Well, I just got back from the neurologist office and the preliminary report shows peripheral neuropathy. The full report wasn't in yet even though it has been two weeks.
She said the neuropathy is not what is causing the swelling though, so I still don't know why my hands and feet look like the Pillsbury dough boys.
The lycria is helping slightly but its so expansive so she is giving me the generic for neurotin. I will be taking both for a few weeks.
She had me go over to the lab for a blood test to check for the markers in my blood. The phlebotomist was a complete wench. I was super sweet and explained that my veins are shot and that see would need to please use the butterfly needle and showed her which veins still work. She completely ignored me and jabbed the big needle into my main vein and there was an audible POP and blood started squirting all over and it HURT like nothing before. I was so angry. She had to rooter root around for a bit to even get any blood out. I can't even bend my arm now, there is a HUGE knot and its all black and blue!!
So, my afternoon is not going so well. I really wasn't expecting this dx as at my last visit she was pretty sure I didn't have neuropathy but my emg and needle test showed otherwise.
She told me that physical therapy would not help, that it was probably going to be progressive and that they can try to treat the symptoms but it will probably never go away. She said over the years, the pain is probably going to spread from my hands and feet towards my trunk.
She said if my blood shows the particular markers she is looking for, that they can put me on some other type of immune suppressant drug, different than the ones they use for ra. I was too shell shocked to get the details. However, she said if I want to try to get pregnant, do it sooner rather than later because the pain is going to get worse and she wouldn't start these other immune suppressant drugs until after I had a baby.
I have reports to take with me to the rheumy tomorrow morning. I sure hope the rheumy has some better news.
Oh Michele...sorry you've had a rough day.
I've been really following what's been going on with you since I've been having similar problems (not the swelling though)
I hope you get some good news tomorrow
Ok guys; can you guys please catch me up? I'm sure I've read some of what's happening, but I get everyone confused sometimes and don't remember a good bit of what I read.
What symptoms sent you to the neurologist? What test did they have to do to dx'ed this?
Hi Michele, I'm so sorry to hear you have a diagnosis of neuropathy. The pain can get pretty bad, but they hopefully they will be able to control it. They are learning more and more about these disorders.
I, too, have neuropathy. It was diagnosed by my neurologist, who is also my pain management specialist. I originally went to her for the severe pain issues I have from OA, RA, Fibromyalgia and degenerative spine. She is a wonderful doctor and in the course of getting to the bottom of my problems, so she could treat them most effectively, she discovered the neuropathy. We have tried several things. If the first doesn't work, they can try something else. But I agree with your doctor and would say have your baby before you start any meds. and before the pain gets any worse.
I really think you should report the phlebotomist who drew your blood,to the head of the lab you went to. That was completely uncalled for. They are so much more effective if they listen to the patients. It helps them and the patient, too. When I tell the plebotomist my own weird little issues, they have always thanked me and tried exactly where I asked them to. We know our bodies better than anyone. I know they are the specialist, but we have to live in here...in these bodies.
Best of Luck..Gentle Hugs and Many Blessings,
Nini
Micheleb, what a rotten experience with the phlebotomist to go along with the shock of your diagnosis. I don't blame you for being aggravated, shocked and concerned. Hopefully your progression will be very, very slow. You sure do need to know what's causing all that sweling though. Medical mysteries are only fascinating when they belong to someone else, right?
Micheleb I am so sorry about the Dx. I too have PN and did get help from taking Lyrica so the generic Neurontin should help you there.
OMG I cannot believe that phlebotomist! I also need the butterfly needle and only one vein is accessible. I would definately call in a complaint since had she just listened to you that would not have happened. We know our bodies more than anyone.
I hope the rheumy appt. goes well.
Michele, terribly sad about the news. However, I don't understand how they could say that it cannot be treated better. I have the same diagnosis and that is not what I am being told and not what I have read about it either. Neurontin can really help with the pain although I can't take it myself. Darn, it was a great pain reliever. I'm on Bacoflen now and the Pain Specialist is adding Methodone and Lyrica and possibly, if necessary, Cymbalta. At the same time, I am doing PT exactly for this problem and it is giving me a tremendous amount of relief.
What they don't tell you is that nerves actually can heal. If they can get the nerves calmed down and retrain your muscles, there is a possibility of the nerves healing themselves even though it can take months. That seems an awfully grim prognosis and I think you need to ask more questions. It's pretty doom and gloom. Of course they haven't done the nerve conduction tests and maybe that would make a difference.
I agree with filing a complaint against her for taking your blood in that manner and also report that it looks bad now. That was cruel and unprofessional.
I would try and have another baby first though because of the meds. It will be very interesting what your Rheumy says. Please let us know. You are in my thoughts, girl. You have been through so much. If the news is as bad for you, it is the same for me. But my doctors have not made it sound so grim and they are offering me lots of tools to deal with it. Push for the PT. My tremors have decreased a lot from that and the Bacoflen. And research the hell out of the this. Since this is probably caused by RA, then your Rheumy should be trying to bring that under control which will also help any progression that might occur.
I hate the day you had, just hate it. You deserve better treatment than this all the way around.
Thank you girls. I just got back from the rheumys office. I have been having a pretty crappy week and woke up to my uvieitis again so back on the steroid eye drops.Micheleb. My heart goes out to you.
