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CIDP? Spinal Tap? Quix- If you could help I would appreciate it...
by overthis, Jul 03, 2007 01:41PM
Hi Quix and Everyone else-
About a month ago I posted on here regarding MS like symptoms with clean MRI's. Well I have had new MRI's done (5 now brain, cervical, thoracic, lumbar, right shoulder on a 3T!) and for the most part they were fine. There were no lesions, however there was a torn rotater cuff in my shoulder (he did my right shoulder b/c my arm was so weak) and what strikes me and him as wierd is that there is a develepmental sac at the very bottom of my lumbar spine. Does anyone know anything about what that is? I heard all this via the phone. He doesn't think it is related because of my weakness in multiple muscles so he is sending me to a neuro that specializes in CIDP.
Basically this has been going on for two years. I am a 22 year old female who was very athletic and in shape and now I can barely lift my muscles on my right side or hold resistance (was my stronger side at one point). I have twitching and tingling as well (but rest definitley seems to help). Mainly my muscles (and my neck) feel like dead weight. They feel tight and have a painful ache to them. My reflexes are gone everywhere but my feet and I have neuropathy in my hands and feet.
I am trying to get an idea of what my appointment with this specialist will be like as well (my sister might come from 4 hours with me if it is needed). It is next Wednesday and my last neuro said he would rather this specialist take care of the spinal tap and EMG. If I am to get a spinal tap how long does it take to get in to one? A day, that day, a week?
Uggh... I'm back at the frustration point again (it is quite a rollercoaster ehh) and would love anyone's feedback...
About a month ago I posted on here regarding MS like symptoms with clean MRI's. Well I have had new MRI's done (5 now brain, cervical, thoracic, lumbar, right shoulder on a 3T!) and for the most part they were fine. There were no lesions, however there was a torn rotater cuff in my shoulder (he did my right shoulder b/c my arm was so weak) and what strikes me and him as wierd is that there is a develepmental sac at the very bottom of my lumbar spine. Does anyone know anything about what that is? I heard all this via the phone. He doesn't think it is related because of my weakness in multiple muscles so he is sending me to a neuro that specializes in CIDP.
Basically this has been going on for two years. I am a 22 year old female who was very athletic and in shape and now I can barely lift my muscles on my right side or hold resistance (was my stronger side at one point). I have twitching and tingling as well (but rest definitley seems to help). Mainly my muscles (and my neck) feel like dead weight. They feel tight and have a painful ache to them. My reflexes are gone everywhere but my feet and I have neuropathy in my hands and feet.
I am trying to get an idea of what my appointment with this specialist will be like as well (my sister might come from 4 hours with me if it is needed). It is next Wednesday and my last neuro said he would rather this specialist take care of the spinal tap and EMG. If I am to get a spinal tap how long does it take to get in to one? A day, that day, a week?
Uggh... I'm back at the frustration point again (it is quite a rollercoaster ehh) and would love anyone's feedback...
I am a 26 year old female. I have been having a lot of muscle problems since the birth of my son back in November. I have numbness and heaviness in all my limbs (started with the left leg, then left arm, and recently started in the right side too). I had two EMG/NCVs. One on my left lower extremity and lower back and every muscle he tested demonstrated nerve damage. I was told three nerve groups compensated for one major nerve. The other was on my neck and upper extremities and the neurologist (a collegue of the first) found damage in a nerve running through my elbow.
Two gyns from the same practice want me to be tested for MS, but I don't know why the neurologist I'm seeing hasn't tested and seems to believe this is not it. He seems to want to rule everything else out first, but can't get over the fact that all these symptoms started after the birth of my son. (14 hours back labor and an emergency c-section).
I too was an athlete before all this happened. I'm just looking for new directions and new avenues to try to find out what might be wrong, and what you wrote sounds a little similar. All my MRIs/X-rays/and CT scans come back normal, but not one of my two EMG/NCvs came back normal.
Overthis - As you know the MRI are typically negative in CIDP, though they can show some non-specific white matter changes. Your diffusely positive NCS's would be characteristic if they showed significant slowing of the conduction velocities. Do you know? You need to get the hard copy of the report.
About the developmental sac in the lumbar region. That is not descriptive enough for me to know what it indicates. Developmental abnormalities are not unusual in that area. They are usually assymptomatic, and it would NOT account for your upper extremity problems.
As for seeing the specialist neurologist. He will want to see your timeline write up of when and how your symptoms appeared. It should be in short paragraphs with the dates leading the paragraphs. Not too wordy, but descriptive enough so that it explains the problem, for example.
"November '06 - Right hand began to feel weak. Couldn't grip things that used to be easy to hold. Noticed increased weakness right hip flexors. Couldn't lift foot to step on stairs. Both problems last for 5 or 6 weeks."
Something of that sort.
You will need a spinal tap. In CIDP it will usually show elevated protein. He probably will schedule that test. You will want to be well hydrated and stay FLAT for at least an hour -whatever they say. Bring a caffeinated soda to drink.
The vast majority of taps do not cause problems. You hear about problems here because of the type of site it is. People don't usually log on to a neuro site to exclaim that their spinal tap went well. lol.
I continue wishing you the best. I'm spending most of my time over on the MS site - which I think should include CIDP. It's a demyelinating process like MS, but of the peripheral nervous system. It would be a much better diagnosis, though, because most forms respond well to treatment. That should be encouraging.
Quix
If your MRI's were done with and without contrast and were negative. The doc's need to proceed with the workup depending on what they found on physical exam. Do you know if they found any abnormalities? Did they document muscle weakness? Are there any areas of abnormal sensation?
What were your reflexes like? Hyper or decreased/absent?
Any other abnormalities like a +Babinski or a +Romberg (balance with eyes closed) or problems with finger to nose or with alternating hand movements?
There is a group of nerve disorders called CIDP - Chronic Inflammatory (or Immune) Demyelinating Polyradiculopathy. These often follow an infection or vaccination. I'm not sure if they are more common after childbirth. Most auto immune disorders are. The nerves that are involved are the peripheral nerves. The ones that have left the spinal cord. They suffer demyelination -similar to MS. The most common form presents in the lower extremities together and progresses to include the arms, but some forms present the opposite was and are not symmetrical. Some forms are purely motor and some include sensory abnormalities. The MRI's are usually normal or near normal. The tendon