I called the physiatrist's office today, and asked the receptionist if she'd ask him if I could get some PT. I am so deconditioned that I think I need help trying to get back into shape. Problem is, my insurance only gave me about 45 PT visits, which I used most of them up earlier this year doing PT for the frozen shoulder that I had from last winter, and some other MS stuff.

So, I'm probably going to be paying that out-of-pocket. The receptionist said that she'd tell the doctor about my lack of PT visits left on my insurance. Said he might be able to write a letter to the insurance company and tell them there's a medical need for the PT. Not that my insurance will be paying it anyways, my deductible is so freaking high.

I'm still feeling really sick, which my aunt who is a nurse thought was kind of weird. She said that I've been complaining about feeling sick for months. She thinks I should get checked out again. Last time I went and had a blood test to look for problems the only thing they found wrong was my B12 was super low. (252) Back then, they were checking for the obvious stuff that you'd see on a blood test.

The only reason they checked the b12 was because I asked. I'd had a low b12 about five years ago (345). Was told it was normal then. But if you go by what people here on Neurotalk say, it was low. I will say one thing has gotten better since I found out how low that b12 was, and started taking supplements. I'm dreaming again. Sleep a little better too. Still get the insomnia, but not as bad as before.

Aw that just fetched tears to my eyes, thank you Sally. You're our hero too

Erin, I totally agree with Debbie and what the others have said. You need to be thankful for what you DO have in life, rather than what you DON'T. I KNOW its hard... I struggle with the same thing at times, as do we all but you are SO blessed compared to other people. I watched my nan suffer from MS (I was only 6 but can remember), I watched where she couldn't lift her head up to eat, had to be catheterised, had no dignity, couldn't walk etc. It was AWFUL, I wouldn't wish it on anyone. BUT she was a fighter, right until the end. Think yourself lucky that you aren't as bad as her and some of the others on here. I know you're only youngish but you've had a good life by the sounds. I had to endure all that at 6 years old and then became ill myself at 12, confined to a wheelchair for over a year and I'm still ill and undergoing tests now. I lost my friends, most of my family except my mom didn't understand, I had to give up school etc. It was horrible but its made me who I am today and I thank myself for that. Without this illness I probably wouldn't be who I am now, I wouldn't understand what its like to be ill and hit rock bottom.

I didn't mean for this to be a rant, sorry if it sounded like that (just got a lot going on at the moment - great nan been diagnosed with terminal cancer). I just know that its hard to 'see' the good things sometimes, cherish the little things because eventually you'll realise those were the big things.

I hope things start looking up for you soon.

To the rest of you, I hope you're all doing well - think about you often

Erin, I'm sure they'll give you more PT if your doctor is good at listing reasons why you need more...I was told when I was in PT for my knee replacement this winter that I only had 19 appointments YEARLY for PT. I'd gone through about 11 since January, and need to have my other knee done, I hope this fall. What will happen is that Medicare will audit the PT place and see if I warrant further PT. It doesn't matter that it's a different part of the body:roll eyes:

So I hope that you can get some additional PT. I also wonder if you aren't experiencing the symptoms of fibromyalgia. Your explanation of the pain you're experiencing sounds like mine. It feels like someone is running their long fingernails through my muscle fibers. It 's very different from the pain I get from spasticity. It also is exacerbated by lack of deep sleep.

And as for heroes, there are many here who've helped me with info and support over the past years...I wouldn't have been able to deal with all I had on my plate if it weren't for all of my NT Friends

I've had these thoughts rummaging around in the back of my head for a while. When I first met my neurologist I told her about my daily physical therapy routine and she replied by saying "or you could give yourself a break." During our most recent visit I talked about the new diet and estim therapy I was going to do following, Dr. Terry Wahls' protocol which she used to recover her own mobility and she scoffed. I also asked her about one of my new symptoms, swollen feet and little purple veins all over my ankles. She replied "It's probably because your always beating yourself up." But when I asked her to order me a motorized scooter she was all for that.

Sometimes I feel like my neurologist expects me to throw my hands up in the air and say "Yep. I'm done. I've got MS and I should stop working, stop parenting, stop being a partner to my spouse and just give up. I am MS now, nothing more!" Sadly there are only 3 neurologists in my entire county and they are all at the same practice so the choices are slim.

I'm very glad I am the type of person who when told "No" says, "Yeah, I don't like that answer I'll figure out a way."

Good for you.

Your Doc might be trying to say "don't be so hard on yourself"?

Erin - I'm sure you can get approved to have some more PT. It may take some fighting but if it is medically necessary and the doctor's can prove such, they really can't say no.

Ker0pi - I just posted on your Wahl's Protocol thread. I'm so glad it is working for you and you are finding ways to make things better for yourself. We often have to do that and be our own advocates when it comes to our health.

Ali - Sweetie, you have been through so much and despite it all you have accomplished so much. We "cybermoms" and "cyberdads" have watched you grow and are all so proud of you. Your tenacity is definitely inspiring and I hope everything works out for you.

Erin, I don't know if there is any kind of medical school in your area or not but I know in one of our local universities, the various schools, dentistry, physical therapy, etc that needs to have practical practice and offer days that they have clinics at a very cheap price

I got okay end for more PT. Starting that again tomorrow.

Not sure I'm making it to the appointment. Felt sick all night last night. Either a virus, or some food poisoning. Hopefully. Because I'm always feeling sick, I can never tell if it's the ms causing it. Or if it's something else.

Is it normal with ms to feel nauseous all the time? Shaky? It's constant. Doesn't stop.

There is something very weird going on. I only just noticed this, and it's never happened before.

Last night I found an unusually large amount of hair in the shower drain. On top of the drain. I know sometimes when a person is sick, hair can fall out. No idea what caused it.

And I feel worse now than I have been. Scared to call the neuro because he'll just tell me "that's what ms does" and not offer any solutions.

Feel like I'm dying.

no words of wisdom here except to say I am thinking of you.