Plans for the first week of the New Year?

[Heiferly]

I am crazy busy trying to shuffle around medical records in anticipation of my CC appointment this month.  I also have two doc appointments on Thursday and two on Friday.  Whee!!  I just got back from a week of vacation (visiting family and spending time with my SO), so my head is still spinning and I have half my wardrobe tied up in some phase of laundry or another at the moment.  I *think* I'm done unpacking, but I'm sure I'll realize I've missed a few things at some point.  I need to take down the decorations but I'm trying to just ignore them.  We finally got our first substantial snow of the year (very late this year for some reason) just in time to delay our drive home, and force me into a day of vacation without one of my narcolepsy meds because of some botched med-planning for the trip ... so I feel almost jet-lagged and take no credit for any incoherency in this post.  :-D

I hope you all are off to a good start in the New Year.  

[LivingInHope]

I don't have work insurance, I have disability medicare assigned to HMOs.  They don't cover splints, but evidently, the HMO I have now does cover the botox.  If the doctor knows what they are doing and your pain is muscular, you might have a shot, but if your pain is stemming primarily from your arthritis, I would not get hopes up too high about it.

I'm sorry you too have osteoarthritis and am glad you have totally cut out those things.  I actually had the doctor I saw last tell me I could eat apples or chew tobacco if I wanted to (I don't do either).  But I was told by a previous specialist of the same variety that I needed to be on a soft diet the rest of my life.  I wouldn't want to eat apples or do a bunch of chewing when I know that would cause me more pain and aggravate the joints.

[beema36]

I do have the osteoarthritis and I actually don't eat the hard or chewy foods simply because it hurts too bad. Its just not worth the pain.
I don't quite understand how botox would help. I suppose with some work insurance would approve it as they approved the splint.

[LivingInHope]

I had botox approved by insurance, but then the dr. I had seen who ordered the injections decided he didn't want to do them, I think because I went to others when he said the radiologist was wrong about which disc was w/out reduction... turned out the radiologist was not wrong.  The next specialist I went to didn't feel it would help me, I believe due to the osteoarthritis, though he said there were some who had benefited w/TMJ issues when he did botox injections.

  May I implore you based on my experience, if you have osteoarthritis at all in your TMJ, avoid the hard and very chewy things at all times, not just w/flare-ups? I am not seeing a rheumaologist for my TMJ arthritis and no dr. has suggested one for some reason.

[beema36]

Actually I have the splint they built for my mouth which I mostly use at night.  He also suggested trying botox treatments as says there is some success with that. I havent researched that as dont feel I can afford it. I am to do the soft diet during a bad flare and am to avoid hard foods or especially chewy things like caramel. My dr won't let me use ibuprofen as I have GI problems that he feels it may worsen. Since it is from arthritis are you seeing a rhematologist too?

[LivingInHope]

He made no suggestions on how to slow the arthritis, in fact, said I could eat apples and chew tobacco if I wanted to (not a tobacco chewer, by the way).  I've been told by a previous oral and maxillofacial specialist I needed to be on a soft diet the rest of my life and wear a flat planed hard splint, which I do at night and sometimes many hours of the day too more recently.  It's supposed to take some pressure off the joints.  Ibuprofen, if you can take it, I'd been told before is the drug that works for the inflammation.  Aside from trying to help with pain and inflammation, I know of no medications that can help with degeneration of joints.  I'm sorry you are suffering with severe jaw problems!  Has any doctor treated you for them?

[beema36]

I am sorry.  Those aren't good results. The only consulation is you know what you are facing.  Are there any treatments or medications that will slow the progress of the arthritis? I have the feeling I will be facing this same issue as have severe jaw problems.

[LivingInHope]

Got my results today of my arthrogram.  Advanced degenerative osteoarthritis leads the specialist to believe I am heading toward a TMJ replacement on that right side in an estimated five to ten years (I'm under forty).  The other side, which has worse arthritis than the right and a torn disc, he would not venture any kind of estimate on.  

[LivingInHope]

Thanks for responding!  The pain sure doesn't feel good and I know already there is some osteo-arthritis in that joint (the arthritis is worse in the other jaw joint) and previously, that right jaw disc was displaced with reduction.  Something happened on Sept. 11 of last year with my right jaw that made things go downhill.

[beema36]

LivingInhope, I hope you can get your results soon. I dont like to wait. Hopefully your results will be good.

[LivingInHope]

Yesterday afternoon, my doctor office called and rescheduled my arthrogram follow-up for next week on Thursday, so I am still waiting for results.

[LivingInHope]

I'm sorry both your son and you beema are having this constipation issue!   And I'm sorry Christy that going back to school didn't work out for your son, but I'm glad you are able to homeschool him!

I put carrots on the grocery list myself the other day, because I've had eating a mess of cooked ones help me before.   I've been having some constipation myself lately, though not to the same extent and have gotten more active in taking the things mentioned above (was supposed to be taking something every day for my bowels).  If the stool is really hard, I take a whole does of the clear-lax/miralax, sometimes by itself, but think I've done in combination too with the heaping teaspoon.  I have a relative who has to take metamucil more than once a day.  

