I so hear you on the "I feel like some sort of autoimmune freak. I'm tired of...", Trish.

The doctors don't seem to care, the drugs don't work and often make things worse instead, and cheese is off the menu (literally) because of digestive issues. I'm about ready to try the wine though...and a lot of it, if you get my drift :eek:.
I wonder if many MS affected people are driven to drink?

How's your digestive stuff doing these days? That's some kind of an added bonus isn't it?
Mine's mostly been holding up OK, but I'm taking way too much Ibuprofen for joint, muscle and neuropathic pain, so its been letting me know that I need to back off. Its down to choosing which area gets to have the pain and inflammation. Take the Ibuprofen and the body pains are less but the guts react, or don't take it and the guts settle down, but the joints, muscles and nerves fire up.

My left thumb joints have been subluxating for the past few days, which is a new Sx, and exquisitely painful, both when it does it and to have to pull on it to realign the joints. I'm hoping that it just got injured and that I didn't feel it due to numbness in the area, and that it isn't the beginning of rheumatoid arthritis...yet another auto-immune disease. Isn't that stupid? The area has been numb for ages, but now hurts like crazy too. Try explaining that one to a doctor...or anyone else for that matter.

On top of all that, I've been getting electrical-type zaps in the right side of my face around the jaw and cheek. I've already lost some of the muscles of mastication on the left side after suffering a seizure a couple of years ago. Now Trigeminal neuralgia keeps coming to mind with every Zap, and again, I can only hope not.

My MS neuro hasn't come through with alternate scripts for the fatigue or the pain after the two that we've tried caused too many side effects, so I'm about to give up on him...again.
My PCP might have some ideas to offer, so that's my next stop, but I'm not very eager to go in; just so that he can look at me like I have three heads.
So I hear you on taking a doctor holiday too.

Its getting progressively more difficult to keep a positive attitude, without also noting that doing such requires voluntary delusion and a whole lot of denial.
OK...that's my whine, sans cheese for the day.

Passing the whine and cheese tray...

With love, Erika

Get the cheese out, and hand me a huge bottle of wine (actual wine). I'm going to need it.

My mom is in the hospital.

My dad had to take her there last night. She's been having trouble breathing the past few weeks, and we thought that it was asthma. Apparently not. She's got some sort of internal bleeding somewhere. No idea what's causing it or where it is. They're going to do surgery to look for it.

Her hemoglobin was down to 5. (normal is 12, at least for a woman)

I haven't slept yet. My back is killing me, and my shoulder hurts. I think being tired and exhausted is ticking off the MS. (numbness is a bit more numb)

Going to try to go to sleep in a minute if I can walk to the bed and collapse onto it.

Aw, I'm so sorry that your Mom is in the hospital. It sounds serious, and that means more stress for everyone.

I sure hope that you can catch some sleep and that your symptoms settle down.
Gee whiz...when it rains, it sure does pour!

In my thoughts for better days Erin. :hug::hug::hug::hug:

With love, Erika

Erin, hope they find out what's going on with your mom quickly…hold steady there...:hug::hug:

Sounds as if we are all in a funk about our symptoms and not getting much support or relief from the medical community. I go to the neuro, who is highly regarded, and he talks on and on about other patients who are in such bad shape. I reall, feel bad for them but I'm here for ME. All they can do is play chess with meds…
This bactrim is giving me a headache…grrr. Only one more day on it. I am hoping it isn't a prelude to a cold-DH is coughing a lot, but it's more an end-stage cold.

Well, I like priusutto and brie on a baguette with my whine...

Erin,

I hope they'll figure out what is wrong with your mom and get her all fixed up. It will be hard on all of you. Try to rest if you can. :hug:

Ok my whine for the day:

I called my doctor's office to see if there might be something wrong with my lower back because I was having a lot of pain for a few days in addition to walking problems. His nurse called me back and said they called in hydrocodone for me. :confused: I want to work for goodness sake! Then I said, maybe I should get a note so I can sit down at work and she said that shouldn't be necessary! :mad: I stand for nine hours straight with only a break for lunch and bathrooms, maybe I need to write them a letter explaining that. And he does not want to see me for four months.

If I need a chair at work to sit between customers, will I need a doctor's note or one from a lawyer? I'm so frustrated. And I still haven't talked to my boss. :rolleyes:

Ok, that was a huge bordeaux, I know. :D

I was all ready with a big stupid whine, but after reading Trish's, Erika's,
Wiz's, Debbie's and Erin's horrible pains, Think I will just sulk over to
the corner and count my blessings.

