[erinhermes]

tHello all!

I am hoping someone can give me some advice.

I have been wakiing up with horrible charlie horses that go from the tips of my toes to my fingers. This pain is driving me CRAZY!

You can actually see my muscles shake when I am having one of my episodes...it is so strange!
I HAVE had these b/4, but the 1st time I was so anemic I needed a blood transfusion. After that they were few and far between but still scared the crap out of me.

I have blood work done all of the time and it is always within normal range, so I have no idea what is causing this; what I DO know is that I am at the end of my rope!

I am also using a walker now b/c I can't put any weight on my left leg. It just hurts too much. I was recently dx'ed with piriformis syndrome but feel like something else is going on.

I went to Walmart the other day - big mistake - and was in so much pain that I was glued to the floor asking for help - no one helped me! Even WITH the walker the pain is horrible!

I am on 3 different pain meds right now, but feel that I NEED a round of IV IG as the pain is just exhausting.

That last round of plasmapherisis just wiped me out! My left leg and foot is still swollen - though not as bad as b/4.

Has ANYONE else experienced this? It is REALLY messing with me!

I am thinking about getting a Hoveround or some other machine like that, but don't want to "give in" to MG.

Erin

P.S. There is some good to come out of this; my nail guy was so sweet and gave me a FREE face wax and nail polish b/c I told him I could no longer afford to have it done, and my girlfriend is coming out today to give me a new fresh "do" - some people have been so very kind!

[AnnieB3]

Erin, Both Alice and I on your last post thought you should have the possibility of a clot/DVT (deep vein thrombosis) checked out ASAP.

That swelling is not normal. They need to do an ultrasound of your leg. And probably a D-Dimer blood test.

If you have a DVT, it is an emergency.

You may have an occluded artery somewhere. Again, you need help from specialists. And perhaps a couple new "eyes" on your situation, as in a 2nd opinion.

Have they done a chem panel? It sounds like you have more than MG going on here.

I'm sorry no one helped you. People can be nice too!!!

Watch out with those nail jobs - it's easy to get an infection.

Please go in to the ER and have them check out the possibility of a clot. I hope you will get help.


Annie

[suev]

Ditto to what Annie said. I repeat the suggestion about a complete workup in Dallas (or anywhere new). Also, I wonder about drug induced vasculitis. There are others who know much more about it than me and will, hopefully, weigh in.

Erin, you had said a couple of days ago that you thought your MG was doing good - but it was the other stuff (reaction from pex and the left leg pain) that was putting you in a Job-esque scenario. The last time you had IVIG, they did the pex within a couple of weeks (cancelling out the IVIG) to help the pain. So I'm thinking that the IVIG isn't likely to help the pain now.

Erin, immunologically, your body has been through more in the last 12 months than 1,000 folks go through in a lifetime. They have thrown so many things at you - one on top of another - in an extremely short period of time - that your body may well have no sense of up, down, left or right.... so it's just freaking out!! And its way of telling you is Pain.

It has got to be difficult for anyone to determine what drug is effecting what body response in you. That's why I think it would be extremely beneficial to begin again with a new medical team who has no past bias about what has/hasn't worked.

One last thought...Are you still on Cyclosporine? Have you looked into that as a cause/contributor? If I remember the sequence, you didn't have pain until shortly after the Imuran was stopped and that drug was begun.

I am truly sorry for what you are (and have been) going through. It's not fair and you have to be fed-up and exhausted. To add insult to injury, the Holidays are coming. All we can do is offer support and our ideas - which doesn't seem like much when you need so much more help.

You will find the best way to get through this - because you are you. But please do give serious thought to a new game plan.

Sue

[alice md]

Erin,

it is extremely hard to give serious medical advice to someone on the internet, without being able to fully understand their symptoms or examine them properly, order relavent tests etc.

so I will just go with common sense.

none of your current symptoms sound MG related to me, so there are roughly three possibilites to explain them-

1. you have another unrelated medical problem

2. this is related to your treatment and meds.

3. those are "secondary" complications of your illness.

and possibly some combination.

1. it is unlikely (although possible) that you have another autoimmune process going on, with all the immunosupressive treatment you are recieving.

2. medication side effects (mostly if they are not very common) are many times a source of "unexplained" medical symptoms. cyclosporine (which I believe you said you are on) can cause bone pain, and possibly other meds. that you are taking can "mess" up with you.

3. like Annie said it is important to make sure that you don't have any vascular complications, and if those symptoms in your leg persist a repeat US doppler is probably in place.

it is also important to make sure that you have proper support for your spine, neck and arms, at the times that your muscles can't do a good job in supporting them. and also important to avoid certain tasks that are hazardous to you at this point.

using tools and aids that can help you function better, and not pushing yourself beyond your abilities, is not giving in, it is accepting the reality, and finding better ways to live with your illness.

hope at least some of this helps,

and don't feel guilty for concentrating on taking better care of yourself.

alice.

[ConnieS]

Hey Erin, I'm sorry to hear that you're not doing well, do follow their advice and get things checked out asap! I do hope u start feeling well soon and I'm sure that once they get things sorted out, you'll start feeling better.

*hugs*

p/s: my nurses in the hospital usually don't recommend getting nail jobs done as the nail polish itself isn't very healthy to use or to smell.

[Pat 110]

Hey Erin,

I am so sorry for all you have been going through. You seem to be going from bad to worse. I know you have the greatest respect for Dr. I, but would you please consider getting a second opinion? From what you have told us about Dr. I, he would totally understand. I hope and pray you get some answers soon. Take care and feel better.

Big Hugs,
Pat

[Juanitad]

I have bad foot or leg cramps at night if I have not hydrated properly during the day.

Are you drinking a lot of non-caffine fluids during the day?

Are you getting enough calcium? Low calcium can cause cramping also.

BTW - I agree with everyone else that you might need to be seen by another set of eyes. You doc is probably great, but sometimes we and our docs get to close to the problem and we start treating symptoms and side affects instead of taking a step back and looking at the big picture.

Good luck!

[Joanmarie63]

Erin,

I know I haven't been on for awhile but I saw this and HAD to reply. I too get serve leg pain and up the arm on my left side. I saw my Dr. just this week and he feels it is side effects of my meds, or bad disc in my neck. Since all of it started with my meds, I am saying side effects. Now your swelling.. not good.. need that checked ASAP. I have some swelling but not bad like you.

All my blood work comes back fine.

Please keep us updated.

Big Hugs

[allen L]

I hope you feel better soon. speak with your docs, get them going on working on something to relieve your pain, specially with the holidays coming around. I hope you have a warm and pain free season.

[AtlantaMG]

Erin, huge hugs hun for having so many issues lately. I hope you do see a dr soon about your legs like PP said.

I do have remedies for the charlie horses though because I used to get them something awful as a teen and started having them periodically since getting diagnosed. One week I had them every night. Those things can seriously hurt and leave you sore for days. I started back taking Vit E because it is supposed to help with that and did in the past. It seems to be working because it happens much less often. It is terrible when you are fast asleep and you move and bam your leg hurts so bad you want to bite down on your pillow to keep from crying out in pain. Also if you are especially in tune with your body and know when you are about to have one, or even in the very beginning of one, point your toes towards your head(stretching your achilles tendon and calf muscles). I read that online once and starting doing it and noticed that the next day wasn't nearly as painful on the ones I was able to "catch" and do that during.

Good luck and let us know what the dr says.