Dr. Abhijeet! CIDP?

[mrwiggles]

I hope you can help me. I have seen numerous neurologists and so far the only diagnosis that keeps coming up is Essential Tremor + something else.            They say Essential Tremor but also something else, it's the something else that the Dr. cannot figure out.  I was dx with MS 6 years ago. No lesions in brain. Spinal fluid okay. So one says can't be MS, another says it could be. I've had asthma since childhood and have taken lots & lots of prednisone, that is why the other Dr. says it still could be MS and that the Prednisone could be the reason that lesions are not showing. Here is a short version of my symptoms. Deep, achy muscle pain, muscle spasms affect every part of my body (not all at the same time). I have difficulty walking after sitting for a short while. When I first get up in the morning my walking is like a wind up tin soldier. I have tingling from head to soles of feet. Toes wiggle and move without provocation. Loss of sensation in feet and lower legs. Pain in hips. Red swollen and crooked fingers. Meralgia paresthetica in upper left frontal thigh. TMJ for 20 years now. Loud chirping crickets in my ears. The last Dr. said I walk funny. I have had several bouts of optic neuritis.I have great balance problems. Look up = fall down.I have trouble with my speech. Some words stutter others don't come out right. I get occasional electric like shocks in th lower back of my head. I have motion sickness. Can't remember things. Heat saps my strength and when I get really cold my body goes into hyper-shake, totally uncontrollably.
I had a bilateral nerve entrapment release of the femoral nerve about 13 years. Is it possible that this procedure that cuts through the myelin sheath could produce MS like symptoms or CIDP?
I realize that these symptoms individually don't amount to much, but collectively they have caused me to be unable to work any more. Is there some way that you can look at these symptoms and give me something to go on? I just want to be normal again and able to work. Thank you very much for looking over my long list. I am truly waiting for an answer and a diagnosis.

[patsy10]

I'm not a doctor but have done a lot of research since I have many of your symptoms.  The only evidence I see of MS is ON.  You may want to research  lyme disease.  It can cause all of these symptoms, including ON.  A negative test does NOT rule it out.  Also, how are your knee reflexes, hyperactive or hypoactive?  Hyperactive reflexes would indicate central nervous system disorder  like MS.  Hypoactive reflexes would be more consistent with CIDP.  Have you seen an MS specialist?

[mrwiggles]

I had a lyme test run, negative. Don't know the difference in hyperactive and hypoactive. I have not seen an MS specialist. About 2 weeks ago, had pin ***** test, toes, feet, ankles and calves. I did not feel pain from the pricks.

[Abhijeet Deshmukh, MD]

Hello.

MS is a diagnosis of exclusion. It is diagnosed only when all other possible and common causes of the symptoms are ruled out. Optic neuritis is a fairly positive indicator of MS. But you need to rule out any condition which has optic neuritis as a cause. One of them is  the Devic's disease. It is also called as Neuromyelitis Optica. In Devic's, you will see spinal cord lesions as well as the optic neuritis. Devic's is not totally different from MS, but it has a limited course.

What patsy10 meant by hyperactive and hypoactive reflexes was either an increased or a reduced response of the muscles to stimulation. When muscle tendons are given a stimulation, if the muscle contracts / jerks briskly or is hyperactive, it is an upper motor neurone lesion. If the response is hypoactive, it is a lower motor neuron lesion. CIDP is an example of that. Cutting the nerve sheath will not lead to demyelination.

You have motor, sensory and autonomic symptoms. MS can not be diagnosed only from MRI. Hence, it is possible that you have MS and still have a normal MRI. I would recommend a detailed discussion with your Neurologist.

Regards

[patsy10]

One of the ways doctors check your reflexes is by tapping just below your knee with the rubber hammer.  Hyperactive or brisk reflexes will show up when the leg kicks out fast and far (reflex).  Mine were so hyperactive I could have kicked him in the face!  hypoactive or diminished reflexes would show just the opposite response.  The leg would kick out very little or none at all.  Does this make sense?  I would strongly recommend seeing an MS specialist.  This is a neurologist (neuroimmunologist) who specializes in MS and/or diseases mimicking MS.  You can find one at a large, teaching facility.

[mrwiggles]

I can not thank you enough for taking the time to answer my post. I have learned more from your post than from my Doctors here. My reflexes are slow but I did not know that it mattered.
I thank you and Patsy for the information, I will take it with me when I see my Doctor. Again, thank you very much, I now know not to give up on a diagnosis. I will continue the fight.