I love you all. :grouphug:

Oh come on Sally,

Don't be a party pooper...join the party. This isn't a competition. You know that.:winky:

Its an opportunity to off load in a safe environment (Safe for others...because sometimes I know that if looks could kill, some people would be dead tight now :eek:).

Here's your cheese, now get going with your whine :D

With love, Erika

Tight, yes - right no..:D:p

I'm being really careful with my diet. I tried this diet my brother told me about and I did really well on it. Still had all the joint stuff but my digestion was working well until I went off the diet and ended up with diverticulitis again. It's really a simple diet and I never felt hungry on it. It basically eliminates all foods that are known to be be allergenic (dairy, eggs, gluten, etc.). It's called the UltraSimple diet. I'm back on it but modified a little. I still have the lemon and olive oil "shot" in the morning, a smoothie with rice milk, rice protein powder, flaxseed, and fruit (I don't use bananas because I am allergic to those), then vegetable broth mid morning, 2 cups of well cooked veggies and 1/2 cup brown rice for lunch, veggie broth mid afternoon, and 5 oz of protein (chicken or white fish for me) with 2 cups of well cooked veggies and 1/2 cup brown rice. If you feel hungry you can have another smoothie in the afternoon or after dinner. The kinds of veggies you can have are specific but definitely a good variety. It really seems to help me. I didn't read the book but this diet is said to create a more alkaline environment in our body which helps with inflammation and disease. I did have more energy by the end of our 7 day diet. I stayed on it a couple of weeks longer than my brother and SIL and I was feeling pretty good until I started introducing other foods. Gluten seems to be a big no-no for me, even in small amounts.

Erin - Saying some prayers for your mom as well as you and your family.:hug:

I'm not sure what the joint stuff is but I am leaning more towards the rheumatologist dx of lupus. It does seem to fit and I'm wondering if some of the digestive issues I'm having are related to that. It just seems that the diverticulitis is inflammatory in nature and not so much an infection.

I try to avoid ibuprofen if I can and try to manage without it. It upsets my digestive system as well and that doesn't feel too good. It's a catch 22 and finding something that works is hard. I am planning on starting the Plaquenil soon as I just don't know what else to do. However, they say it can take up to 6 months to start working with some noticeable difference within 2 months. Sigh. But I'm really at a loss. I hope you too find something that will work for you.

Wiz - What the heck? They won't give you a note that you can sit down but feel it's okay for you to go to work on Percocet? Huh?!?! :p I've only taken hydrocodone once and it knocked me out cold. Never again will I take it, if I can avoid it. I hope that your manager can help you get in to a management type position soon. How about doing online sales/support? Would the pay be the same?

Sally - Sorry if my whine was a little over kill. I just laid it all out there because, well, it sometimes just sucks for all of us and I know many of you can understand where I'm coming from.

Erin, so sorry to hear about your Mom. Will your Dad be able to come home and get you to take you to see her?

they did some sort of scan of her esophagus at the hospital today. Apparently they didn't find anything there, so guess what she gets to do tomorrow? They're going to take a look from the other end.

Hoping that it's not anything horrible, but if her hemoglobin was down to 5, yeah, that makes me wonder.

My dad is going to go up there tomorrow afternoon, and then he's going to come home to take me to my doctor's appointment for my shoulder so that I can find out what I did to it and see if I can fix whatever hurts like crazy in my shoulder.

I didn't end up falling asleep today until about 10am. Then I slept until about 530. But, I kept getting woken up every hour or two from people calling me.

Hopefully I sleep earlier tonight. I have that appointment with the orthopedist tomorrow.

forget the wine to go with my whine...let's break out the hard liquor.

I just canceled my appointment with the shoulder doctor. My dad had told me to take a taxi to the appointment. Well, since it's the day before Turkey Day, all the taxis are busy going to the airport. It was going to take too long to get the taxi here, since my dad only gave me the 30 min warning that he wasn't going to take me. Plus, he took off with the rollator walker I was going to use. (it's in the back of my car. He took my car to go back up to the hospital) Oh, and my dad didn't leave me any cash for the taxi. (I could have used a credit card, but I would have wanted to tip cash)

At this rate, my shoulder will be healed by the time I get an orthopedist to look at it. It hurts so bad right now, I'm going to take a bunch of tylenol and go back to bed. I only had 2hrs of sleep because the furnace repairperson showed up at 8am, I probably didn't fall asleep until 6am because my arm hurt so bleepity bleep much. I feel sick from not sleeping. Probably another good reason to cancel my appointment today.

hope the tylenol helps with the pain. It didn't last week. I ended up calling my regular doctor and did one of those mini dosepacks of steroids for the pain. Narcotics make me throw up.


