in the neurological office later this month. I am definitely going to ask him whether there are any particular muscle/neuro disorders that can can cause blood in the urine, etc.

I did have an MRI of the cervical spine a year and a half OK and there were no lesions there. I cannot recall exactly, but I believe the neuro said that is mostly where MS lesions occur?

As for the urinary incontinence, it is really more like severe urgency and I sometimes do not make it to the bathroom in time, rather than outright "losing it" without any warning.

anyway, thanks for your suggestions-

Sandra

 

[rose]

Sandra,

Sorry you're having more issues. It sounds like you need to get back into a more proactive mode in searching for answers.

One thing to keep in mind is that everything might not be related.

I really wish I had something in the way of insight to add.

 

[limegreenphysicist]

This sounds so much like MS its odd that they have not sent you to have a T7 scan. Sometimes the T3 doesnt catch the lesions in order to receive the diagnosis. Have you had the spinal tap? If not that wouldve been my next call right after the suspicious MRI came back.

Kelly