My doctor encouraged something called double voiding - going to the bathroom, then coming back in a few minutes to go again. It's frustrating sometimes not to be able to get it all done at once, but it helps.
Barbara H. Http:// barbarah.wordpress.com Sent from my iPhone On Sep 9, 2012, at 9:10 PM, "Janice Nichols" <jan...@centurytel.net> wrote: > I did self cathing for about 2 years. I no longer have to do it. I can > now clear my bladder on my own. > Keep us posted. > Janice > > > From: Ibridgets > Sent: Saturday, September 08, 2012 6:56 PM > To: jan...@centurytel.net > Cc: jcs...@yahoo.com ; xbeecla...@gmail.com ; j.d...@shaw.ca ; > tmic-list@eskimo.com > Subject: Re: [TMIC] Looking for input. > > I will be calling the TX urogynecology association on Monday to make an appt > and see how quickly I can get in. Apparently she has some type of therapy she > can do in her office and if that doesn't work it will be self cath. I will > let u all know how it works as soon as I have my first appt and will let u > know how this appt goes and I am praying ....for all of us. > > > Sent via the Samsung Galaxy S™ II Skyrocket™, an AT&T 4G LTE smartphone. > > > -------- Original message -------- > Subject: Re: [TMIC] Looking for input. > From: Janice Nichols <jan...@centurytel.net> > To: Bridget Skinner <ibridg...@gmail.com> > CC: john snodgrass <jcs...@yahoo.com>,Elizabeth Clark > <xbeecla...@gmail.com>,Janet Dunn <j.d...@shaw.ca>,tmic-list@eskimo.com > > > Well at least you have found some answers. That is always a plus. Let > me know how the bladder retention goes – I think most of us have a problem in > some way with our > bladders and it will be interesting to see what they find with you. Thank > you for sharing – we appreciate it. > Janice > > From: Bridget Skinner > Sent: Saturday, September 08, 2012 5:49 PM > To: Janice Nichols > Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com > Subject: Re: [TMIC] Looking for input. > > I wanted to let you know as promised that i FINALLY got insurance in place > and I saw my neurologist. I have something called myoclonus and am being > treated for the jerking. The twitching in my fingers is because of my brain > knowing how to type fast and my spine is keeping it to do so. I understand > what he told me but it is difficult to explain. But, the jerking and the > twitching are different. The inflammation from the TM did a number on my > spine but at least the jerking isn't as scary knowing it can, and is, being > treated. I feel relieved and hope the medication works. I have a referral to > see someone about my bladder retention issues also.Thank you for your > support. > > On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols <jan...@centurytel.net> wrote: > Bridget, > Are you sure you can’t get into the doc until August? Have you told them > your symptoms and they still refuse until August? How about seeing your > yearly doc you saw before TM? He/she > could probably get you in way before August. > I have taken both Neurontin and Lyrica. I am back on Neurontin after > trying Lyrica. Lyrica caused a lot of swelling in feet and ankles. Some > prefer it and have no problems. As far as the > urinating problem - I think most of us have that problem. The important > thing is that you are able to completely void your bladder. Do you have > problems wetting during the night or are > you able to feel enough to wake up to go to the bathroom? Again, the > important part is voiding the bladder. > > I think it is important to get into the doc soon. You can call his office, > ask to speak to his/her nurse and explain what is happening to you. Be > adamant that you need to be seen quickly > after having convulsions/seizures. I would think that would get their > attention, if not, find a doc who will see you. Your first neurologist will > send the info on you to the new one. > > Good luck and please keep in touch with us with your progress with these > issues. > Janice > > > From: Bridget Skinner > Sent: Monday, June 25, 2012 9:32 PM > To: john snodgrass > Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com > Subject: Re: [TMIC] Looking for input. > > Thank you so much for replying....it's so nice to hear other experiences. I > am so sorry what you are going through and I totally understand the million > other symtoms that come along as soon as you lose one. I too am on 80 mg of > baclofen (seems like the magic number) and have been for awhile. It is > possible, I guess, that after awhile your body starts to tolerate the meds. > They started me on baclofen when I was still in the hospital. I was just > starting to feel parts of my legs and it was excruciating pain. (at least I > could feel, I thought). and they gradually increased the baclofen to 80. like > i said I am so scared and can't get in until August 1st to see my > neurologist. I try to take as many precautions as possible not to hurt myself > but when I am "thrashing" or convulsing or whatever it is the left side of my > head, in the front, hurts so bad. > > On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass <jcs...