all the news that's fit to print
 

So the combo of 2 levels of morphine plus a lido drip seems to be making a small dent in the ON pain.

THe new developement is that I have no feeling in my scalp. WHen I looked this up, it seems like a C1 lesion could be the cause. If that's so, that's a new lesion because mu highest ones are c2-6. Off to see my MS specliast on Wednesday at one hospital and then to see my pain sepcialist at another on Thursday.

I will have some questions. I want to know how long you can take this kind of morphine before it starts causing problems. And I am having wicked insomnia, despite the sleeping pills. I am a zombie this last week. I could not wake up enough to drive my son to school for his exam. I picked him up before lunch and then went right back to bed. I am having a useless day today. *sigh*

I feel fat and ugly this week. I'm doing WW, still, but it's slow going with illness and I need my hair cut and coloured but can't get that done for two weeks. It's hard getting into my hairdresser and I had to squeeze it in when I think my head shouldn't be killing me and definately before they do more surgery on me. My skin is a mess right now from the allergic reaction to the fentanyl. I am hiding the post-hive ugliness of my arms in long sleeves. I probably need to make an appointment to see my dermatologist.

SO that's what new in the state of me.

PG, you've got a lot on your plate right now. Hang in there with WW and keep the end in sight. Trying to stay postive when you're dealing with so much pain is tough, I know, but everything helps. :hug:

Thanks EE. I called the dermo to make an appointment, but it's been more than 6 months, so I will have to ask the MS specialist to refer me again. Such a stupid system. If you've seen one, you should be able to just keep making appointments and not have to ask someone else to do it for you. Such a waste of time.

Anyway, I've been plugging away on WW for 3 years as of the middle of next month. I had just hoped to be at goal weight long ago, but first the MS diagnosis and then the ON and well...I could only deal with so much. I've been down the last couple of weeks, so I suppose I am managing. THe Morphine makes me not hungry, but then that throws my body into starvation mode. I just can't win!

Hope all is reasonably well with you.

I had both an MS specialist appointment and a pain specialist appointment last week. Two weeks ago, I lost all the feeling in my scalp. My MS specialist says that this is really not good because I am taking a disease modifying drug and clearly my body is not responding like they had hoped. She said the ON comes from the MS, which is interesting because the pain doc insisted it was it's own issue and not connected. MS doc says pain doc is coming at it from a different persepctive so that's why she's saying that. *confused*

MS doc dropped a bomb in my lap by saying she is trying to hold off on chemo as long as she can for me. CHEMO!?!?! This is the first I've heard of my MS being that bad and it has me reeling. I don't know if I was just not paying attention or if someone forgot to tell me (talk about breaking it to me gently!) but I had no idea this was even under consideration. It's been devistating.

THe pain doc was flip flopping about doing the surgery at the end of the month (Cervical branch block) but in the end decided to keep me on her schedule. No lido block last week-for some reason she didn't remember that was what we were going to do so she wasn't prepared. THis week so far, I've woken up with a raging headache three days in a row. THe ON headache combined with a tension headache. I am also having wicked insomnia from the morphine. I am on a new sleeping pill, but so far am unimpressed.

No word on how or if the latest MS symptom will be treated. It's frustrating to think of all the questions you want to ask AFTER you've seen the doc. It's not things I can think of in advance because the questions always pertain to whatever was discussed during the appointment. I also think my brain is a bit muddied by the meds and so it takes awhile to absorbe whatever I have been told.

Anyhoo, that's the lastest. Certainly not happy making news. Right now my head is killing me and I have three classes I am teaching in the next 2 weeks before I hang up my teaching hat for good, because of my health. I cannot wait to be finished at this point. It's all too stressful and trying to prepare when your memory is not working at 100% is difficult. I will be heaving a BIG sigh of relief a week from Friday when it's all over.

PG, in light of the bomb they dropped on you, I think I'd call and request the doctor call back and explain. They know that your mind is muddled from the meds and that really deserves some attention and an explanation so you don't have to sit and wonder. You've got enough stress without having to deal with that as well. These doctors really kill me at times and I don't mean that in a good way. I really hope you've already called. Take care :hug:

I had a brief talk with the MS nurse and found out the Big dose of vitamin D is for inflammation. I have an appointment with the MS specialist in 2 weeks. I got in quick to have the carpel tunnel test-they called me Thursday asking if I could come the next day early in the morning and I said I could, so that's taken care of. It hurt because my hands are so sensitive to pain.

