Is this Neuropathy?

[SjoDry]

Hi Sjoggie Mates,

Always a new symptom or two. For many months, I have an intermittent tingling & numbness in both hands and up to my elbows. It typically happens at night and I wake up with it. It has been random, and basically just a nuisance. In the last several days, I have been having something weird thing with the muscles in my lower legs. I don't know how to describe it maybe a bit crampy..just heavy & hard to walk. Again, this happens when I wake up & takes awhile before I can walk correctly. Then last night..oh my goodness. I was waked up 2 -3 times with a horrible pain, throbbing & burning in my right arm. it was very painful and I was almost in tears. I have had some numbness in my fingers while working/typing (like a carpal tunnel feeling)..but random & not every day. But that arm pain was crazy. Is this what neuropathy is? I don't know if both muscles & nerves are involved with neuropathy?

I think it sounds like I need to add yet another specialist to my list, after seeing my new Pulmonologist with an upcoming appt.. I did read some past posts. It sounds like many of you are on Neurontin. Is that something that might help with the pain. I am going out of town this weekend to a wedding. I don't want to be dealing with this issue.

Thanks in advance.
SjoDry

[finallyadx]

Hi SjoDry-sory to hear you are experiencing that - it sounds like what I experience and have been diagnosed with neuropathy, but you should get it checked out to verify what it is and start treatment.  I do not take treatment for the neuropathy yet I "put up with it", but I certainly will seek treatment in the future if it continues to progress.  I believe there are some folks on the board who take natural remedies - not sure where you stand on that.  Then I believe I have read that some take gabapentin and some take neurontin.  Hopefully those folks will chime in and give you their opinions.

I know what you mean about adding another specialist to a long list, but it is worth it if you can feel better.

Sending healing thoughts and prayers your way and hoping symptoms improve minimally for the wedding this weekend! 

[Ripvanann]

Hey Girl, it doesn't end, does it? Yes, it does sound like neuropathy, but it also sounds like you might have a magnesium deficiency and/or hypercalcemia.

I would try taking magnesium supplements first. This will help a lot, if you are deficient, with the cramping and weakness. It can also help with your arms falling asleep. The hypercalcemia will cause all of this as well, but rather than seeking out another doc and testing, try the magnesium.

I can't take Neurontin, it messes me up up both physically and emotionally. I take and odd one, but it does help, it's called Trileptal (another anti-seizure drug). I also take narcotics. With all of that, I'm still in a significant amount of pain, but not ready to throw myself into traffic like I was before the meds.

The IVIG is going to be my next step for treating my neuropathy and autonomic stuff. Seeing as you're already doing this and that IVIG is "the big gun" for treatment, I'm not sure what a Neuro would suggest.

As you know, Dr. Nice and Dr. M. were supposed to be meeting with neuros here who would be willing to work with Sjogies. I haven't heard from him yet. Waiting patiently (sort of) .  I will let you know as soon as I hear from him.

Try the magnesium. It seems too simple, but it does wonders and it's quite possible that the IVIG has depleted it somehow, or is keeping you from absorbing enough.

Hope this helps, you have enough going on. Still praying for you every day.
~Andrea

[lighthouse33]

Hi SjoDry:

It sure sounds like neuropathy to me.  I have polyneuropathy and bilateral carpal tunnel in both arms.  You might try what my doc suggested I do and have been doing for five years now.  I wear a carpal tunnel splint on both arms at night. 

I wear the IMAK Hand / Elbow SmartGlove PM on my right arm.  It has the most problems due to my being right handed.  On my left arm I wear the Wellgate for Women Slimfit Wrist Support

During the day I sometimes wear the iMAK SmartGlove. 

I'm on Lyrica and Cymbalta for the neuropathy and I also take Tramadal for pain.  Two supplements I take for it are acetyl l'carnitine and alpha lipoic acid.  They really help.  I found out first hand when I had to quit taking them for a surgical procedure, the burning, tingling, shocks and shooting pians were so much worse. 

i have tremors too and I take clonazepam for that. 

Still most nights are pain-filled.  Wouldn't wish neuropathy on my worst enemy.

[lighthouse33]

Because every peripheral nerve has a highly specialized function in a specific part of the body, a wide array of symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

I have the muscle spasms and I assume weakness.  My neuro says all of this is due to the Sjogren's.  White matter lesions in the brain.  Tremors are secondary due to autoimmune disease. 

[Scottietottie]

Hi 

How are your Vitamin D levels?  Low vitamin D can contribute to peripheral neuropathy.

Take care - Scottie