So far at the moment, my mom is fine. She's still waiting for them to go looking around inside her today for whatever was causing the problem. So, still no idea what's caused that internal bleeding. I have a few ideas, but none of them are good.

they did that second scan of my mom. Didn't find a thing.

My dad said that they've got one more scan that they can do. She can swallow a radioactive pill, and then they take a picture (xrays???) and see if anything lights up.

He's pretty sure they'll be letting her go tonight, he didn't think they'd keep her over a holiday. So, hopefully our Thanksgiving is uncanceled. (I called the restaurant we were going to back, and re-made our reservation that I canceled this morning)

edit

ok, T-Day might still be canceled. They did a polypectomy while they were wandering around in my mom today checking her out. Apparently they tend to keep people overnight after a polypectomy, just to make sure they don't start bleeding from that. So, my mom might not be getting out until tomorrow morning, which means that we're probably going to miss the reservation that I just re-made for dinner.

Erin - Thanks for the update on your mom. Where did they remove the polyp? I'm keeping her in my prayers. I'm also sorry to hear you had to miss your appointment.

I don't know where it was. Just that it was inside there somewhere and they took it out.


as for my shoulder, omg...it hurts so bad right now that I'm about to start throwing up. The pain is going down my arm into my hand. It hurts really really bad and it's making me feel sick.

I tried doing one of the PT exercises they've been having me do. I have this pulley thing that you use to raise the sore arm up with the good arm. It stretches out the muscles and it's supposed to help. It didn't. Just made it hurt a lot more. I took 3 ibuprofen, but that's not helping it at all. I just want to throw up now for how much it hurts.

Maybe it is a good thing if we don't go out tomorrow. It wouldnt be good if my arm hurts so bad that it's making me hurl...or at least want to hurl. They might not want me to throw up on the waitress' shoes.


and as I was typing this, my dad called back. Now T-day is totally canceled. The doctors said they're worried about her kidneys now, so now they're going to check the kidneys for problems.

geeze, I'm just going to go get a hurl bucket, put my jammies back on, and see if there's a position that I can lay in that doesn't hurt my arm.

Erin - Stress, pain, and ibuprofen combined would make anyone's stomach upset. I hope you start feeling better and keep us updated on your mom.:hug::hug:

my stomach was already upset before I took the ibuprofen.

I'm hungry, but it's getting late, and all the places that deliver are probably shutting down for the night. I might make myself some soup if I can get the can open. Or maybe I'll make toast and jelly.

Erin surely they wouldn't discharge your Mom with a blood count like that. So sorry your holiday plans are cancelled.

How are you Erin?

I'm hoping that your shoulder settled down and you got some sleep.
I'm worried about you having to manage on your own with all that is going on with you and your Mom.
Did your Dad come home to help you last night...at least to get some good food to eat today for while he is at the hospital with your Mom?

With love, Erika

My mom is home. They never figured out what it was.

The pain in my shoulder spiked. It's the worst pain ever. Worse than optic neuritis, which means it's pretty bad.

I actually called the doctor last night when the pain was so bad I almost passed out.

Parents are home. They went and got me McDonalds.

I spent all day drugged on Valium for its muscle relaxer properties. I feel like crap. There are not enough swear words to describe the pain. My dad gave me a sling that he got when he got his pacemaker.

This is the worst pain ever. I'm going to go cry.

Oh gee...I'm so sorry Erin.
Will you get in to see your doctor soon? He needs to figure out what is going on, so it can be treated and help you with the pain.

Sending :hug::hug::hug: s
Yeah I know...a fat lot of good that does, but sending them anyway. :)

With love, Erika

That was exactly my thought Doydie! No way would they let her go home with a HGB of 5, unless they want a lawsuit. Did they give her a blood transfusion? When an HGB is that low, blood transfusions need to be started. Also, was she dehydrated? That can throw her blood counts off some. But, I still am having a tough time with them releasing her this quickly with such a low HGB count. I will continue to keep her in my prayers.:hug:

They gave her about four, maybe five units of blood before they let her go home. She was also on IV fluids the whole time she was there. They never did figure out what was wrong.

They wanted to make sure her hemoglobin count was normal before she left. They wouldn't let her leave if that hadn't been okay.