That whole scene with the babies and the running on about babies was just way too much considering what you're going through. I wish the nurse had at least apologized. Maybe she was too embarrassed at her inadvertent foot in mouth and didn't know what to say.
I dealt with the pain of infertility for many years (pre-RA). I'm older now, and with the twists and turns my life has taken I honestly say today that I'm glad, all things considered, that I don't have kids. There is an occasional lingering sadness as with all major losses, but I have peace, I don't have regrets, I can be cheeful (not even falsely cheery) around mothers and babies and even enjoy them a great deal and not have it trigger any trouble inside me. At one time I thought that wouldn't ever be possible.
I'm not suggesting at all that you should feel this way, now or maybe ever. You just can't tell someone how to feel, and when you're grieving about being childless, almost everything someone else says to you is the wrong thing, especially when they're trying to tell you how you're really better off the way you are.
I'm just feeling for you that familiar feeling of grief and aloneness and being inadvertently kicked around mercilessly by a world, especially the feminine one, that revolves around children and motherhood.
You're in a really painful place, and while it doesn't help you now maybe it helps a tiny bit to know that one way or another it will resolve for you, eventually, and you'll find a place of peace and ease about it, either with or without motherhood.
I guess that's like telling someone who just lost their spouse that one day they'll feel like living again and even have a good, rich life. It seems impossible to hear at the time and probably isn't even helpful to hear. So I guess I should just say I'm sorry for the place you're in right now, and imagining how hard it must be to have RA, neuropathy, and a stupid mystery illness all going on at the same time with your tender agonies about wanting a child.
I'm glad your doctor is compassionate, persistent, and hopefully, resourceful. That counts for a lot, and gives me hope, as an outsider, that you will get to the bottom of this.
How amazing to have nearly a whole lab sheet of tests to take and re-take. Not only do your nerves and emotions feel like pins and needles, you literally are a pincushion these days!
Hang in there. That's all you can do, isnt' it?
Thank you so much rkgirl. Your post made me cry but in a good way. I am sorry you too had to go through fertility stuff for lack of better words. I can only hope that one day, I will find the peace you speak of. I think I am beginning to understand that I may just have to accept the fact that I will not be a mother. I know I still morn the loss of my babies but add on top of that all this other crap and well, happiness is eluding me at the moment.Micheleb, sorry to hear about your horrible experience with the phlebotomist. She should be reported.
I am waiting for an appointment with a neurologist as I have numbness and pain (especially at night) in feet and hands. The pain is like when your feet are thawing out from having been frozen. Is this the kind of pain you are experiencing (or anyone with neuropathy)? My rheumy does not think it is RA related although whenever I've looked up neuropathy it does list it as a secondary condition of RA??
My thoughts and prayers are with you.
Michele, I just want to sit down and cry with you. It is just too much to take in. At least your doctor is trying and sometimes they do figure it out. Hold on to that.
As much compassion as I feel for you regarding your loss, I can never really understand it because I had kids. I just think that makes a huge gulf that cannot be bridged. But I do care and my heart breaks for you. All I can think of is my sister's own pain and how hard and long it took to overcome it. She has her adopted little girl now whose special needs require all that love she built up over the years. Now, she cannot even remember the horrible aching of before. It's gone.
It just means life does change and it is going to change for you too. I don't know how. I don't know how the healing comes and if I could, I'd certainly dish you out an extra helping.
I wonder if the swelling will go down after you go off the MTX. Strangely enough since they took me off the MTX all these skin lesions that I have had for years have all healed up and gone away. It's an odd thing, not related to any scientific explanation that I know about and maybe something will ease that swelling you have as well.
At least they are really looking now and not brushing you off any more. You cannot find an answer as long as they were denying there was a real problem.
You've made it a step closer to getting better by getting the one diagnosis. I still think the PT would really help you. The expense should not be the doctor's concern, only yours. It is the neurologist that pushed for it for me.
You are going to start feeling better if they can get you nerves to calm down. But I can tell you that the simple stretching exercises that they have me do help me a great deal.
Cindy, you symptoms sound like the typical "Socks and feet" that comes with peripherial neuropathy. My neurologist definitely thinks it is one of the three: RA, vasculitis or Sjogren's that is causing the neuropathy. I think this comes from what these different doctors experience in their own practices.
These specialists are often like the 6 blind men examining the same elephant. They all look at the details differently and come up with entirely conflicting conclusions. But one of these doctors is going to have the vision to see what is going wrong. Sometimes, it is the action of one, with the addition of another. They tweak and twitter about, but eventually the real culprits in getting you well are revealed.
But you have every right to feel devastated this week. It is devastating. Give yourself to cry, to melt down. Call whomever you need to get some moral support. You are allowed to feel run over by life because that is what happened.
Hugs, Michele, lot of long hugs and a box of kleenex.
Thank you Deanna. That's odd that your lesions got better when you went off the mtx. My selling started long before I started the mtx but we can always hope! Have you been checked for sclerderma (sp?)?Hang in there, Michele, that is a lot of switching around and some powerful meds. I think that they have at least got the point that you are in a great deal of pain.
Careful driving. They have told me to wait four days apart on each thing I'm changing so that they can see what the effects are and so that I can adjust to the meds. With all you have going, you should be a zombie.
You may need to have someone help you get home.