Living with Neuropathy - Welcome to the group

Wondering if anyone else feels like they are carrying a dead leg around to the point of madness?

i had Trigemial Neuralgia in 2021 and was taking Carbamezapine and Indocin. It went away during the time I am taking. But on the 3rd week i developed severe allergy and it was a horrible experience. I had it for almost 1-1/2 months and i can not sleep becasue it was very itchy all over my body. I have seen an allergy/skin doctor....they even took a part of my skin to test. Came back that it was drug eruption from "Carbamezapin". It slowly went away. My nerve pain goes back and forth. It will go away for few months then came back again. When my husband passed away in June 7 . I developed anxiety, mental and emotional distrubance, stress so my nerve pain came back. I am now taking Gabapentin 300mg 3x a day and Phenytoin 100mg 2x day that were prescribed by the previous neurologist who retired. The nerve pain usualy trigger when I talk loud or longer. Sometimes brushing teeth or washing my face or simply biting hard food. It's always bothering me because the Rx seems not helping me anymore. My neuroligist said that it doesn't seems like TN so she asked me to go to my PCP. She said maybe go see ENT or my dentist., I did but the xray on my nasal is okay and my dentist did take ultra sound of my teeth and it looks okay too. I had one tooth that has been bothering me so i requested him to pull out. It was okay for awhile and the trigger stop. But after few months it came back again. This really is bothering me. I decided to see another Neurologist since the previos one already retired. He said my issue is not TN but "SUNA" and also told me that "You came to the right place. Don't worry I have seen many patients like your issue and I will take care of you" then followed by telling me that only 3 doctors in Oregon are treating this kind of disease and he is one and mentioned the names of the other 2. All 3 of them are from OHSU. Actually he wrote an article about this. Then he prescribed LAMOTRIGENE start with low dosage 25mg for 2 weeks, then 50mg for the next 2 weeks , 75mg for another 2 weeks then 100mg on the last 2 weeks then go back to see him. The reason he start with low dosage because i mentioned that i had allergy on Carbamezapine . He said the new Rx is a good one. I took the Lamotrigene for 2 days. Last night I feel something was crawling all over my scalp. I thought it was an insect but turn out it was like a needle/electric shock all over my scalp. Every time I touch it was very painful. I did not take a shower. Then I took Gabapaentin and Phenytoin before I go to bed and it went away after few hours except the right part of the scalp down to my forehead so I stop and just go to sleep. When I woke up and touched it, It was not so bad but late in the morning it came back. I put ice compress for at least half hour and it went away but came back again. I called my neurologist and sent him email on My Legacy Chart to let him know my concern but with back to back patients he is seeing he might run out of time to respond. I prayed to God before I go to send me to the right doctor that can treat me correctly but i Do not know yet because It' ]s just 3 days. I was excited that maybe this neurologist will find the right way to treat my nerve pain so i can live a better life. I am not so sure if this is because of the new Rx or something else. Usually it only took few seconds and it will go away. This is the first time that it lasted a day. Wonder if anyone else have this kind of issue. How do you shanpoo your hair when you can not even touch your scalp. Please help me and give me some advice on how you manage to handle this trauma. Thank you and I hope to hear a good response from anyone who joined this site. Here is one of my favorite message to you "Put your Faith in the promises of God no matter what." God Bless you all.

Thank you Ray!

Thanks for the references

I had ACDF surgery a couple of months ago and have noticed slight improvement in balance.

Yes I had ten therapy sessions after surgery and not sure how much this helped. However I think you are correct that more exercise might help

Sure do both of them

Trouble is I forget to pick them up sometimes and fall

Hi @courtniepeacock, I would like to add my welcome to Connect along with @wood and others. I'm guessing you don't have any pain with your leg but it just has no feeling or numbness. Have you been diagnosed with neuropathy? Is it just one leg with the symptoms?

Hi @susanacary, It's been awhile since you last posted. I'm sorry to hear you have been struggling with Trigeminal Neuralgia. I'm wondering if you might find the following discussion helpful to learn what others have shared.

--- Trigeminal neuralgia: What helps stop the pain?: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/

If you can't get in contact with the doctor or neurologist to ask about your concern with the new drug, can you check with your pharmacist?

Hello my name is Tammy, I had ioipathic neuropathy for about 12 years and just recently I found out I need a Total Knee Replacement and I’m somewhat worried because having neuropathy. I don’t know if it’s going to make my neuropathy pain worst after my Knee Replacement. I was wondering if anybody is going thru anything similar to what I will be going thru. I truly scare to have this Knee Replacement. I would like to hear back from anyone that going thru anything similar. Thanks

Welcome Tammy @dinterman, I also have idiopathic small fiber peripheral neuropathy. I only have the numbness and was a little concerned with having my right knee replaced a few years ago but all went well and it didn't make my neuropathy worse. It's definitely a good question to ask your knee surgeon team prior to having the replacement. @artscaping and others with neuropathy have also had joint replacements and may have some experience to share with you.

When I had mine replaced, I was at a point where the pain from moving was pretty bad all day long and I was more concerned with my knee than my neuropathy. One thing I would concentrate on if you have a knee replacement, is to do the pre-surgery and post-surgery exercises so that your recovery goes smoothly. How bad is your knee pain now?

Hello, Tammy

I understand your trepidation. I have one knee replacement (my right knee), but it was done 10+ years before I received my idiopathic sensorimotor neuropathy dx.

I've recently been concerned because I've started to have bad days with my left knee. I've known for some time that it's chockful of arthritis. When I last saw my orthopedist, he assured me that my knee was not yet at the point where a replacement was my best option. I've received periodic gel injections ever since, which have made a big difference. I still wonder, though, what about when these injections no longer help? I had a good experience with my earlier knee replacement but didn't have balance issues due to neuropathy back then. So, like you, I wonder what a recovery would be like for someone for whom simple walking from here-to-there is already problematic.

I look forward to reading what others say in response to your post.

Cheers!
Ray