@yahoo.com> wrote: > the baclofin took care of my thrashing around. my wife said i was terrible to > sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that > away.....then a host of other meds for a host of other symptoms,,,,uggg! > > From: Bridget Skinner <ibridg...@gmail.com> > To: Janice Nichols <jan...@centurytel.net> > Cc: Elizabeth Clark <xbeecla...@gmail.com>; Janet Dunn <j.d...@shaw.ca>; > tmic-list@eskimo.com > Sent: Monday, June 25, 2012 8:16 PM > > Subject: Re: [TMIC] Looking for input. > > A question is coming I promise: > > I can relate to all of these different sensations. I live in texas and am > terrified about the cold weather which won't be coming for quite sometime, > but it scares me. Maybe that's because it was so cold when in was diagnosed > and my hands would feel completely curled up in a ball and while I could pick > things up I was unable to set them down. > > I take Baclofen for the spastiscity and muscle spasms and I am so thankful > that it takes care of that type of pain. After being paralyzed and having to > learn to walk again the feeling that was coming back was pain I had never > felt before and was so hard to describe. > > As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and > Lyrica at different times and can try to give a description as to how one > works better than the other. > > My problem is that the Neurontin takes care of most of nerve pain but my > hands continue to twitch and when I wake up in the morning my feet and ankles > have such a horrible sensation that I feel like I need to go to the hospital > - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had > to after the time I spent there - a month was long enough for me) Has this > happened to anyone. > > Another question: Has anyone had any convulsions or seizures when they wake > up? Not sure what to call them but whenever I wake up, no matter what time, > My head thrashes forward than back a few times and it almost seems I have no > control over my body. I have to hold onto the ceramic part of the sink so I > won't hit it. I have already hit the bridge of my nose and chipped a tooth in > doing so. I don't know what to call this but I have made an appt with my > neurologist but can't get in until August 1 and am really scared. > > Also, I have a problem urinating. I have to push really hard no matter how > bad I have to go. > > In conclusion, I would really like to know what works best for nerve pain, > whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of > my legs. I should be grateful that it works that well, it is much better than > what I went through before the scripts were ordered. But am curious about > Lyrica. My neurologist mentioned it as an alternative but as I said the > neurontin was working so well(other than the lower half that I didn't want to > change anything.) > > Thank you for listening - I know we all have different experiences with our > own Transverse Myelitis and I appreciate your time. Wish I could find a > support group nearby. While I can't donate just yet I will be able to do so > in September and it will be very worth it. > > On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols <jan...@centurytel.net> wrote: > I would start with Baclofen first - I think it works great. You need to > take all through the day, morning, noon and night. It really does help a > lot. > Janice > > From: Elizabeth Clark > Sent: Monday, June 25, 2012 2:36 PM > To: 'Janet Dunn' ; tmic-list@eskimo.com > Subject: RE: [TMIC] Looking for input. > > Coincidentally, someone from a different TM support group recently expressed > similar difficulty and here’s a response that may be of help… > > > > > “Hi all, > > I am new to this group and was hoping you folks could give me some advice. > > I am recovering from transverse myelitis. I was unable to walk for six > > months and had complete paralysis from the waist down for three months. I > > am now able to walk again, but have severe hypersensitivity to hot and cold > > and get stabbing pain in my legs particularly at night. What do some of you > > do for the pain? I am looking to avoid narcotics and habit forming > > medications. Any advice you have would be greatly appreciated.” > ----------- > “My relief came from flexeral (sp) which helped the spasms and cymbalta, > which helped with the neuropathic pain. When I get localized brutal nerve > pain in my spine (rare), only tramadol helps.” > > > From: Janet Dunn > Sent: Monday, June 25, 2012 12:29 AM > To: tmic-list@eskimo.com > Subject: [TMIC] Looking for input. > > Hello Everyone - not sure who is on here anymore. > > I have written in before, several times in fact, bemoaning the issues that I > have with the cold cold winters that we get up here in northeastern BC. > > Now, it is the heat. My question is this: does excessive heat cause issues > like the cold does? I have never noticed it before, but this year I quit > taking Lyrica, and I cannot get the spasming in my leg to stop, no matter > what I try. I am wondering if stopping the lyrica has contributed to the > increase in pain, or if it is heat related? > > Thanks for your input. > > Janet > > > > >