If that combo doesn't work (of course run it by a doctor to be sure okay to keep you regular once you get cleared out) of half a dose of miralax/genereic combined with a heaping teaspoon of original texture metamucil/generic... I put a bit of G2 in the water for flavor (actually the GI doctor wanted it to be benefiber, not original texture generic metamucil, but I had found in the past benefiber didn't work for me) and the doctor can't help with it:

you might even look into going to a Chinese herbalist who knows what they are doing.  I took an herbal mixture in the past that really got me moving (turned out to have high natural estrogen in it though, which wasn't good for the endometriosis I later learned I had).  When I took the Chinese pellet version of that herbal prescription (which was acupuncturist/herbalist prescribed Coptis Purgefire by Health Concerns) I'd been taking, it got me moving too much and I got diarrhea from it!

[LivingInHope]

If you do have increased intracranial pressure that came on suddenly, it is an emergency and you need to go to the ER.  You may want to do some research on neurologists in your insurance plan or in your area if your doctor has told you this is not a sudden onset emergency situation with CSF coming out your nose (see private message about checking up on doctors).

[beema36]

Christy I am sorry your son hasn't got to go to school. I will keep this in my prayers.
At least I am not alone in the constipation department.  I also have a problem with nausea with this issue.
Livinginhope I think I may try yout miralax and fiber program. Thanks.
lilmisposey I hope you find a good neurologist. This needs to ve addressed asap.

[lilmissposey8088]

I believe I do have Increased Cranial Pressure, but since I haven't seen the neuro yet, I'm not positive. All my symptoms fit ICP. But we shall see. I'm headed to my Family doctor today to get him to refer me to another Neurologist. I'm hoping I get lucky and find one with some knowledge on both issues and can treat me correctly.

[CHRISTYDRAKE]

My son is in the same boat as you.  He just went 2 weeks without a BM, even taking Miralax.  The doctors don't seem to delve into this problem.  And since his main complaint is nausea, this could be a contributing factor. I'm going to push for them to look at this more closely.  Intestines have a major motility issue.  He did have gastropareisis, but he passed his last gastric emptying test.


Also, day 2 of school and still unable to attend.  In the last 3 years, he has only attended 6 weeks.  We'll try a couple of more weeks before going back to full time homebound tutoring.

Christy

[LivingInHope]

beema:

   I hope the doctors do take this situation seriously and try to help you get more regular!  Fecal matter sitting in the colon causes an increased risk for colon cancer, so they really SHOULD try to help you!  I take a cocktail of generic miralax (usually a half dose) along with a heaping spoonful of generic original texture metamucil.  It's thought adhesions from laporotomies aren't helping the bowel moving situation.  Not having the urge must be very difficult for you, but still feeling the pressure.

lilmissposey-

Wow- to have your doctor MIA- that must be really disconcerting and disappointing!  And a CSF leak from your nose- not a trifling matter!  Do you have increase intracranial pressure?

[lilmissposey8088]

Glad to hear everyone seems to be doing pretty well after all the stresses of the holiday season! I am oh so very thankful that they are O V E R! We had a great Christmas and a relaxing new year.
This week I am in pursuit of a new neurologist. Mine is now MIA. I called to make an appointment Monday because of some problems I'm having and they informed me that he is no longer there. So, I googled to see if I could find where he is now with no avail. :/
I'm looking forward to getting into a new doctor and explaining all my medical conditions with him/her, and finding one that has a clue what POTS is. (high note of sarcasm)
I'm posting a whole new topic regarding my new and completely unexpected medical issue. Believe it of not I have a spontaneous CSF leaf from my nose. oy vey.

[beema36]

My GI issues are ongoing slow and I mean slow system resulting in severe constipation. My drs arent very helpful. I believe part if the problem is my meds along with slow transit coupled with ms has caused me to lose the urge. I am going to insist that they rule out a blockage then am going to get aggressive.  I think I need to retrain my bowels to work but have to get some relief in the meantime. I am thinking my drs wouldn't want to experience going almost 2 months without having a normal movement. Oddly I still have a good appetite which probably isnt good as I dont need to pack in anymore. :)

[LivingInHope]

I have my f/up appt. with the maxillofacial specialist about the arthrogram I had scheduled for Friday.  I got through the cortisone and didn't need the generic benadryl, thanks be to God!  I did get a migraine, I believe from the cortisone, so took medicine for that.  My jaws during part of this time had improvement with all the cortisone, but Sunday, they took a turn for the worse.

Sounds like Heiferly, you've got a lot packed in appointments at the last of the weekdays- I hope you don't get wiped out!

Beema- what sort of GI issues are you having... do you have a treatment that seems to be helping?

Christy- I hope your son can make it and get some friends who will be a positive influence in his life.  Even if he doesn't, I hope he can have/has some young visitors who he can/enjoys social interaction with!  

[Heiferly]

Beema,

Let us know how your EP checkup goes and everything.  I'll let you know when I manage to slow down.  :-D

Christy,

I'll keep you in my thoughts.  Hopefully school gets off to a smooth start tomorrow!!  Of course, do keep us updated.  

[beema36]

Christy, Will pray this works out for your son. I know he would most likely be much happier to get to attend classes with his friends.

[CHRISTYDRAKE]

We, once again, are going to attempt to get my son back in school. The semester starts on Wednesday and he is only enrolled for 3 classes at the 'brick and mortar' school (3 on line as well).  If he could just attend for 3 classes life would be so much easier...no homebound daily.

He also has his weekly psychologist appt on Wednesday night.  Other than that, a slow week.

Christy

[beema36]

Happy New Year! I am glad the holidays are over! I am tired.
I have my 6 month check with my ekectrophysiologist this week plus another dr appt. Still battling some GI problems but other than being worn out by holidays am ok.
Heiferly I think you need a snow storm to slow you down.lol you have been busy.