ATTN; Nurses, Medical Ppl, re: my neurologist's records.

[eyeamdry]

Hi all-
I have been seeing specialists in addition to my rheumy which are a pulmonologist and a neurologist. I am having trouble breathing and get short of breath with little effort.  I am also having trouble walking.  This isn't a sudden onset, at least for the walking.  I have two knee replacements, one ten years old and one is one year old. My knees have been numb in that area even before the last surgery. Not sure of the first. 

I am going to see my rheumy in a city an hour and half away on Monday and I wanted her to have my neurologist's records as I had EMG's done and another very painful needle test on my legs. I don't have an appt with the neuro for another couple of weeks.  I have the records and they say a lot of repeat stuff, for several visits. I am going to put down a couple of things than I do not know what they stand for.  I am not afraid of any diagnosis.  I can't walk for more than a few yards sometimes for heaven sakes and I want to know what to do about it, if anything.  The pulmon dr thinks breathing is caused by smoking many years ago, radiation to my left chest for b. cancer, and having a "stiff diaphragm" from Sjogrens. 

EMG report:
1. significant decreased compound muscle action potential of left peroneal and mild decrease of the r. peroneal nerves.
2. somewhat prolonged distal motor latencies of the l. peroneal and tibial nerves.
3.decreased sensory nerve action potentials of left sural nerves.  Normal latencies of bilateral sural nerves.
4. Normal needle EMG test in muscles tested of bilateral lower extremities.

Impression.
1. Remarkable EMG for distal sensorimotor (demyelinating and axonal) polyneuropathy of bilateral lower extremities.
2. No evidence of lumbosacral radiculopathy in the muscles tested.
3. No electrophysiologic evidence of myopathy of bilater lower extremities.

[Styx]

Hi eyeamdry, impression #1 sums it up re: your difficulty walking, though it may or may not be related to your SOB.

I'm not well-read on treatment for Sjogren's neuropathy, but I think a course of IVIG would be appropriate for starters (or perennially).

Have they performed a high-resolution CT on your lungs? And what about lung function tests?

Good luck! I hope everything goes well.

Styx

[eyeamdry]

Styx, yes I have had breathing tests and all "the stuff related."  I have COPD with history of smoking, but quit in 89.  I am anxious to have my rheumy read my reports from my neuro.  There is a bunch more stuff, but most of it reads "normal" to me.  There has to be a reason I cannot walk more than a few yards.  Lucy

[Styx]

Are you not able to walk a few yards because you are out of breath, leg weakness, or something else?

[irish]

Lucy, I don't know the whole history of your illness, but I am glad that you are seeing a neurologist as it looks like there are significant issues that need to be further explored with the walking. I would guess that neuropathy of some ? origin is involved.

It would be wise to see pulmonary after your neurologist visit and get a good workup again. It might be that the lung issues are related to the legs, but further testing would be needed to pin things down. Also, anytime a person smokes ( and even if they quit) there can come a time as we age (sorry about that !!!) that our lungs can suddenly develop issues.

I would guess that those of us who smoked and quit have weakened out lungs enough that as we get older the old COPD creeps in---darn it anyway. Also, there is always the sjogrens effect on the lungs. I am sure that I said a lot without saying anything of significance. Hang in there girl cause hopefully this will soon be resolved. I would keep the IVIG on the back burner just in case. Ask your neurologist about this cause there are some issues that are automatically covered by medicare that involve neuropathy. Good luck. IRish

[eyeamdry]

@Irish + Styx,

I can say for sure...........I am having trouble walking (as in being too tired to continue) after a few yards in most cases.  If I rest, I can probably walk a few more yards.  Yes, I am having trouble breathing while this is happening.  I cannot get enough air and am breathing hard.  It's a feeling of getting my breath and my legs to "catch up" so I can continue.

I know smoking cigs can cause problems years later, Irish, and I am in this category, but the dr doesn't think bad enough to cause this distress.  On breathing tests, I come out pretty well, better than some normal ppl, and worse in some cases.  I do have emphysema, but they don't think bad enough to be causing all this.  I have heard this from  2 or 3 of my docs now.  BUT WHAT THEN? 

I am overweight, but nothing to the tune that should be causing me to not be able to walk.  I have some follow up dr appts soon and will try and tie this together.  I'm waiting for them to say "it's nerves, or all in my mind."  I do believe the docs do not think this.  But, here I am with all kinds of problems and nothing shows on tests.  Humbug.

[Styx]

Agreed with Irish, and that sounds more like pulmonary/cardiac than neuropathy.

It's hard to pin down the cause with Sjogren's and the COPD, but maybe they will have you do another round of lung function tests.

If those are normal or "not bad enough", they will probably tell you it's in your head, even though it clearly isn't.

Do you use an inhaler?

[lighthouse33]

Lucy,

There is a great COPD Support Forum at the link below:

http://copdforum.portalone.us/default.asp?CAT_ID=2

I have been lurking there I would say for over a year reading all the threads.  They seem to have knowledgeable people there and they are very nice.  Maybe they could explain why you are having difficulty walking.

My mother has COPD / emphysema.  Well, that is what the hospital says, she refused to see the pulmonologist when he came into her room.  We have finally convinced her to see one later this month.  She smoked from her teenage years until she was 72.  She is on 4 liters of oxygen.

Mom is now confined to basically two rooms in the house.  The family room where she sleeps, the kitchen and the kitchen bathroom.  She can only walk so far without getting out of breath.  The home health nurses awhile back suggested pulmonary rehab which she refused and recently they have tried to talk to her about managing her COPD which she refused also.  Won't exercise either.

From what I understand from the website, the less you move, the more your muscles will atrophy.  You need to have strong muscles to help your damaged lungs to breathe better. 

Anyway, I hope you get some answers soon, so that you can get some relief.  I have the polyneuropathy so I know how hard that can be.  Have never smoked though.

[eyeamdry]

Thanks everyone for the kind words of wisdom.  One thing I'd like to note is that my leg muscles are STRONG.  I always give heavy resistance to the dr when he says "push."  My legs and particularly my mid-leg (knee area) are numb.  I have had two knee replacements and the numbness was in place well before my last knee replacement a year ago. 

One of the things that made me realize I had Sjogrens was the adding up of my symptoms.  Two of them were numbness in my face (lips in particular) and my knees.  I don'[t think this is simply one or the other type of thing.  I have been exercising on a glider, which uses the leg muscles but does not put extra weight on the knees.  I have this in my living room. When I see my docs in the next two weeks, maybe I'll know more.  I see my rheumy on Monday and have the neuros tests to take for her to see.
I'm going to get ready now, we're going to see a movie......"Flight."   Hope it's good.

Lucy

[irish]

Lucy, One little simple thing you can do when you are walking and breathing hard is to breathe out slowly, with pursed lips, and breathe out a longer period of time than when you inhale.

This sounds kind of crazy, but this helps to blow off some of the carbon dioxide that can build up when we are suffering from "air hunger". This is the trick that is taught to people with COPD and it works well for the rest of us who struggle with shortness of breath.

I have times when I get bronchial spasms or my myasthenia affects my breathing and I will just breath so hard and can't get a deep enough breath. If you blow out slowly your body will not feel as short of oxygen. It does help some. Good luck. Irish

[olmphoto2]

Good suggestion Irish!  Lucy, there are good sources to be found on this (probably google "pursed lip breathing" to find them).  It's done by blowing out very gently, as if you where cooling a spoon filled with hot soup.