Anyone else experiencing...
 

Hi Friends! I just need some input from people who know and understand what this disease does to us. At my last neurologist visit he listen quickly to my complaints, but assured me that most idiopathic neurologies are all treated to same....Lyrica. So far the 300 mg. seemed to be working until now. I am experiencing more numbness in my hands and fingers. I feel my fingertips could just pop off my fingers. At the end of my visit the neuro did agree to an MRI of my head sense I finally got him to listen to my complaint of pin pricks around my face and mouth. These feelings have now started all over my body...upper legs, arms, torso.' Has anyone experienced the feelings? I go on the 27 to have the head MRI discussed with me,
300 mg of Lyrica seemed to be woking, I don't have the severe sharp shocking pain now.. I do have hot pinching sensations all over my body. Should the Lyrica dosage be increased?

I have also had an MrI on my feet/ankle to be told that pain is arthiritis and I need to wear a costume fit orthotic. Which I don't think my insurance will pay for.

Thanks to all,
Sheila

It is good your doctor is going to do an mri of your brain but have you had one of your spine?
I am not sure about the Lyrica dose but sometimes a combo of meds can help too. Can your neuro refer you to a pain doctor? I am not a fan when a doctor just treats all people with a dx the same. Yes we have things in common but we all respond different. My best pain doctor after a few was one who looked at me as an individual and my symptoms,pain,etc.
The orthotics and insurance coverage may depend on your company. Could you call them on Mon? My mom does not have this issue but she has custom orthotics for a problems and they have helped her.

Daniella, yes I've had an MRI of the lower lumbar. Found a few bulging disk, but nothing outstanding. Also was told I have arthritis in lower back...I could have told them that. I've been told that 350 mg is a fairly low dosage, but I'm glad I am being increased slowly. These new little symptoms (hot pinching feelings) concern me. I don't understand what they are. Ontop of that my fingers and hands are worse.
On top of all this, my orthorpedic just told me my feet MRIs looked good except I do have arthritis in my feet. She wants to put me in the orthotics.

It would also be a good idea--
 

--for an MRI to be done of the cervical spine, if one has not been--problems there can be reflected to any level from the neck to the feet, depending on what might be compressed. (Of course, there's also the possibility that your spine or nerve roots are not involved at all, and this is a true peripheral problem.)

What does it mean "a true peripheral problem?" The only MRI of my back has been of the lower lumbar. I am to the point of not wanting to spend anymore money on tests! What's the point, it seems all treatment is the same. However, deep down it is frustrating not knowing the cause of this life changing "disease."

Did you have an injury or accident and is that why you have a bulging disc?
Are they going to put you on meds for the arthritis?

I am diagnosticly tested out for now so the why behind my conditions is unknown. I do feel though it is important to rule out all possible conditions because some that are caught early can be treated better. Also from what I have been told that if you can find the reason behind all this it is easier to treat. Now for me I have RSD and PN but since I don't know the cause it is about pain control and treatments. So if you get to the point where you are dx tested out you may want to look into pain doctor etc.

Just that--
 

--one of the problems with neurological symptoms is that the exact same subjective impression of symptoms can ultimately stem from problems with the spine or nerve roots, or from problems with the peripheral nerves--those outside the central nervous system (brain and spinal cord)--or even both simultaneously. Therefore, unless there's obvious evidence--spinal compromise due to trauma, for example--it often takes a considerable amount of testing to find a cause, if one can indeed be found. (It's very much a process of elimination/exclusion.)

A lot of us like to use the Liza Jane spreadhseets, which are about as comprehensive a listing of testing for neurological symptoms, based on type, that can be devised (and the spreadsheets are also good for tracking results over time, to look for patterns):

www.lizajane.org

No, Daniella, I've had no injury or accident to my back. No clue where all that came from either. As far as the arthritis, my ortho is very conservative in her treatment. The only medication she is recommending at this time is glucosamine chondrontin (sp??) and orthotics. I'm ok with that because honestly my ankles and feet only hurt when I walk..HAHA. If I step just right I feel as if a bone is breaking in that area. I literally see stars but it goes away momentarily. Just hoping it doesn't happen in both feet at the same time because I know I will go to the floor!

I am very fortunate that at this point in time I am not experiencing much pain with the PN. So I guess the Lyrica is working. My toes and fingers feel cold and numb mostly...like frost bite might feel. But these stinging, pinching things that happen all over my body (face, neck, legs, arms, torso) are quite annoying. The weirdest thing is the numb feeling I get around my eyes and eyelids. I get the results of the MRI of my head tomorrow!

Thank you for listening, my husband isn't understanding. He wants the person he married 3 years ago back. I can't blame him because I want her back too, but I didn't ask for this!

Glenna, thank you. I actually found the Liza Jane spreadsheets on this site before I went for my first neuro appt and took them with me. Another helpful tip I learned from this site was to ask for a copy of all tests results before leaving the dr. office. I keep everything in a notebook. The people on this site are absolutely wonderful!

HI Sheila, I too have had prickles in my face. It is very scary and annoying. You are not alone. I just had an MRI of my brain also. I don't know the results yet either. I am a teacher also. I am still nervous about going back. Are you still planning on going back? Best of luck sheila!! Danielle