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