Connect
← Return to Living with Neuropathy - Welcome to the group
Discussion
Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
I was referred to a neurologist after suspected nerve damage resulting from a nerve block that was administered behind my left knee for a foot surgery. The neurologist completed an EMG and NCS. EMG was normal but NCS noted sensory damage, which I expected. The problem is that I tried to explain that I’m also experiencing muscle twitching throughout my body, mostly both legs, and a strange water drop sensation on my legs. When I explained this to the neurologist, he said, “That shouldn’t be from the nerve block.” So I asked him to perform more tests. He simply gave me a followup appointment for January! I’ve never felt so dismissed and disregarded in my life. This is my HEALTH! I tried calling several other neurologists in my community but they all say I need a referral from my PCP or the other neurologist. I am hurt and afraid. And EXTREMELY anxious. Actually, I think I’m crossing over to the depression realm. I’ve had thoughts to end my life just so that I won’t have to suffer! I am normally super positive and solution focused. But right now I feel like a coward. And I’m only 36 years old. My husband is being extremely supportive but he doesn’t quite get it. And I haven’t told anyone else in my life because I don’t want to alarm them until I know for certain that there is cause for alarm. I guess I’m seeking advice and prayers. Thanks so much for reading this post.
Replies to "I was referred to a neurologist after suspected nerve damage resulting from a nerve block that..."
@kiro0001 It sound like you're dealing with small fiber neuropathy (SFN), and neurologists are as much in the dark as we are when it comes to treating SFN. Keep in touch with this group, educate yourself, and try for yourself options that have worked for others to relieve the pain.
@klro0001
Hi,
My Neuropathy started in my early thirties. I also had the water sensations. The pain, burning, stinging numbness, pins & needles were awful. I couldn't walk very far. I am one of the lucky ones. Mine got better many years later. The burning now is so mild it's virtually gone. All my other symptoms are better too except the numbness which is worse. When I was having other pain problems my doctor prescribed Fentanyl, and it did help my Neuropathy as well.
You talked about Anxiety, depression suicide, and being ”Super positive.” I'm not trying to diminish the seriousness of what you're going through but you can’t allow yourself to change your positive attitude to negative, it will only cause additional problems and you have enough to deal with. Just take one day at a time and never give up. You’ll get through this just like the rest of us have.
Jake
Connect
I have small fiber peripheral neuropathy, and I experience symptoms exactly like yours: muscle twitching and a strange feeling of water running down my leg. You aren't crazy, it is a manifestation of the disease.
Your neurologist is probably right. PN is a strange disease with multiple manifestations.
Having to wait for an appointment for a few months is quite usual, as neurologists are in short supply these days. My advice is to stick with the one you have, if you otherwise like him/her. Nothing bad is going to happen to you in a few months of waiting, other than the anxiety/depression you mentioned. If you haven't already done so, you should get an appointment with your PCP asap to discuss these problems and what to do about them. Don't be bashful about reporting all your psychological symptoms.
As for your husband, he sounds like a good guy. Try to remember that he is also suffering from your PN, and that he will never "get it" completely, because he doesn't have it.
Try to get to the place where you accept the disease, then go from there. It's a hard thing to do in the beginning, because it threatens your self image. Nevertheless, fear, denial and anxiety will always make things worse.