[Erin524]

So, after a month's worth of PT (26 visits), I finished PT today. With pretty much no improvement at all, and in maybe two of the evaluations today, I went backwards, and got worse. The physical therapist told me that there really wasn't anything that they could do to help, and that I should go talk to the physiatrist, and then go find myself a gym to work out at. (I thought I was doing the PT to get to the point where I could go to the gym. I don't feel like the PT did enough to help me. I've done PT before where I actually could tell it was helping. The problem with the PT that I just finished, they had stupid scheduling practices, and sometimes they'd make go more than a week without PT. Doing exercises at home apparently wasn't enough for me.

So disappointed. Now I'm worried that I'm stuck...that I'm getting worse. Everything is going all to heck for me anyways. I have no friends. The only time any of my friends contact me, is to send me notifications to play candy crush on facebook. (that game is stupid). No one *actually* talks to me anymore. About the only people I know right now that I would consider friends is a group of girls on a crochet/knitting website that I go to. (we're all fans of anything to do with Sherlock Holmes) But everyone in that group all live all over the world. None of them are actually anywhere near me. So it's just all online friends.

I haven't seen my boyfriend in person since May. (he broke his leg, so was out of action most of the summer) I've talked to him on Skype, but other than that, nothing. I'm starting to think that I might not have a boyfriend anymore. I haven't talked to him for the better part of a month.

Think this is that weird phenomenon that I've read other people with MS have issues with. When you get diagnosed with a serious disease, you learn who your real friends are. Apparently I didn't have any actual friends.

I feel like the three doctors that I've been seeing (neuro, physiatrist, and my regular doctor) have been ignoring me and don't care. I was having issues a couple of weeks ago. Called the neuro to find out what to do. He told me to call the physiatrist. Called the physiatrist, and he told me he couldn't help me with the problem and to call the neuro.

Went to my regular doctor, and all he did was talk to me for about twenty minutes, and tried to calm me down from the stress of it all. Other than that, no help from him either.

When I first got diagnosed, the doctors led me to believe that they'd be able to help me with stuff. All I had to do was ask. But, when I asked, they don't seem all that willing. If it's something that they actually can not do, instead of telling me to go see another doctor. Tell me why they can't help me. If it's something medically impossible, tell me. If it's just something that's not part of their specialty, then tell me that too. The whole just leaving me in the dark about what's going on is not helping me at all. It's actually causing me a lot of anxiety.

I have all these issues with walking. You'd think the physiatrist would at least offer me options for things to do about that. Only thing he helped with tho, was getting me hand controls for my car. (actually got the Rx for the hand controls from another physiatrist, but the current one signed off on them for me once I got the training and bought the controls)

Just don't like the way things have been going. I've been feeling things get worse and worse, and when I ask for help I get nothing. If I wasn't depressed before, I am now.

[SallyC]

I'm so sorry Erin. You are just too young for this mean ***** disease to be
hitting you with both barrels. Let's face it, there really isn't a lot your Docs
can do for you. MS usually does not get better, except maybe for the short
term....It's a progressive disease. Maybe a 2 or 3 week in-hospital stay,
in a good rehab place?

I will keep you in my daily prayers that things get a bit better for you. I do
understand the friend thing. Except for one close friend, who's as old and
almost as infirm as I am, all of my friends are right here at NeuroTalk.
It also a lonely disease.

I'm sorta ok with it all now, what choice do I have, but I wasn't ok with it
in my 30s and 40s. You have every right to biotch and I'll be here to listen
and help if I can.

[Erin524]

I actually had mentioned a stay in a rehab hospital for a few weeks. My neuro had also suggested it earlier this year. But, when I mentioned it again to him, he seemed to be a bit dismissive about it. I tried to ask the physiatrist about it. Again a little dismissive.

I didn't bother mentioning it to my regular doctor.

A stay in a rehab might be good. I could call it a working vacation, because I'd probably be doing a lot of working. At least I'd feel like I'm getting something done.

plus, if I was away for a couple of weeks, we could use the time away to get the tile guy in to fix my shower floor where the grout failed. (this is the shower that I had built several years ago. And it wasn't built by the guy that did the one we put in earlier this year. That guy does much better work)

Only problem with taking off to a rehab place, is that my parents would be here alone, and I'm the only person in the house that's driving. My dad can drive some, I just feel better doing the driving for him with his eye being all screwed up right now.

[Sparky10]

What a frustrating time for you now, Erin. Pooh-poohed by doctors, ignored by the people you thought of as friends.

Work on the BF situation. Is he truly with you or not? Easy question. If he can't answer it quickly to your satisfaction, you can assume the answer is no.

If your parents' being alone and not able to safely leave the house is your main concern about a rehab hospital, is there anyone, anywhere, that they trust to look in on them and/or drive them around? Relative, or neighbor?

I'm sorry you feel so helpless, and that you feel you're getting worse. I'm kinda working toward those feelings myself here lately, so I can relate.

[Erin524]

It's just a pain in the *ahem!*

I want to try to exercise so that I can at least stand long enough in my kitchen to make a tv dinner, or walk into a yarn store to buy yarn. It almost feels like people are purposefully trying to hold me back by not helping me.

