Can anyone help? Feeling hopeless

[alliesmommy]

A little backround....

Officially dx with MS last week although neuro suspected for the last year and a half. I will be starting Betaseron in the next week or two.

I feel so hopeless.... I wake up everyday with my legs hurting ( hasn't ever gone away since my first attack) Within the last month all of a sudden my muscles in my arms( on the back side of my upper arms? weird, right?) are killing me, mostly my left. They really hurt when I am in bed. I toss and turn all night long and wake up exhausted which doesn't help the situation. Thank god I am unemployed ( lost my job in 09 and still haven't been able to find work, although now with this, it seems impossible)

Since I was just dx I don't want to be a pest to my neuro. The next time I have an appt is 3 mos from now. Uggggghhhhh... What am I supposed to do... I am in so much pain that I just sit and cry all day long. I really am starting to hate to go to bed and just don't know what to do. Do I call my neuro everytime I have a pain or go to my PCP?

[SNOOPY]

Hello alliesmommy,

As much as you don't want to be a pest it's sometimes necessary when having MS. Call your neuro and explain the pain you are in. There is no reason to live with so much pain when there are medications that can help.

Take care

[webbles 989898]

I have the pain in my arms and legs also. This might not help you but I take 2 Aleve when it gets back and so far that has worked better than anything else. Good luck and hang in there

[empirerecs]

I agree with Snoopy, you are newly diagnosed, the doctor should be understanding. Be forceful, if necessary, sometimes their "gatekeepers" can be unsympathetic - I've experienced that. I resorted to faxing my problems to my doctor and he would call me back. Once I lost my job I couldn't do that anymore but his nurse got the message that when I called I wasn't bluffing, something was wrong.

I was DX in 2008 and am just starting to get that kind of pain you are talking about in my hands, feet and calves. It's weird. I'm moving and will get a new neuro but he comes highly recommended so I'll talk to him about these new symptoms.

Take care and be a pest if you don't feel right or you are getting more symptoms - your doctor works for YOU and if he/she is not, find a new one (I had to do that too).

[hunterd]

i agree too, be a pain!!!! who is paying for the appt? i always have to remind of that, i`m paying so i`m the boss! and i get the pain in my feet and it is terrible! good luck and keep uss posted.

[Waydwnsouth1]

I agree with other posters, CALL your doctor. You are in pain so be a pain. I can relate to the leg pain. I have excrutiating pain in my legs. I tried everything over the counter all to no avail. I now take lortab 10 and 800mg ibuprofen and somedays all it does is dull the pain but it is relief. Call your doctor there is need to suffer when there is relief available!

[BigA]

Don't be afraid of your doctor. He wants to help. He's also very good at prescribing meds.

As for the pain, what you're feeling sounds like spasticity and is easy to take care of. You must take care of it, not for the pain, but you may stop certain movements. Baclofen is cheap. You can get a month's supply at walmart for $4.00.

You may need physical therapy too. It's important to move and stretch.

[Lexie]

I'm only at the point that my arms and legs are really really heavy and ache like the flu. At this point I am really just tired of going to doctors but if it gets much worse I will have to call. I don't have an appointment until December. Good luck and remember we are here for you!

[REG53]

Sorry for your dx of MS. I have pain in my legs that I believe is nerve pain. I take neurontin which helps.

I agree with all others call your Dr. and I hope you feel better soon.

[Spydre]

I agree with the others. Call your neuro. This is one disease where it works to be a pain in the tookas - the squeaky wheel gets the grease, so to speak. And he can't accurately treat you for symptoms he doesn't know exist. Not every ache and pain is going to be MS, but if you feel in your gut that it's from the MS (like knowing you didn't do anythign that would cause that), then call the doc.

[Windwalker]

A little backround....

I feel so hopeless.... I wake up everyday with my legs hurting ( hasn't ever gone away since my first attack) Within the last month all of a sudden my muscles in my arms( on the back side of my upper arms? weird, right?) are killing me, mostly my left. They really hurt when I am in bed. I toss and turn all night long and wake up exhausted which doesn't help the situation.
Since I was just dx I don't want to be a pest to my neuro. The next time I have an appt is 3 mos from now. Uggggghhhhh... What am I supposed to do... I am in so much pain that I just sit and cry all day long. I really am starting to hate to go to bed and just don't know what to do. Do I call my neuro everytime I have a pain or go to my PCP?

I agree with the others to some degree. The level of pain described in your post will not be taken away by Baclofen or some other spasticity med.

Definitely call your PCP before the Neuro., describe the pain you are experiencing and request some painkillers...hydrocodone. There is no reason to suffer like that...and don't take any guff from them if they suggest just spasticity meds...although I agree that you most likely have spasticity and should have been prescribed Baclofen at time of your Dx. Don't wait, get some relief. Good luck

[Tracy42]

CALL

I agree. Be a pest...This is YOUR LIFE! I write down my symptoms as sometimes I get toung tied when the Dr. calls back. They are availabe to us to help us have the best quality of life, but you have to be proactive!

I sent all the staff at my neuro's office heartfelt thank you notes (cause I CALL, lots!) and it is amazing how much nicer they are to me. It also makes it easier for me to call (I feel less guilty).

Hang in there and you always have this wonderful support group!

Sending prayers ~ Tracy

[lemstar]

Think of it this way:
Your doctor might even say, "You poor girl/boy, why didn't you call me sooner??!?!"

Call. This is what doctors do.

[alliesmommy]

Thank you Thank you Thank you

To everyone that responded.... This is a heartfelt THANK YOU.

I called the neuro and he prescribed Gabapentin. Starting 100mg at bedtime... I'm hoping it will help.

[Windwalker]

To everyone that responded.... This is a heartfelt THANK YOU.

I called the neuro and he prescribed Gabapentin. Starting 100mg at bedtime... I'm hoping it will help.

Uggghhhhh!