Greetings, Thanks, and My PCP's cool...

[Fluffysmom]

Hi, everyone.  

To all the new people that I haven't said hello to yet: Hi there, and welcome!

To Lulu:  Thanks for the tip about the generic Miralax; I paid $2.40 for a month's supply!  Oh oh, fuzzy-brain doubt; that was you that told me that I could get the generic form through my insurance, right?

Yesterday I saw my PCP; she listened, answered all my questions.  When I told her about my tight hip flexors and pain and possible relation to constipation, she got a gleam in her eye, and said that it could possibly cause some of my bladder issues, too.  

We discussed PT, depression, meditation, trying to balance exercise with nasty pain, possible support groups (which one do I fit in?), and my appointment with my new rheumatologist next Monday.

I took my first generic Ritalin this morning (Methyin, 5mg.), and just now took my second one.  I'm starting at a low dose to try to avoid tachycardia.

So far, the adverse affects have been increased tremors, tics in both upper eyelids, and not much alertness or energy.  I'm hoping as I adjust to the new med. I'll feel better, and then increase the dosage and my energy level and ability to focus.

She'll call in a new Rx if this works, with an increase in dosage.  Also a $2.40 Rx, as opposed to what Provigil cost.

I may have to switch back to Provigil for a day or two to get ready for my appt with my new rheumy; lots of records to get in order, and I haven't finished filling out the new-patient packet.

So, there's a little update on my life.

Hope to see more of all of you soon,

Kathy

[Fluffysmom]

Is it possible to loosen them up again, when they've gotten so bad?

If that patchy area on my thoracic is actually a lesion or two, could that be adding to the problem?  I always have so many questions.

I finally called my cardiologist's office to ask him to put it in writing that my PSVT couldn't have caused small strokes that caused the lesions in my brain that then cause my symptoms, as my MS neuro has suggested.

I had to leave a message, and hope that he will get back to me next week.  I'll write it all out in a letter; in a voicemail message it must sound kind of nuts!  I'm going to keep hunting those answers, by golly!

Kathy

[Quixotic1]

I missed your question about whether tight muscles could become spastic.  No, spasticity is a specific result of neurological damage - almost always in the spinal cord.  Tight muscles just get tighter and eventually can contract across a joint.

Quix

[Fluffysmom]

I'm glad that the constipation recipe helped your friend; it helped me for a while, then stopped working so well. My PCP said that prune juice is a stimulant, and it wouldn't be good to take it every day.  She did say that Miralax was safe to take every day, so I pretty much just take that.

Maybe I should switch to the "recipe" now and then, jazz things up a bit!  :o)

I've got a new notebook of records and MRIs, CTs, X-rays, chart notes, and all that ready for my rheumy; now I just need to finish the new-patient packet, update my medication list, print out my surgical history, and I'll be all set for Monday morning.

Then I can relax and have a fun weekend!  Tomorrow is breakfast with some soccer pals, and then Sunday is breakfast with some other pals at one of my favorite restaurants.  If the sun keeps shining, maybe I'll go to the Zoo.  A good walk sounds nice, and I haven't been to the zoo for ages.

Kathy

[essdipity]

Pls take a look at what I wrote in Quix's funny nutshell post. I'm wondering if your 'formula' stopped working.

Hang in there,

ess

[Fluffysmom]

I sent you a note with the name; Polyethylene Glycol 3550 NF, powder for oral solution, Rx only.  That's what it says on the bottle I picked up yesterday.

It is the same thing that Miralax is made of; if you read the contents on the Miralax bottle, it's on there.  Your doctor can write a prescription; it's generic, so it should cost a lot less.

I never thought of putting it in my oatmeal, thanks!  I always drink it disolved in a big glass of water before bed, and that's probably why I have to get up and tinkle an hour or so later.  I think I'll switch to taking it in the morning.

Happy Hug Day!

Kathy

[ShadowsSister]

The Miralax is granulated and I mix it in my coffee or hot Oatmeal, I prefer that to another pill. Still don't know the name of the "Less Costly" replacement...;-(
Have FUN FILLED DAY... IT'S FRIDAY>>> HAPPINESS TO ALL OF YOU WHO WORK SO HARD THROUGHOUT THE WEEK... for me every day is like a Monday or a Friday.
I think of Friday as my HUG DAY, because that's the day my daughter brings my Five Pari Grandchildren to see their Nana... Happiness & Joy..

[Fluffysmom]

When I took my Rx for my Miralax to my regular pharmacist, he said it wasn't made in generic since it was sold over the counter.  He called his order guy, and I called my insurance's pharmacy services, who confirmed that it was available in generic and on the lowest tier of the formulary.

My pharmacist (a really great guy) was on the phone for a long time, and his guy told him that there was no NEC (?) number for it.  I got my Rx back, took it to Costco, and they filled it, no problem.

Should I take the bottle in to show to my pharmacist, so he'll know how to order it?  He has a fairly small pharmacy, but he goes above and beyond: he delivers Rxs to my apartment building on his way home, for those who can't make it in to pick them up.

Does he make enough off such a  prescription for it to be worth his time and trouble?  Hmm.

Y'know, my PCP helped me feel more upbeat.  I was going to stop by and make a check-in appt. with the mental health practitioner at the pain clinic that I've seen a couple times before, but after talking to my PCP, I took the elevator up to the 3rd floor, headed for the pain clinic, looked through the door, and kept walking.

My PCP has known me for a decade, and reminds me that I have the skills to deal with what life throws at me.

