Symptom progression/regression
 

Like many others, I find myself reflecting on my symptom status. It occurred to me today that earlier in my neuropathy I had periods in which I felt my knees were weak and possibly giving way. I also recall that I would touch furniture when passing so as to insure my balance. This seemed to be an unconcious action. At sometime during this eight month span , this has fallen to the wayside and I had completely forgotten. I would be interested in hearing from other veterans concerning this ,and your own experiences of progress and postive signs. ( hopefully)--tom

HI
 

Hi, I did have an incident a few months ago where I got out of my vehicle and felt my left leg/knee buckle underneath me. I did catch myself, but it was the strangest feeling. I do have weak knees anyway. I think I have osteoarthritis in those as well as my whole spine. My left knee always hurts.

I am "kind of" undiagnosed at this point. I mean, I guess I do have some kind of neuropathy, but we don't know what kind, or what it's caused from. Otherwise, I can feel my feet and my legs, I do know however, I do have a lack of sensation from the knees down. My biggest complaint is the burning feet/ankles.

PN is insidious....it can progress very slowly and we adapt without realizing how much we are compensating. It is remarkable how much we can do by compensating! The human body is a magical thing.

I have found it doesn't pay to dwell on these things, but you make a mental note of it. I lived with this condition for 15 years without even a thought it could be neuropathy....I knew something was wrong, but never, ever thought some one capable of the kind of compensation I was, could have PN.

Know I remember comments people would make, 'You do that funny'. or PTs would comment, "Put your arm here, or there"...it was like I did not always know my body position.

Knees buckled, ankles turned, bones broke, fingers sprained, discs herniated, but I never but two and two together....because....MY feet didn't burn. I simply didn't realize, that I didn't feel much below the knee until my joint proprioception got so bad, it was evident.......and I also had episodes that mimicked TIAs. It was the TIA thing that got my whole medical process going. Forutnately, I got prompt care when I felt I was having a TIA...and it was NOT a TIA, but it was evident, that something was NOT RIGHT with me.

I still compensate, but now it is more conscious to me...and compensation if fine. Big thing is keeping the body aligned properly to minimize damage and injury. Keeping movement going is critical.

Hi
 

So many years of this did i put it together no,and yet my mom had pn.
But she walked with a duck like walk ,I did'nt..She fell down I crabbed chairs the wall burning,acking,tingling started in different places..There was 26
yrs. difference in age. She could sleep on any bed as long as her feet
were hanging out from undersheets aand blackets..I sleep in chair,
take Pills to sleep..When you touched her feet ice cold to everyone but
her..I feel my ice cold hands and feet others say they feel warm.
She could walk until her 80's and do well,also drive. At 61 with the atrophy
in wheelchair ,wouldn't think of driving. I don't know why until last few
yrs.,I didn't know or didn't want PN..IT goes on and on. :( Sue Today
I cry she never did,or I don't remember.oh sheets or anything on
my hand hurt,don't think she did.

Hi Tom, in my experience, small positives seem to happen very slowly, hardly noticeable at that time, but over a period all those little positives really do add up.
If you are looking back now thinking i couldn't do this a few months back without very noticeable weakness, but can do it now, then that does sound very promising to me.
Nerve healing is very slow, but not impossible, 3 years back i wouldn't have dreamed that i could be sitting at this computor without any very irritating burning in my feet and up my legs, but i fortunate enough to say i am.
good luck, i hope it is all positive signs for you.

Brian :)

I have to comment. I had an appointment yesterday with my neurologist. He has been pushing me to see an orthopedic doc for my neck and shoulders and also has written me a RX for PT on my neck and shoulders. I do have a herniated disc in my neck, yet at this time, I look at the cost of PT, against the pain for now and don't feel I can, nor want it yet, it's just an option still. He has me on Topamax and just increased it to 125 mg, which I do feel has helped with my headaches and the shoulder pain. He can feel the bunches in my shoulders.

I worry more about the small fiber neuropathy in my feet and legs and I guess he can't understand why. When I got to his office yesterday, my right foot started cramping, and cramping bad. While I was waiting for him, I couldn't take it anymore, I removed my shoe, the cramping was so bad, and it continued to cramp. As he is talking to me about my shoulders, and my foot had relaxed, it cramped again and I rubbed it. He says, "Well, you seem more worried about your foot!" Then I said, "Well Dr. Mehbratu, I take care of me and I have to worry about my feet, I have to work every day, I have to pay my bills, I have to work so I can come to you, I HAVE TO WORRY MORE ABOUT MY FEET THAN MY SHOULDERS, THEY ARE IMPORTANT, if I can't walk, my shoulders won't matter!" I was listening to him and rubbed my foot without thinking, he is suppose to be taking care of the whole person. I went to him specifically because of my feet and legs to begin with and he pretty muck ignores the small fiber neuropathy!

I have recently increased my B12 and the soles of my feet have started burning, I am hoping this is a sign of some small positives. The cramping, I think was because of the wrong shoes the day before!:eek: Also, I was glutened by a medicine for a UTI this week, so I could still be getting side effects from that too.

