While this may be frustrating and sound scary, it’s also a good sign that your doctor is invested in getting you some results.
Good luck.
From a practical POV an exact diagnosis may not really be all that important. If your nerve conduction velocity tests are abnormal and your mother also has a neuropathy then it is pretty fair to clinically label you as a hereditary neuropathy. Charcot Marie Tooth is the most common one albeit it usually manifests more with weakness and “clumsiness” than sensory symptoms (things like high arches, hammer toes, and foot drop being classic). The hereditary sensory neuropathies are less common and more often I believe manifest with lack of sensation than with pain. (Again, not my area of expertise.) So the doc might be perseverating over what exact name to give it since it does not clearly fit into any of the patterns exactly. Genetic tests might or might not be definitive. But again, if a hereditary neuropathy is diagnosed, the exact label matters less than working towards the best pain and function management possible, which means likely doing as your mother has done, trying various meds and combinations of them and probably some PT and/or OT along the way.
No question about this much - it is a frustrating process. Hang in there.
Do you take Lipitor by any chance? Surprisingly this cholesterol, drug can cause foot pain. Not something you would connect.
Good luck today.
Any answers?
I’m sorry to be late with my updates. I sort of found and got addicted to Reddit. No, I don’t take Lipitor. And if it is hereditary, it certainly involves pain in this case; I’ve seen my mother trying to deal with it - propping her feet up but hanging off the edge of the footstool so the soles of her feet aren’t touching anything. I wish I had one now too. I do feel clumsy these days but I thought it was the drugs. And my mother has high arches but I don’t.
I saw a commercial for Lyrica last night which described my symptoms almost exactly (numb feeling, yet painful tingling). Unfortunately it was a diabetes commercial which didn’t make me feel better. Apparently it’s like the Gabapentin I’m taking 900 mg of each day (which means 9 pills) and which doesn’t actually do much good. My lips and tongue feel better, or else I’ve just gotten used to it. The pain is tolerable in my feet and hands at this moment but yesterday it was terrible and I took some tramadol on top of the gabapentin and even that didn’t work.
Doctor-wise: Now I have to go to a hematologist/oncologist and am waiting for a call-back for the appointment. Then in September I go back to the neurologist when the results from the oncologist are in. I don’t know why they scheduled it so far in advance but I wasn’t really given a choice. I guess they want to make sure they have the oncologist results in hand when they see me. But that’s a long time to wait when you’re in pain and the pills barely work.
P.S. Thanks, DSeid, for checking up on me. After I posted that last post, the pain became almost unbearable. I can see why keeping the legs horizontal helps. Gravity made it so much worse and also made my ankles and feet swell tremendously. Tramadol took the edge off the pain but only when I’m sitting still. Nothing gets rid of it completely (like when walking - I literally have to limp on both feet) and I was nearly in tears at work before it kicked in.
I think I’ll call and see if they have anything stronger. Waiting until September is going to kill me.
Thanks for the update and I am glad my worries with you dropping off the board so suddenly were just me being a worrier.
I wonder what they are thinking about with the Heme-Onc bit, multiple myeloma? Seems a stretch.
Toes-busters?
Edit: Soles-busters?
get a flat foot to provide protection.
Except when it is.
Thank you so much. You have no idea how great that made me feel. It brought tears to my eyes and it does again typing this response.
I don’t know. I don’t even know what the Dr. is going to do. I assumed taking more blood and that was it. I finally got an appointment, July 15 so we’ll see.
I have good days and bad days. Sometimes my feet are just numb, sometimes everything hurts. I’m taking the same drugs every day. Gabapentin is what they prescribed for pain but my mother tells me it’s not a painkiller.
I’m almost used to it by now. But that’s being a martyr. My mother suffers from this every day and chooses to be a martyr. Either that, or all the pills they gave her (and she’s given me a lot) never worked. I have small baggies in my purse that would probably get me arrested (hydrocodone, which I don’t take because it makes me itch, and tramadol, which also doesn’t help) if it was found. Now I have some other drug she mailed to me (Celexa) but I think it’s an antidepressant and those never work for me so I’m not trying it.
So, that’s my update.
That’s not the only reason you shouldn’t try it: there are those rules about not sharing prescriptions, plus it might not be safe for you.
Gabapentin is used to treat nerve-based pain (i.e. pain that is just generated from the nerves). It’s useful in some neuropathies. No, it’s not a painkiller the way Advil or morphine are, it works completely different. I expect it wouldn’t do anything if you had a broken leg, but for your situation it might be appropriate. I’d bet similar logic is at play for the Celexa.
Celexa is a very mild drug, but dosage has to be carefully monitored. If you want to try it, get it through your doctor, not your mother.
If you say SSRIs haven’t worked before for this kind of pain, there’s probably no use.
But keep trying. I’ve been on different drug combinations for over a year, and I just started a new one, and it’s been a life changer. As you mentioned, don’t settle. Especially not for pain.
Another voice advising strongly to not self-medicate with another’s prescription meds.
I would however not be shy about leaving a phone message (or if available in that doctor’s office, an electronic record message) for the neurologist about the status of your pain control and asking if anything else can be tried treatment-wise between now and the the appointment. You can even mention that your mother has unused Celexa and ask if adding that would be reasonable to try, on his/her guidance, now, in order to be able to report back how well it does or does not work by appointment time. Or something else. Or if PT/OT makes sense while this diagnostic phase is in progress.
? They do make 300 mg caps, for 3 per day [my dose] You better check with the pharmacy!
[Hell, I got told by CVS that they no longer made one med I take occasionally and they still do, the manufacturer and Rite Aid confirmed they still do. :rolleyes:]
Okay first the update. I saw the oncologist today and she was mostly curious about the swelling in my ankles and feet, since it doesn’t seem to fit her idea of what could be wrong. All the other strength tests she did were good but my reflexes don’t seem well.
I trust my mother more than God. She knows her stuff and missed her calling. Also, I’m not being stupid. She has neuropathy too, in her feet, and she’s tried everything. She gave me Hydrocodone and it just makes me itch so I stopped. Trazodone - hallucinations, so I stopped. Tramadol, takes a tiny edge off the pain, so I do take it when I’m desperate. Amitriptyline: does nothing. Neurontin: does nothing. Celexa: also from Mom and haven’t tried it yet.
I am supposed to take all the pills they gave me of the neurontin (gabapentin) and then they’ll re-prescribe it at the higher dose. But I already have an appointment to see what else they might have in mind, since this dose doesn’t work either.
So now they’re going to look at my bloodwork (they took 7 vials) and see if it’s just a B-12 deficiency or something else. If not, they’re going to take a marrow sample. Not encouraging.
Update: the Gabapentin (Neurontin) seems to work for the most part now (I guess I needed it to finally kick in) and I take the Tramadol when it isn’t enough. I have an appointment July 31 at which time the neurologist is supposed to look at the hemotologist/oncologist’s findings.
An interesting thing I found out at my hemo/onco’s appointment is that she asked if I feel full after not eating very much and my jaw dropped. I am full before even finishing half a plate, unless I haven’t eaten in two or three days (which has become the norm for me). I ate well yesterday, and ate a bowl of mac ‘n’ cheese Saturday, and nothing Friday.
So that’s it for now. Thanks (esp. to DSeid) for listening.
It’s not a tumor!
That’s not really the norm for anyone. Is your primary care doc aware of your not having an appetite? Whatever the cause of that, it stands a good chance of causing nutritional deficiencies.
I’m glad the Neurontin is finally helping!