Last night, my roommate said that she figured out what had changed in me; I've given up.  That she'd watched me go through knee and shoulder surgeries, a tonsillectomy that helped my lose 20 lbs in a month, other types of massive pain, and I always came though fighting, and coming out on top.

I felt kind of numb, and told her what the difference is between pain and fatigue, then what it's like to combine to two, then add spending a year trying to get someone, anyone to listen and figure out what's going on with me, and getting no where,  and then fighting for the one medication that helped me feel better.

Well, I woke up this morning ready for battle (Ada would be proud!).  I took one of my precious Provigil, have my records and supplies to organize them into notebooks spread out all over, and I haven't even had breakfast yet.

I just had to check in, and am glad I did.  

Oh, I have a heart question for you; I'll send you a quick PM.

Hugs,

Kathy

[Fluffysmom]

Well, let's see.  

You know that the Provigil was so helpful; last time I got it filled, it was $357.85 for 30 pills, so I broke down and tried the Ritalin.

As for the hips, bowels, etc; I've had trouble with constipation (thus the Miralax), and even ended up in the ER on Feb. 3, as my PCP's advice nurse thought it might be appendicitis.  Doc sent me home and told me to take and OTC laxative (he didn't listen when I said I took Miralax daily, I guess).

I took some stuff that cleaned me out totally, but still stayed nauseous and in pain for weeks; my PCP decided it was a flu, maybe causing swollen glands around the appendix.

In the meantime, I was seeing a physical therapist.  Two charts; one for my neck and shoulders, and one for my knee and lower back.

I had a substitute one day, and she discovered that my right hip flexors were "tight as steel", as well as my left IT band and hamstring.

On my left side I have quad atrophy, and on  my right side I have radiculoptathy from a disc protrusion, a hypermobile SI joint (w/arthritis), a hip labral tear, facet joint arthritis, etc.  Apparently all those issues that cause me pain have encouraged my hip flexors to tighten up on "guard" duty, which tends to hurt like heck and pull my  lower back into an unnatural position that makes it hurt even more, and the pelvic girdle rotates and causes nerve entrapment and pain down the front of my right thigh, the side and back of my leg.

I had the boss of the physical therapy place work on me during my next visit, and she said that with my muscles being so tight, it could cause not only trouble with my bowels, but also with sexual function; all those muscles being so tight don't 'release' properly, you know?  Anyone else ever have a painful orgasm because the muscles tighten up even more before they release, and by then they're so tight they don't properly release?

I asked if they could help me loosen up the muscles, and she gave me a sad smile, said they would try their best, that it would be better if they had gotten me when I was 20 (I'm 46).  I asked here on the forum if this tightness could be or become spacticity, but no one had an answer.

I've got stretches to do, willl talk to my regular therapist about the fact that I always end up hurting when I see her, and that I'm not as healthy as I look! :o)  One day, after she worked on my neck and shoulders, I left feeling like my brain was floating above my head, and my neck hurt so that I couldn't bend it down to my chest, so  I cancelled my haircut appt.  I had bad vertigo for several days.

Anyway!  On to my new rheumatologist.  I have dry eyes, mouth, sinuses, vaginal dryness, gastric motility issues, and several people, including my neuro-ophthalmologist have suggested Sjogren's Syndrome, though of course my blood tests were negative (at least 30% of Sjogren's patient's are seronegative).  I want this guy's opinion; see if I should have a lip biopsy to rule it out.

Then I'm going to suggest a complete workup for anything else that I could possibly have; my PCP suggested systemic sclerosis, despite my not having the hallmark symptom; she's trying to think of anything possible as my ms neuro is not helpful at all.

I'm getting together all the MRIs, X-rays, CTs; radiology and lab reports; anything that could possible help this guy.  I even plan on updating my Timeline for him.

That's about it in a nutshell; oh, speaking of urinating; when my PCP said that the tight muscles could be messing with my bladder, I had to tell her about the night before, when I woke up having to urinate, and couldn't stop myself from beginning the flow as I untangled myself from the covers, hopped out of bed, etc.  I had to wash a lot of towels and my sheet.  I'm getting good at laughing at such things now!

I'm trying to find a way to sit at the computer without those hip flexors tightening up; maybe I'll set an alarm to go do stretches every so often.  It's really difficult to stretch the hip flexors, but I do my best, and the hamstrings are easy.

Thanks for my pretty purple flower.  Oh, funny thought; I had Chinese food a couple of nights ago, and my fortune cookie said "You will be recognized and honored as a community leader".

I had to grin, and kept the fortune.

{{{HUGS}}}

Kathy

[ShadowsSister]

Hi There, I use Miralax and Benefiber, The Miralx is an over the counter drug, and it is Very costly, but it works ( for me). Could you pass the name of the replacement that is lower in cost. The Meralax with the Benefiber work OK most of the time for me... See you teach me some thig new almost every ay..
Have a Lovely Friday and a fun week end.  {{{{~!~}}}}

[Lulu54]

yep, that was me looking out for our wallets -
everyone else  - if you take Miralax there is a generic prescription version of it that is super cheap and will save you lots of money.  Ask your doctor for a rx,  

Kathy,
its good to hear you so upbeat  despite the continuing problesm  And it is great that your PCP is so approachable.

be well,
Lulu

[sllowe]

Hey Kath,

Boy, am I behind. I do remember the positive effects of Provigil on you, but not remembering your probs w/your hips, and bowels, or the Rheumy.....I need an update

You going on Monday?

Sorry to ask you to rehash goings on....but please do, if you can...I'll pick you a purple flower(ha/ha...that was funny)
(((hugs)))