Thanks for listening to my rant. Tis over!!!!!

Darlindeb25 I am sorry. I have mixed feelings on pt. I have done it with a lot of issues but the one thing I do feel I lack is direction on what to do. I was told how important it is to stretch and do often feel kinked. So are there some things you can work on at home? Just be careful if some hoe you can get directed. I am not big on people touching me since I had a bad experience. Do you take epsom salt baths? I am not sure if that would be ok for you. As for stress and worry basicaly well worry is my middle name. I am going to work on quiet time for at least 30 minutes which will be my bath/soak time and try not to think. Yes easier said then done but may be something like that. I wish I had more help just I understand and hear you.

Thanks Daniella, my middle name is Worry too. I can't soak in a tub, my apartment only has a shower and I do miss having a tub. As for quiet time without thinking, I spend a lot of time not thinking, at least it seems that way sometimes:winky:!

Yeah, I worry about PT. My mom has had it over and over for years and I just don't see where it changed anything for her!

OK basics on progression/regression?
 

That is one of the unknowns and FEARS I believe most of us deal with here. I do know that my own driving force before diagnosis to get medical OPINIONS out the wazoo was to find out what the feakadelic scary thing was happening to me! My own instincts were literally yelling at me that SOMETHING IS WRONG..VERY WRONG.. From all I've learned here and from other sites...far, far more than is in any book in any library for sure..I felt I had to get it done and before I was a goner. Based on that instinct and the docs I was truly lucky to find, I am NOT a goner.
In all my readings, the thing I really find strange still...is that researchers seem to be more enchanted with the chemical and physical dynamics or the hundreds of neuro conditions's nerves deaths...very little about how they either SURVIVE or REGROW. Of course lots of this research is probably pure 'researchers' interest, of not application to US living in the real world. The rest is motivated by the drug companies to ultimately and ostensibly 'alleviate' our pains....A teeny bit is involved in the processes of 'getting better'.
That All said, What I've gleaned so far is that the processes of nerves regrowing is very similar but not so 'pattern oriented' as that of nerve death or damage. Soo that means that the pains you feel now may be re-growth, I've found my own to be intermittent and sporadic...I try to keep moving...so once those nerves 'connect' somewhere, they can be given 'clues' from somewhere unknown to 'get connected' in the right ways...
That said, the whole thing of getting docs to LOOK at you ...the DUH? patient as a whole really requires a lion tamer at times?
Getting good PT and all is a hard, very hard thing to do..Here it mite pay off, IF you can, to go to available PT sites and see, what and how they do it.. Some patients are sheep and just do...to do, because it's supposed to be good. Most patients don't know about the probelms we face in the Doing/Trying Harder in some circumstances...Interview a PT before you sink your money and the INs Co's $ into any place...IF you are in a situation to be picky? It can really pay off..
I have been getting a possible improvement ...I will let you know more after I see the neuro..which will be soon.
Yes, pain -nerve pain does occur with nerves healing as well as them dying.. Keep thinking the good parts and it might just be so! - j

Good or bad, it's all totally scary...no way about that!

J
 

I agree finding good PT is not always easy. I perfer in to out. But these 60 bed things they have,well there good just not large enough,this is first
time I have waited so long to get in. Why people riding mortorcycles
to save money on gas. This is a college town,so the amount of hitting
street signs ect fills them up,or this is what I've been told wouldn't
doubt it...But would ratter wait then go where they have no idea what they
are doing. I feel like there has been some inprovement,over the years.
Dar that cramping in the foot really hurts and so does my neck,Welll
good luck all..Oh D did go to one of the best places,but had a hard
time there,yea just never know...Hugs to all Sue

I never thought about interviewing a PT'er before going, that's not a bad idea. I'm telling ya, my neuro certainly doesn't have a soft touch. He was asking me about my neck and shoulders and, of course, had to feel of them both. He pressed his fingers so hard into my shoulders that I had a fire all day yesterday, in both of them, that hasn't happened in months. I'm pretty sure he could never do PT!:eek:

This is very true and it seems I have had to be the lion tamer with this doc more than once! First, he refused to believe I have celiac disease, which I finally cleared the air with him by saying, "It doesn't matter if I am or not, I am gluten free and will be for the rest of my life, lets move on!" Then, after all the testing he did, he actually had a difficult time admitting I do have small fiber neuropathy--I'm not sure if it was because my PCP had already diagnosed it, or what his problem was! I already mentioned taming the lion this time. I actually like this doc too! Amazing huh?

Hi the doc I saw said if I didn't want to take bath for the lower half fill a garbage can up with epsom salt water and soak that may help you. Also as for pt I know the pt is suppose to touch and stretch you but for me that was not ok cause I also have something similar to rsd and that is not to stretch by someone. So if I did pt again it would be more of a direction thing like at cleveland. I will say I feel pressure to finish even if not able and even at cc they said I pushed too much but I was told to when I wanted to get out of the pool they said stay so I don't know.Good luck.