I just talked to my aunt, the nurse practitioner, she told me to take half of a 10 mg prednisone, and eat something. To let that sit for little while, and then take a pain pill. So I just broke a prednisone in half, and I'm eating an apple. I'm going to take a meloxicam a little later. Meloxicam is like ibuprofen but stronger.

The apple that my dad cut up for me was really good.

Wish I knew what was wrong with my arm. I was supposed to see the orthopedist yesterday, but my dad couldn't take me because he was at the hospital with my mother. I'm going to call the orthopedist office tomorrow and see if I can get on the cancellation list if anybody else cancels their appointments.

I would love to take a shower right now but I don't think I have it in me. I'm hot and sweaty and my shoulder hurts. Maybe once the prednisone and pain pills kick in. I can try one.

Going to go see if I can avoid throwing up now. I slept all day today. I hope I can sleep again later.

Do you have a shower chair? Sure hope you feel better Erin.

yeah, I have a shower chair. the pain is just so bad right now, I cant do anything but sit here and cry

its pretty horrible right now, all my typing skills are out the window right now, unless I use my ipad, wich I'm not on at the moment. at least I know it's not ms related. it's an actual injury

my stomach feels weird...like it's full of something heavy. I also feel really really warm, but I don't have a fever. Shoulder is still hurting like mad. cant sleep, but then I did sleep all day on thanksgiving. keep feeling like I have to go to the bathroom (#2) but nothing is happening. and I just feel bad.

someone please tell me I'll feel better someday

Edit

Think it's all the ibuprofen I've been sucking down that's caused the stomachache. I took a tummy pill for it.

Erin, so sorry that it's so awful for you. :hug:

It really sounds like you need someone to look at what's going on. Can't your doctor's office get you in there. even if it's not the doctor but a PA or an NP?

I'm trying... on hold with a woman who will not let me finish a freaking sentence


edit

now I'm sitting here in pain, waiting for a callback

So sorry Erin. I hope thing get better for you soon. I'm
concentrating on it. Can you feel it? :D:hug:

My whine for the day is leg weakness and that feeling that a Charlie horse is about to start in my calf. I call it a 1/2 Charlie horse. I did a lot of flopping during the night last night and my body is tired. My joint/tendon issues have now eased up in some areas but are flaring up in others. UGH!!!!

Passing the whine and cheese . . .

I have found that if I walk very slowly I do ok compared to the past few weeks. As long as I don't pick up the pace but do a slow stroll, I'm pretty good. I probably look like I am being a slacker in the customers' eyes, but oh well!

DH just had to stop at Walmart for the $99.99 TV last night. He said, "just park here, I'll go in and pick one up, I'll be right out." :p

He took two hours to get it! He also got a blue ray player for $23 but wait until he finds out how much it is to rent the movies! :D :rolleyes:

It was my good story today at work when waiting on customers. ;)

I am going to stick with the local clinic for my risk assessment with the oncologist. I had a new customer today who was being treated for colon cancer in Chicago, and she had started with a local doctor and they sent her there. So maybe I won't need to go out of town, but since they did that for her, they might do the same thing for me if necessary.

The poor woman went through surgery and has to have a resection (?) and is also going through a divorce. She was so nice and I felt so bad for her, and had to give her a big hug and wish her luck next week. Moments like that make me feel great about my job.

Ended up going to the er. Got treated badly. Still in bleeping pain.

My aunt, the nurse said she thinks this is a pinched nerve. No idea what nerve. My aunt is mad about how I was treated at the er. She wants me to complain about it to my insurance company.

That's excellent Wiz. I'm so glad that you stepped out from under the sales hat to give your client a hug. I'm sure that your compassion, understanding and tenderness, meant a lot to her. It is so easy to feel isolated, as we all know, when one is going through a rough patch...and she sure sounds like she is going through one.
Sending well wishes and prayers to her.

Erin,
I think that I've posted these links before but here they are again. You might very well have a pinched nerve that is referring pain to the shoulder and arm. That would explain it not responding to regular pain medication. Nerve pain requires narcotics or something that affects the gaba/pre-gaba neurotransmitters.

Common sites of nerve compression that refer pain to the shoulder are at the spine due to disc protrusion or herniation, and in the neck due to muscular spasms of the Scalene muscle group.

Please check the links as there are photos of where Thoracic Outlet pain is referred to. If the pain is due to the Scalene muscle, the pain distribution illustrated will look like the same distribution that you are experiencing.
The good news is that nerve pain from the Scalene muscle group, responds very well and quickly to physical therapy and/or massage therapy.