I don't feel like the therapy did much. They'd have me sit on a exercise bike for ten minutes, I'd go do another machine (leg press?) for another then, and then there would be maybe twenty more minutes of balance exercises.

Was kind of expecting more exercises to build up the muscles in my legs. I've been trying to do this stuff at home, but I don't know if I'm not doing those types of exercises right, or maybe I'm not doing the right ones. Just drives me nuts. I used 26 of my PT appts that are apparently allowed by my insurance, and I don't feel like I got that much use out of it.

I did PT earlier this year on my shoulder, and also had some PT for walking issues. But that was at a place that quit accepting my insurance right after I started. (insurance changed in January) so I had to pay out of pocket for that earlier one. I felt like I got more out of that place than I did from the place that took my insurance.

Now I'm actually considering trying to find a gym that might be geared towards handicap people if there is such a thing, and try hiring a personal trainer. Might get more out of something like that.

[doydie]

i don't know of a gym that deals with handicap people only but I have seen many handicap people at the Y and they have trainers with them. I don't know if they are Y trainers or a PT person uses the Y.

Have you tried to call some of your friends, I mean initiate the call yourself instead of waiting on them to call. Try to have a girl party at your house, paint each others toe nails or pop some popcorn and watch a movie. You could see who really wants to be there. I know that you have just started driving. Does your boyfriend live to far away for you to drive there?

[Erin524]

I literally have no friends.

Especially tonight. My boyfriend broke up with me about three hours ago.

I've had a really really really bad <multiple swear words> week.

[Lynn]

Ooooh Erin

My goodness, what a bad time you have had. I am so sorry about this, because I think you are amazing, and I hate to see you feeling this way.

I wish I could come up with some wonderful answer to your problems - sorry but I can't - I know I have lost friends because of my diagnosis.

Your boyfriend needs to have his @$$ kicked for this - easy choices from the cheap seats, but for those of us who are paying a much higher price, it's harder - and really hard for you right now.

I don't know what advice to give - I am not sure that anyone does - I just want you to know that I care and I am thinking of you.

Much love

[ginnie]

Even though I do not have your disease, I have read your posts before on NT. I just want you to know that you are not alone in spirit. You do have friends here, and that is better, than sitting alone. I care about you too, and I am sorry you are suffering with MS. My cousin has it too. Would neuro muscular massage help you at all? This was offered to me for another condition, getting function of my arm back. Maybe ask your doctor if he knows anything about it?
It gets the blood and nerves to move, unblocks so to speak. Very old form of medicine over a thousand years old. I didn't believe in it, but it has helped me. I wish I had some other thing I knew about that could help. I will keep you in my thoughts today. ginnie

[ali12]

Sorry you are feeling like this, Erin. I hope things start to improve soon for you... well as much as they can MS wise.

I've been ill since I was 12 years old and even before that dealt with my grandmother who had MS so I understand what you are going through. I KNOW how horrible it is to be ill at a young age, to not have people understand etc and the "friends" thing I definitely understand.

Because I became ill during my school years, it meant that all of my friends walked away from me. They didn't like the fact that I was in a wheelchair (hey, neither did I ) and they wouldn't make the effort to come over to see me (I was home schooled after a while due to mobility issues, horrible comments etc). It was awful and I was all alone, except for my parents. Even now, they still don't talk to me. I haven't heard from any of them in about 6 years.

I slowly started to realise that it wasn't MY fault they didn't stop around... I couldn't help being ill. I tried everything on my part to make them stay, inboxing them on Facebook etc. NOTHING worked. I slowly started to realise with the help of a Psychologist that they were never true friends. True friends don't walk out on you when things are tough, they are there all the time. Yes, it sucks. BUT I figured i'd rather be alone then have fake friends.

recently i had one "friend" go on a night out with me. I collapsed as I have heart and blood pressure problems. this so called 'friend' left me, on my own, with no one else around me knowing i'd collapsed and had serious health issues and I had to wait 30 minutes for my mother to get me... very scary. A few days later she told me that she wasn't bothered about the fact I collapsed, but she was bothered about the fact it ruined her night... well sorry that my mom asked you to stay with me until she got there. Needless to say, i haven't spoke to that person since.

I know its hard now, but you will meet new people. I've just started university and the people there are lovely, really accommodating of my health issues. Things do get better.

As for your boyfriend, again i'm sorry but do understand. I was with my ex 4 and a half years on and off. He knew about my health conditions, told me that he understood because he had mild Cerebal Palsy. It was only a few years down the line that things got nasty. Like your boyfriend, he wouldn't stop by to see me and made up excuses to go and see his friends all the time... or he'd stop by and tell me that he couldn't handle the fact I was ill, or that he treat me horribly and then would end it. What I didn't know was that he was cheating behind my back (or at least attempting to). We've been split up 2 months fully now, its hard as it was a loonngg time I spent with him and I thought he understood me more than anyone (he'd go to hospital appts etc) but I guess sometimes things just don't work out. Its difficult for us dealing with an illness, let alone other people and sometimes its best to get the stress out your life, we have enough of it.

I would look into relationship counselling etc IF that's something he thinks might help. My ex would never go down that route.

I hope things improve soon. Sorry I cant be of much help, just know that you aren't alone and that someone understands.