Polyneuropathy?

[Kathi49]

I mentioned in another post the other day that my Neurologist has written a script for aqua therapy. It is kind of a long story but I believe it might be helpful.

The thing that shocked me was the diagnosis on the script. She had written Chronic Pain, OA and Polyneuropathy. It is the latter that threw me for a loop. I KNOW what Polyneuropathy is...just hoping she is referring to the sensory kind and maybe wrote it as something of a "catch all" term. But I felt like calling her so badly and asking...is it polyneuropathy, central sensitization or central pain? Geez, anymore...which is it???!! Or maybe there is really no definitive answer as every test I have ever had comes back negative. Oh, except the QSART...it just showed supposedly minute small fiber PN.

So, any thoughts? Seriously, and although she is a good neurologist, I am almost tempted to go to the one and only one in Indy that specializes in it. But at the same time I feel like he will run the same tests she did and it MIGHT be a waste of time. Ugh, just confused.

[Cervie Barb]

Well, I was going to say that she was using the term to describe your symptoms more fully, but actually neuropathy is suppose to be tangible, measurable nerve damage where radiculopathy should be used to describe subjective symptoms. At least I think that's right! Some people use those terms interchangably. Tomatos/tomaatos, I guess. lol.

Maybe because you did show some small fiber PN that does put you in the neuropathy column.

[Kathi49]

Thanks Cervie,

I think you are right...I really think she was just using a broader term. I guess to cover all that ails me LOL!

And as of today, and after my appointment with my urogyn, I have "Levator Myalgia". Actually, I didn't see him but rather a different doctor. She asked if I wanted to be part of this study for nerve damage and the Levator muscles. But, and I don't really get it, I am not a candidate (as she said later) because my ovaries are gone and have been gone for some time.

Anyway, pelvic floor PT it is again which is why I had the follow up to begin with. Sooo...the place where I am to go for rehab or rather aqua therapy also has pelvic floor therapists. So, it might just be my one stop shopping place. :) I am going to call their tomorrow and ask them more about it. If I have to do PT (swimming and this other), I might as well do it all in one place. But I want to find out first...more info.

Ooops, and she did say that this will probably be chronic and they could either do injections, no not steroids, and/or I could just go into PT on an as needed basis. Other than that it is meds such as Neurontin, Elavil, etc. So, I think for now I will go with PT since it helped so much this past summer.

[Mark N]

Kathi, I just wanted to say "I hope you enjoy your one stop shopping":D I hope the PT place is able to handle all your needs.

[Kira]

Polyneuropathy just means that more than one nerve is affected.

From your posts, I know that you've been diagnosed with peripheral neuropathy/ small fiber neurropathy for a while, right? And, my guess is that your neuropathy issues aren't limited to a single nerve (like your ulnar nerve or your sciatic nerve or your median nerve, etc). It is a mononeuropathy if one nerve is affected (like carpal tunnel affecting the median nerve on one hand), and it is a polyneuropathy if a bunch of nerves are affected.

So... polyneuropathy is just another way of describing what you already knew.

Good luck with the pool therapy.

[Kathi49]

Mark,

LOL! I know...I termed it my one stop shopping place because I really do NOT want to go to two different places. When I called the Rehab place originally, I mentioned that I had an upcoming Urogyn appointment and the reasons why. The gal at the Rehab place said, "Oh, we have physical therapists for that too." I didn't go into great detail I just went ahead and scheduled the first appointment with them for this coming Monday...for the aqua therapy that is. On the way home yesterday I recalled what they had said and thought MAYBE I can do BOTH at the same place. BUT, I want to find out the PT's (pelvic floor) gal's credentials too. Not to be mean or anything but the gal I had before really knew what she was talking about and helped me considerably. Anyway, I just want to try and make sure I get one as good as this last one was.

Anyway, when I went yesterday, I was just a tad miffed because I really wanted to talk to the Urogyn doc myself. He is actually the Director. But this other doc is a full fledged Urogyn too so I dealt with it. YOU know how that goes LOL! I know you ran into the same thing not too long ago. But she was actually pretty good and I got past my "tude" LOL! Maybe I was just tired...that drive is a long one and I was hurting. But she rreally answered all of my questions very well. I also talked to her about Premarin cream since I had a lot of questions about that. So, I learned a bit more about that too...especially the systemic questions I had. But I won't go there LOL! Evidently, that stuff is working very well LOL! :) When she was done talking about that, I had a better understanding of WHY I had such a "hit" with it originally. Long story, but what she told me pretty much goes hand in hand with what my ob/gyn had said.

Kira,

Thank you. I can always depend on you. :) Yes, I realize poly means more than one. But what flashed through my mind right away was...AUTONOMIC or MOTOR. And that's a scary thought. I know there are different types she has just never said Polyneuropathy before. So, yes, I was hoping she just meant "overall". She has done some very thorough workups using Athena Diagnostics as well...and twice. And all those mile long tests came back negative...same thing with Rheumatologic tests too. The only tests that came back showing SOMETHING was a slightly elevated ANA which the Rheumy said is really no biggie; meaning some people can have it slightly elevated and it is normal for them. And then his tests showed no evidence of any connective tissue disease. Anyway, all these bloodwork tests even the B12 and heavy metal toxins came back negative. It was the ANA and the QSART that showed minute small fiber PN. And I am thinking the ANA was slightly elevated because that test was done shortly after my second fusion.

