Change in sx

[mamafigure]

First, I apologize for posting again, but since my neurologist has dismissed me, I didn't know where else to go.

I saw my neuro shortly after my last post.  Since he says my tests are neg, he said that it must be anxiety related and that he doesn't need to see me again. Truly, I am not generally anxious (I have lived through severe health problems of 1 child that was "supposed to have died" 12 years ago,and also the sudden death of another child 6 years ago, plus other stressful thingsin the past, so why would stress cause this now?)

Reminder, had several MRI's, all neg, LP OK except for protein of 60.  ANA mildly pos, then neg, all other blood tests seem ok. I have hypothroidism.

You suggested CDIP, and sx seem to match, except reflexes are elevated.  (One record says 3)  I mentioned to neuro, he said impossible to have CDIP with this sx.  I asked about an EMG (not that I like tests at all) and he said that would be appropriate IF I had CDIP, but since I didn't...

New sx.  tremors seem to be diminishing quite a bit (these were 1-sided) and being replaced by numbness, pain, heaviness and pins and needles.  Ringing in ears prevelant at bedtime.

Thanks again.
mamafigure

[CCF-Neuro-M.D.-JT]

The extensive testing which has all come back normal should be somewhat reassuring that nothing serious is going on that needs emergent attention. However, if you continue to have symptoms that are affecting your day to day life, then one of two things should be considered. One, start treating the symptoms so that you can function. If the tremors are what's called benign essential, then you can try medications to bring them under control. Neurontin can help with the pain and numbness. Benadryl (if ok by your doctor and does not interfere with any meds/allergies/etc...) at night will help you sleep and may/may not help with the ringing.  Or two, continue trying to find an underlying cause by seeking a second opinion from a neurologist at a major academic or clinical center nearby. Bring your films for review and they will decide on need for further evaluation with EMG, or other imaging studies, etc...Good luck.

[mamafigure]

I'm sorry that you have the same symptoms.  Supposedly CIPD is dx mostly with a LP.  Excess protein can be a determiner.

In my other post, seeing another neuro was mentioned.  How was not determined.  Good luck to you.
mamafigure

[sharon123]

Hi- I've had many of your symptoms for the past year and have had every test possible. All negative. I also have hyper reflexes and feel like I'm going to jump out of my skin if someone hits my leg just right. The neurologist that did my lumbar puncture mentioned that it might be CIPD but said my spinal fluid would not show anything regarding that. I don't know how that is diagnosed. Do you also have bladder problems? This is my newest symptom and most frustrating. My symptoms seem to come and go, are yours like that? I'm also hypothyroid, maybe this has something to do with it. Although the drs. say that if you're on the right level of medication, you shouldn't have hypothyroid symptoms. I have ear ringing at various times also and I know this is a hypothyroid symptom but can also be a nervous sytem problem. Who knows? I'm definitely thankful it's not MS or anything too serious but it's frustrating not knowing what it is or how to fix it.

[sharon123]

Yes, I saw in a previous post that excess protein was supposedly a determining factor but the neuro that did my LP said that it wouldn't show up in the spinal fluid if I had CIPD. It must not be the only way to diagnose CIPD, I just don't know. As for my other questions, do you have symptoms that wax and wane too? Bladder problems? Just comparing notes here. Thanks and good luck to you too.