There is a link at the bottom of the list of links that gives some info on how to treat the Scalene spasm and trigger points; so you can try to massage it or treat the trigger points your self straight away.
You might also check with a PT or Massage therapist to see if they are familiar with treating Thoracic Outlet Syndrome (TOS) and/or Scalene Trigger points, also known as Scalene Anticus Syndrome. If so, maybe they can help you with it.

In the mean time, if it is TOS from either cause, while laying down or reclining, putting the back of the forearm against the forehead or resting the forearm on the top of the head will often relieve pressure on the nerve, as this position takes the Scalene muscles as well as serves to broaden the thoracic outlet through which the nerves that supply the shoulder and arm pass.

Hope that this helps and that you get relief soon. Nerve pain is just so nasty. :(

With love, Erika


Thoracic outlet syndrome/Scalene muscle spasm & nerve compression

Overview of anatomy, injuries-causes of dysfunction, symptoms, treatment:
http://www.mayoclinic.com/health/tho...ndrome/DS00800

http://intraspec.ca/tos.php

http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome


Scalene trigger point therapy
http://www.triggerpointtherapist.com...troublemakers/

Just got back from the second visit of the day to the ER

What to different hospital, they were much better.

Doctor said it's Adhesive capsulitis

http://en.wikipedia.org/wiki/Adhesiv...is_of_shoulder

Ouch! :(
That truly is a nasty condition to have.

Can you move your arm away from your side, or is it "frozen"? This much I know. If you can move it, do...even if it is painful to do so; because if you don't it can freeze up over night and that is much worse.

What did the ER doc recommend?
Can you get in for some physio? Ultra-sound therapy will often decrease the inflammation and the pain. Massage therapy will often get the mobility back and reduce the pain too. Massage to the neck and back will also prevent compensatory spasms and pain in those areas.

Hang in there Erin. It does get better with or without treatment; although it can take a while.

With love, Erika

Erin,

Sorry to hear about your shoulder problem. I hope you can get some therapy for it and relief for the pain.

I hope your mom is doing ok. Did they ever figure out why her blood levels were off? I can't imagine just giving her blood and leaving it at that. Something had to cause it.

he said to get physical therapy, which I was already doing, started pt for the shoulder last week, just havent done much yet because this week was so screwed up. I don't know why the pain kept getting worse.

I got another dosepack of steroids to do. I did the first dose of that a little while ago. I can feel it kicking in now.

The pain is a bit more manageable now. The doctor said I probably needed the morphine to get past the worst of the pain. Still hurts a lot, but the pain isn't making my eyes cross anymore.

I did a couple simple stretches that they'd been showing me at PT last week. Think that helped a little. Can't wait for it to heal.

Wow Erin, when it rains it pours. Sorry but hopefully they now know what your problem is and can get a plan of action and get you back on your feet again and into that car with hand controls. Erin wants independence!!!! Good luck

I'm glad they got the pain to break a little bit on the second visit to an ER. I have to call the insurance company on monday tho. They rejected my insurance last night. No idea why. I guess I can expect that to keep happening, especially after the new year.

My aunt told me she'd help me call them (she's a nurse, and knows a bit about insurance. The first hospital I went to, just parked me in a room for a couple of hours and ignored me. Didnt even have a doctor see me. They sent in a PA. They gave me hydrocodone, and then got me out of there as fast as they could. Didnt try to figure out why it hurt.

The hydrocodone didnt touch it.

that was why I went to a different ER later that night. The pain was even worse by then. They got me in there pretty quick. An actual doctor came in and checked me out. He was good, and the nurse who took care of me was great. They explained that they had to break the pain cycle. That's why they gave me morphine and a muscle relaxer. I'm still in pain, but not as bad as it was. I'm never going back to the first hospital.

My aunt thought that the first hospital dropped the ball. She said I should have gotten an injection of morphine there, or an IV with morphine. She thinks if I call the insurance company, and tell them I wasn't happy with how they treated me, and tell them I had to go to another ER that night, they might be able to get the insurance company to not pay that first hospital because they didn't seem to do anything for me.

Then maybe they won't reject my insurance for the second trip to the ER. My aunt is going to have to help with that. I won't know what to say.

She was pretty disgusted with what she called their standard of care.

Hope I can at least get the insurance company to pay for the second visit.


when I was leaving, I told the nurse that they were really great and thanked her. If the hospital calls to do a survey I'm going to give them a good review about it. She seemed surprised that I was thanking her. People must not do that very often.