And I guess it all comes down to managing it. Oh, and the gal yesterday mentioned Neurontin or Elavil something similar AGAIN. Geez, I am telling you if I start Neurontin again I will be a basket case. And that's where the problem comes in. I can't drive on stuff like that or even the AD's...it is like I am in a total brain fog and CANNOT think to save my life. My husband was telling me last night to just go back on these types. But I told him, if I do, I will be a mess. And I asked him to recall what it was like when he had to drive me to work. And his words were, "Oh sh@@!" So, you see what I mean. :eek: I just couldn't go to PT on my own...I would have to have someone drive me. So, for now, I will try this...and it is supposed to be twice a week for 6 months. And since ALL the docs are pro swimming...I will try this first. :) And I should add that I have a friend that is going to the same rehab place. She is like me though...one or more docs are telling her she has RSD in her arm and others are saying she doesn't. We are both frustrated. But she DID say that the pool (very warm by the way) is helping her arm a great deal. So, I will try this and see how it all goes. :)

[houghchrst]

Aqua therapy sounds wonderful Kathi, I hope it works out well for you.

[Kathi49]

Thanks Christina,

But I have already informed my Neurologist I will NOT drive over there when it is icy or snowy. Thank goodness she agreed with me. :) I just can't afford a slide off or have someone slide into me. Sooo...on those days...forget it LOL!

[slipnslide]

Kathi,

I'm thinking it was used as a catch-all term too.:rolleyes: I had Neuro diagnose me with C5/6 radiculopathy after my ACDF surgery. He based it on a very short office visit of me explaining what pains I was having and an exam of my reflexes, where he diagnosed me with reduced C5/6 reflexes. Nobody else I have seen has diagnosed me with radiculopathy post surgery, but then again, he's the only one who has checked my reflexes.:rolleyes: I guess what I am saying is that they look at the symptoms and use a catch-all term as a diagnosis when they really don't know for sure. The "poly" term goes right along with the same line of thinking.;)

ANyhow, it's just a thought....lol....Did you get a chance to ask the doc yet?

Kim

[Kathi49]

Kim,

No, I haven't called her. And I don't think I will. We have talked about this sooooo much and in depth that the bottom line is either trying various meds, exercise or both. So, I am opting for the aqua therapy and as of yesterday, more pelvic floor therapy.

Oh, and the Rehab place for the swimming will NOT be my one stop shopping place darn it!!! They DO have pelvic floor PT's but they are at another hospital even further away than this place. So, I will go back to the gal that did all of this before...at least she is much, much closer to where I live. The thing is...I will probably be in PT 4 days a week! :eek: :)

The good news is the lumbar facet injections have helped...at least so far. :)

[Lil E]

Aquatherapy is real good. Thats what I do when I can move! I also take 25mg of Lyrica without the s/e's of Nuerontin. My nerve pain is over 50% better. Hope you get better, Kathi.

[Kathi49]

Thanks Lil E!

I had my first appointment with the, what they call, the "on land" PT yesterday. She was great; took all kinds of measurements, ROM, strength, etc. And gave me a LOT of handouts...3 different ones for some minor exercises. But a lot more on body mechanics which was great! NO ONE has ever given me as much info. as she did. And I mean each page had to do with everything you could thing of doing in a given day. So, I was reading over them last night.

Then she took me on a short tour of the facility and I am very impressed! It is sooo clean and neat. And what I was thrilled about, silly but true, is that the locker rooms are toasty warm. :D I have always hated to swim and then go into a freezing cold room to change. :eek: And the pool she said is normally around 90+ degrees or so...and that will be nice.

So, the plan is...

I will be with a PT (who I have heard is great) and have one on one two times a week for 6 weeks. At the 4 week mark they do another evaluation on land. And that is something I have never had before either...the one on one.

Anyway, when done with all that; then I can just pay $30 a month for unlimited access. And I don't think that is bad at all.

And there is a class called "Adult Adaptive Aquatics". The NEAT thing about this is what it says in the brochure. "This pool class is designed specifically for individuals who are recovering from neurological conditions". There is more info...I just put the short blurb here. But she explained to me that it is normally for patients and their caregivers. So, not sure if I could go into that or not. She is going to check and see if I can later on.

So, that it is it for now...I start next Monday. Oh, and I did find a short cut since the facility is pretty far away from my home. I decided to take a different route just to see if it would be shorter. And, OMG, it took 30 minutes off my usual time. My sister lives right near there so I KNOW how long it usually takes and almost an hour. I am just saying by going this different route I avoid a LOT of traffic! It was pretty much a straight shot so I was happy about that!