I had my hair cut today. Boy, I am paying for it. It ramped the headache up. I can't remember if I said, but I ended up in the ER on Monday (last week) til the wee hours of the morning. It took forever to see a doc and then only because after 4 hours of waiting, I went to the desk and told them I was going home. I was in too much pain to stay. THat made them hurry and he came in 10 minutes. THey gave me and IV of torridol and an anti nauseant (not gravol) and then some steroid as well. It beat back the headache I was having at the front of my head, which was what was wrong. THey were freaking out because my BP was 170/97. HELLO?!? I HAVE A HEADACHE!! Geez!

Anyway, I see my pain doc on Thursday this week and I think get lido. I will be talking to her about the ER visit. It's SO useless going there and it was a desperation move-I had taken all the morphine I could take and it wasn't helping.

God I hate this.

Oh and my hairdresser took one look at me and asked if I had been losing hair. I have always had very thick hair. I was surprised she noticed. WHether from stress or medication or both, I have been losing alot of hair. No one would notice but her, but still I was stunned.

Anyway...trudging along...hope you are hanging in there.

PG, pain can drive your BP through the roof, especially chronic pain. I'm sorry you had to go to the ER. It would be great if they could offer you some help, but in my experience they just try to diagnose what you already know you have. Boy, thats a confusing statement :confused:. I hope you pain doctor has some input for you and can come up with a plan when the pain gets out of hand and you need something else. I'd be curious to hear what she says.

I'm hanging in here but the ON pain has taken on a new dimension since the RFA and its not a good one. I think I go to my pain guy next week and plan to discuss this with him and see what he says. I'm still having other pain as well so it will be an interesting visit. I've been procrastinating doing anything with my hair because of the ON and I guess I'll be holding off some more. I wonder what is causing your hair loss? Any ideas?

OH no EE!! THat is not good news! I wonder what they will try next? I am secheduled for a Cervical ranch block in 2 weeks, since the rhyzotomy was a bust.

I think the hair loss is either from the copaxone or stress or a combination of the two. It's been going on for months. I guess it was a good thing I started out with really thick hair or I might be bald now.

Yesterday I discovered I had been driving around with expired insurance on my car. It was due Thursday. I was cleaning up and found the renewal notice. I feel like an idiot, especially since I let my son drive when we were out doing errands and he's only got his learners permit. Good thing we didn't have a fender bender!! I have to go to the bank today when my dh gets home and get it renewed. THis is me on drugs.

My best friend said it was a good thing I didn't get pulled over because I can't walk a straight line AND I take morphine and they might be able to tell. I don't drive unless I can do so safely. I am very careful about that.

WEll good luck to us both this week with our respective pain docs. Let's see if we can get some more options.

*hugs*

Yes good luck to both of you for next weeks apts.
Know that both of you are in my thughts and prayers.
may all of next weeks things be positive ... (and as pain free if possible)

Thanks T. I'll let ya know how it goes tomorrow. I have an appointment Monday with my MS specialist too. I'm taking my best friend with me to help make sure I get all my questions answered. (Always good to have another set of ears.)

I have been working so hard for the last 2 weeks. I am exhausted. Friday is the last big work day before I hang up my hat. Unfortunately, (this is bittersweet) I am good at what I do and people want me to keep working. Right now, I just can't and because I don't want to disclose my medical stuff, it's making things really hard. I know I need to have some very firm boundries and not allow anyone to talk me into anything. Right now I just need to look after my health.

I think I need to bounce this stuff off my MS support group and probably my best friend. It's hard.

Thanks T and EE for all your support. You gals have been so kind to me. xo

Well this week is almost over and I have carried you both in my thougts and prayers... so EE and PG how did things go ?
PG :hug:i hope that link i sent you in message did not upset you or anything it was only ment to help thought maybe you could share it with doc or others who just dont get it. forgive me if it offended wasnt ment to.
hope to hear from you ladies soon ..and i hope it all good news.
EE the weather is yulk sending low pain to you.:hug:
PEACE
BMW

BMW, thanks for asking. I've meant to respond, but I've been having a bad week and you can imagine the rest. Apparently the RFA worked to some degree, but not for the ON. My pain doc was hopful, but it was in vain. He intends to do another round of diagnostic blocks below where this was done as I have several issues he is dealing with, all coming from the same area. He isn't writing me off which I really appreciate and he intends to keep at this with me. I just don't know how we'll deal with the ON and where I'll get any relief from. Its a real downer as I'm continuously getting beat up by these $&^#&*@$$ conditions. So, I'm not doing to well at keeping my spirits up these days.

