HELP!?

[cjohnstone]

I have been on Avonex since December 2012. They found a lesion on my brain and one on my spine is October 2012. For the past couple weeks my muscles have been so sore and then this week I started getting a burning sensation in random parts of my body.

I have also had a constant headache for the past week mainly in the front of my head and my eyes ache too. I called the dr and they increased my neurotin and did some lab work. They are debating doing another MRI.

Has anyone else experienced this. Could this be from a new lesion?

Any thoughts or advice would be appreciated.....I can't take this pain anymore

[Seasha]

Hi cjohnstone - I'm so so sorry you are having pain at this time, but it's hard to determine if you are having another flare based on your sx. Have you mentioned the increase in pain with your Doctor?

I'm sorry that I can't help you, but I moved your post to General Q and A forum so it's more visible. Take care of yourself

[CaroleL]

Hi Cj,

I been getting the burning in random spots too. As for the headaches, I had the worse headache of my life this week. I have problems in my neck that could explain this. Or I was thinking that allergy season is upon us.

Do you have seasonal allergies? I'm going to start my Arius this week and see if it helps the headaches.

That being said, if these are new symptoms to you, I would call the Neuro and see if he'll do that other MRI. Sometimes new symptoms appear before a flare but nobody can confirm that except your doctor.

Have you tried Advil for you muscle pain? I find that when the pain doesn't go away with an increased dose of neurontin, the pain doesn't come from the nerves, therefore non-ms pain. May be worth a try!

I hope you feel better soon! Let us know what happens.

[cjohnstone]

I have tried over the counter meds like advil and ibprofren but nothing works. I haven't noticed a difference at all with the increase in neurotin. My head is just pounding non stop, it feels like my eye balls are going to pop out of my head.

I talked to my neuro on Friday, I am going to call again on Monday to try and push the MRI, I am wondering if I have a new lesion causing the constant headache

On top of the pain I am struggling with feeling guilty. I have three young kids (10, 5 and 2) and a husband. I've pretty much have had to check out this week I have been spending most of my time on the couch. I feel like a horrible wife and mother.

[mjan]

Oh how being a mother makes this doubly hard.. so sorry for all your pain. Try REALLY hard not to feel guilty as it serves NO PURPOSE right now and uses up much needed energy okay hon?

This is when you need a plan B to ask for help. Dishes, laundry, shopping, cooking etc. If family/friends/neighbors/church folks do not know then they cannot help now can they? Sit down with your husband and make out a plan.

Now I am not familiar with such severe headaches with MS. IT may be MS and it may not be. It could be an allergic reaction, neurological, migraines etc etc.

Know that they know much more about MS than they did decades ago. So even though you are going through this acute phase of symptoms/headache it will not always be like this.. you will get better. Hopefully soon my dear!

Let us know how you are doing. Hopefully you will get answers and really soon return to a better self!

Hugs my dear, this too shall pass..

Jan

[cjohnstone]

Thank you for your encouraging words!! I think I will have a "plan B" in place for when things like this happen. I feel bad feeling bad for myself....but its hard not to.

[hunterd]

Oh how being a mother makes this doubly hard.. so sorry for all your pain. Try REALLY hard not to feel guilty as it serves NO PURPOSE right now and uses up much needed energy okay hon?

This is when you need a plan B to ask for help. Dishes, laundry, shopping, cooking etc. If family/friends/neighbors/church folks do not know then they cannot help now can they? Sit down with your husband and make out a plan.

Now I am not familiar with such severe headaches with MS. IT may be MS and it may not be. It could be an allergic reaction, neurological, migraines etc etc.

Know that they know much more about MS than they did decades ago. So even though you are going through this acute phase of symptoms/headache it will not always be like this.. you will get better. Hopefully soon my dear!

Let us know how you are doing. Hopefully you will get answers and really soon return to a better self!

Hugs my dear, this too shall pass..

Jan

I could never in 1 million years have expressed it better myself

[cjohnstone]

Well last night I ended up in the ER. I called my neuros on call service and they suggested I go in to the ER and possibly get an MRI and maybe be admitted for IV steroids (I've already been through two rounds of these since October 2012) I was a little nervous but hopeful to get some relief for this terrible headache I have had for 6 days now.

The ER docs were pissing me off so much. I was telling them my medical history, all the meds I am on and that the dr on the phone told me to come in. They basically acted like I was crazy and were going to send me home with some pain meds. I had to keep fighting for them to look further, I was told to come to the ER for my headache and pain and I have a copay of $150.00 for ER visits. And I was not going to pay that for a prescription and them treating me like I was wasting their time.

Finally a different dr came in and called my neuro's office. They sent a neurologist from the hospital down to see me.......but he didn't seem confident as a doctor, very timid and he seemed like he wasn't sure what to do. So in the end they gave me a anti-inflammatory shot and sent me home with a prescription for naproxen and a Norco pill. They told me to call my neurologist on Monday.

The Norco only made me feel dizzy and tired so I just went to bed. STILL have the bad headache!! The ER doc said he thinks its just a bad headache. I'm not a dr but how could it be just a "bad headache" when it has lasted for 6 days and absolutely NO kind of medicine is even touching the pain!?

Such a WASTE OF TIME!!! Sorry.....I just had to vent....UGH!!!!

[mjan]

OH dear how horrible!! That alone would cause a headache!! BUT it was the responsibility of that on call neuro to set up your admission with this hospital via ER dept. Hopefully he is also affiliated with this hospital, or that consulting neuro would have to follow you and they cannot treat MS. Dang him!!!

I also can identify with the copay for ER visits..but as you know, they would not charge that copay if you were admitted!!!! Double DAng!!

Sorry hon. How's your headache today? And did you call that neuro and let him know yet?

Breathe... breathe.. (this is for me, as i am hopping mad) LOL

Hugs, Jan

[cjohnstone]

Need to Vent

Well after I was in the ER I was able to get into see my neuro, they ordered a stat MRI and ordered another round of IV steroids for my pain and headache. The MRI came back with no significant changes. So I was very happy about that.

Here is the venting part.....

I have worked the entire time since all of this started back in October. Even with IV's in my arm and numb from the chest down. This last episode really wiped me out physically and emotionally. With my job the end of the month is super busy and very difficult to take off of work plus I am the only one that does what I do. It is just a lot easier to schedule time off.

So after the end of the month I had asked my boss if I could take some time off to rest and recover from all of this. My boss was completely understanding and approved my time off but they needed a drs excuse for more than 2 days. I was taking 4 days to make a really long weekend. Today was my last day off and the dr called and was giving me such a hard time and an attitude about writing an excuse for a week after my IV steroids.

She said she didn't understand why I needed an excuse to be off of work after the fact. I explained everything to her and she was sooooo RUDE about it. I told her if she didn't feel comfortable doing it then I will just figure it out with work, I called for an excuse a week before I was to be off and they wait until the day before I have to go back to give me a hard time about it.

This may sound like me being a brat but I'm sorry I freaking deserve a BREAK!!! I am so sick of having to keep doing things like everything is okay when its not. I feel like crap.....ALWAYS now. UGH.....I just want to scream

Has anyone else experienced this?