PG, sorry to highjack your thread, but my response seemed more appropriate here. I also hope your doing well and that you're having better luck than I. Please post an update when you can.

I thought I should add that the RFA wasn't done directly to the occipital nerve, only to the cervical vertebrae. Apparently sometimes doing the RFA to the facets yeilds some benefit to the O nerve, but not in my case.

Hi Ladies,
No worries-not upset with you or anything. I was offline for a few days. Let's see...well, the last few weeks have een really tough. I have ended one part of my job because the stress it was causing me was just too much. (I am self employed.) I am not terribly sad about it-I had a good run and it was time, I was just on the verge of burning out, so the timing was okay.

I had a P/t job, just for my amusement really and perhaps to ease some of my guilt about contributing to the family coffers, but alas, that too ended, rather unexpectedly. The company was seized and shut down and that's that. Nothing like having the rug pulled out from under ya. I was glad I wasn't working the day it happened.

In the meantime, I have seen my pain specialist about a week or so ago and she did another round of shots in my head. It had been awhile since I'd had them and OWOWOWOW!! Horrifically painful. But it does work to some degree, so I put up with it.

I also saw my MS specialist and I am not in a good place with my MS. THe headaches (ON) is from the MS and I am not responding to the MS drugs like we'd hoped. I have had to make the difficult decision to opt for chemo. They are setting up the pre-chemo workup and I will likely being treatment about Mid-April. I am devistated that this is where I am at less than a year after my diagnosis of MS. Nothing I can do about it though.

The chemo will be less than if I had cancer, but the risks are the same-risk of cardio toxicity-damage to the heart muscle if I have too much and the risk of developing a type of leukemia. There's no way to know if the chemo will work, no way to know how long I will be doing it (but it's a max. of 2 years worth of treament for a lifetime. This chemo is once every 3 months.) I am scared out of my wits, but what other choice do I have?

So yeah, alot on my plate and none of it good. Oh and for extra fun, it looks like I've developed some sort of infection. The smart money's on kidneys, but I am waiting on lab results. I am on cipro though. Yes, just a whole lot of joy in this camp!

I am supposed to have a cervical medial branch block done next Friday, but I think I am going to cancel. I don't think it's going to help. I see the pain specialist on Thursday so we'll discuss it. I don't think my poor bosy can take any more stress right now.

Still no appetite and I've dropped a bit of weight, but nothing I can't afford to lose. I'm good for about another 40 lbs. before it becomes an issue.

Okay, enough about me. I am going to go read and catch up with you gals. Thanks for checking in on me and sorry for being so quiet.

Oh EE, so sorry to hear you are not getting any relief. :( Don't you wish you had never even heard of the O nerve?

Hugs to you.

:hug:PG, you really have your hands full:hug:. I do hope that there is a good probability that you'll see some improvement with all of the treatments you'll be having. I bet the ON shots really hurt because your nerve is really angry. My pain doc always numbs me before any of the blocks and I assume its standard practice. At least I hope its standard for your sake. I don't blame you for wanting to hold off on the medial branch block. I'm scheduled for one in another week and they always leave me with some residual pain from the needles, but your schedule is somewhat overbooked, IMHO. I find that I just can't take too many different procedures back to back. It wears me down.

You've had to make so many decisions in a short time. I wish I knew more, but I don't have any experience with MS. I hope you find some time to do something for yourself. A little pampering can do wonders for the spirit. Take good care:hug:

THanks EE. I was able to talk to someone in my MS group about the chemo-she had the same chemo I will have. It made me feel better because she said it wasn't as bad as she thought it might be.

I am feeling pretty fragile right now with this Kidney infection. (Assuming it's kidney-still waiting on my labs) I am suppsed to go back in if I don't feel better by tomorrow. (I am on Cipro) RIght now I feel, like I got run over by a mac truck. I don't think I would be able to handle surgery right now. My headache is trying to flare right now too, so I am having to take the breakthrough pain morphine to stay ahead of it.

Can't remember if I said or not, but my MS doc also gave me a script for torridol in case I get the headache at the front of my head so I don't have to go into the ER. THANK GOD. I never want to go through that again.

On a happier note, rent Secret Life of Bees. If you likie Fried Green Tomatoes, you will like this one. It's a beautiful adaptation of the book (which I've read-I am a big Sue Monk Kidd fan) and the cinematography is gorgeous. The soundtrack is also artfully melded to the story. I can see why it got so many nominations. Dakota Fanning was excellent in it, as was Queen Latifa. I watched it last night in bed on my portable DVD player.

I'm going to have to pick up that movie this week as I could use something really good to watch. I'm glad they gave you a RX for torridol. I had that once in the ER and that stuff works wonders and doesn't mess with your head. I'm glad you have a group to knock around treatment options with. Sadly, my groups are online, but at least by having them online, I have something, lol, otherwise I wouldn't have anyone to bounce this stuff off of. I'll reach out to you mid week to check up on you. I hope the cipro does something for your kidneys and you start feeling some relief. Hang in there and take good care!

*Laughs* I am a movie junkie. If it's new, I've more than likely seen it. I will tell you right now DO NOT rent Miracle at St. Ana. The subtitles almost killed me. They were tiny, printed in white and moved at lightening speed. I could barely make them out and ended up with a headache from trying. It was the most annoying and pointless movie I have seen in awhile. And long-almost 3 hours long!

PG, how are things going with you? I'm still the same so nothing new here. My ON was really bad yesterday. I felt like curling up into a ball and staying hidden from the world, which is about all I did. I hope your doing well. Post when you can :)

I have something to share, but I am not going to post it to the board. I will email you and T about it privately tomorrow when I get a spare minute.

It's been a rough week.

PG I am thinking of you lots and lots, I replied in message but have not heard from you. I hope some kind of light is starting to shine and guide you out of the dark.
:hug: :hug:
dont give up looking for help and dont give up on the stim.
keeping you in my thoughts and prayers.!!
PEACE
BMW

Thanks T, I am still here. I have just been lying low as I have not been feeling great. I have dropped about 7 lbs. in the last 2 weeks-the meds are keeping me from feeling hungry and so I have to force myself to eat and drink. I have about 40 lbs. I can drop safely before it becomes an issue, but my blood sugar gets wonky and then I feel queasy. It's not fun. I've been stressed about the whole situation I told you about and I am now preparing to go through chemo to treat my MS, which is another stressor. I will likely be starting the second week of April, if I pass the pre-chemo workup.

The funny part is, I quit my job (self employed, but still) to reduce my stress and then all this stuff happens and I am more stressed! Of course none of it is helping the ON. I have another freezing shot in a few days, thank god. You know it's bad if I am "looking forward" to getting needles in my head! Who'd have thunk it?

Anyway, thanks for checking up on me. How is Destiny doing? I haven't had time to check. Hope she's recovering okay. Hope you are doing well.

Hey gang, I am still breathing. I started chemo for my MS about 2 weeks ago. It was pretty awful-I was so sick and it took me 4 days till I could be upright, awake and eat something. I talked to my oncologist and hopefully we will try something better to manage the fall out for May.

My head is still trying to kill me and my pain specialist decided to be absent and unavailable without warning me, so by the time I see her in about a week, it will be a month since my last freezings. Usually I see her weekly. I am in horrific pain tonight. The headache decided to ramp up yesterday morning and though I am taking meds round the clock and a dose of torridol on top of it, it's not settling. :(

THe ONS thing is still a mess. THe new idea being bandied about is sending me out of province for treatment. I have no idea where they think I would get the money for that-it's completely insane when there are docs right here who do the same damn thing. I am *SO* not impressed with the redtape and politicking. I've about had enough of this nonsense.

Anyway, as you can see, my disposition is not great right now. I am feeling wrung out and now I have some girly problems which sounds like it's going to result in some surgery (oh joy!) and of course adding yet another doc to the roster.

I hope you are all faring better than I am. Just thought I would pop in and wave so you wouldn't think I've dropped off the face of the earth. (Though some days it feels like it.)

Prairiegirl, I'm glad you posted but I was hopeful that you'd be in better shape. I just had another direct block to the ON and this one only lasted a day. So, I'm still dealing with it.

Take good care and :hug: