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Back from the nueroloogist
      #299815 - 02/14/07 01:04 PM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

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.

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Taking it one day at a time.....

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Oh dear new
      #299820 - 02/14/07 02:07 PM
atomic rose

Reged: 06/01/04
Posts: 7013
Loc: Maine (IBS-A stable since July '05!)

I'm not sure I even know what to say that could possibly make you feel better right about now... but I think of you always, even when I don't come out and say so. *huge hugs*, Michele - that plain ol' sucks.

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Re: Back from the nueroloogist new
      #299823 - 02/14/07 02:44 PM
Ulrika

Reged: 08/20/06
Posts: 581
Loc: Uppsala, Sweden

Oh Michele... I'm so sorry. I hope it won't be as bad as she made it sound. I hope it never gets any worse.

Big hugs for you sweetie,

Ulrika, IBS-D

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Re: Back from the nueroloogist new
      #299841 - 02/14/07 05:03 PM
hohoyumyum

Reged: 05/28/03
Posts: 2263
Loc: SacTown, CA

Well, that just sucks. I keep you in my prayers and I think about you quite often to wish you well. For what it's worth, I think that you inspire a lot of people to push forward when things are hard.

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***********************
If you're not dead, you've still got time.



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Re: Back from the nueroloogist new
      #299846 - 02/14/07 05:20 PM
ChristineM

Reged: 05/31/04
Posts: 1662
Loc: soCal

Hey, Michele--

Sorry the news wasn't so good. Hopefully the picture changes as she gets more information and/or you enter a remission. You've got to be due for a remission sometime soon!

Keep us posted on how you're doing. (((((Hugs)))))

--------------------
Christine

Those who can do; those who want it done better teach.

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Re: Back from the nueroloogist new
      #299854 - 02/14/07 06:45 PM
Toady

Reged: 04/06/06
Posts: 1299
Loc: A small city, Northwestern Ontario, Canada

Oh Michele, my heart just sank. I was so hoping for some uplifting news for you. I'm really very sorry. I'm happy you are getting answers, but the neuropathy really sounds terrible.

And the lab tech should be shot!! And forced to go through what you do - maybe she would change her manner!

HUGS!!!!!

--------------------
Cassandra

Live like there's no tomorrow. Love like you've never loved before.

IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!

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Re: Back from the nueroloogist new
      #299862 - 02/14/07 08:40 PM
lalala

Reged: 02/14/05
Posts: 2634


Oh my goodness! Michele, I'm so sorry you have to deal with this, although it's probably somewhat of a relief to know that you're finally getting some real answers. So right now are your doctors trying to figure out what's causing peripheral neuropathy so they can find the best way to treat it? Do you think it's part of the RA? Sorry to ask so many questions. I'm sure your head's just spinning right now with all this new information.

Big hugs!

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Re: Back from the nueroloogist new
      #299869 - 02/15/07 04:23 AM
Mary_V

Reged: 05/09/06
Posts: 544
Loc: Grandville, MI

Sorry to hear the bad report, Michele. You are in my prayers. Hopefully when all of the tests are done and all of the reports are in the doctors will have a better understanding of how to treat you. Stay strong.

--------------------
~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.



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Re: Now, back from the rheumys new
      #299880 - 02/15/07 09:23 AM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

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.

I get to the rheumys office, red eyes, no make-up, hobbling and looking like crap. I had to sit in the waiting rooms uncomfortable chairs with two babies and a very cute toddler. I was trying to hide the fact that I was crying as seeing babies when I am already upset is hard. Get into the room and the nurse is going ON and ON about all the babies in the office today and how hers are all grown and ON and ON about cute babies. She than noticed I was crying and asked what was the matter, I just said I have had 5 miscarriages and now I am sick and miserable! She left the room rather quickly after that.

The rheumy comes in and we get to talking. She told me that she saw my name on the schedule and did a lot of reading on neuropathy, RSD and that sort of thing. She said that I am a mystery to her but that she is testing for everything and really trying to help. She said she has sent me to just about every kind of specialist out there.

She feels that I do have sero negative ra but feels the swelling I have is not consistent with ra. She said she thinks that my joints hurt from the arthritis and because I have neuro issue on top of that, that things just won't settle down, despite the drugs.

I had a complete meltdown and told her that I believed she was doing her best but that I am still in too much pain and just can not take anymore. I was sobbing to her that she has to do something.

She put me on Cymbalta on top of the neuro drugs. She didn't feel that regular physical therapy would be that much of a benefit to be considering I have to pay 20%. She is sending me to a pain specialist who does the spinal blocks but I can't get in until March 22!

She also is re-running all my labs, basically checking for everything known to man. I think all but about 4 boxes are checked on that big lab slip! She was very nice and said she is doing everything she can to help. She said if the pain specialist and neurologist can't get anywhere with me, she would try to get an MRI approved for me. She said an MRI of my hands and feet probably would not show the cause of my pain since it is so generalized but that it would just show the extent of damage and apparently it is hard to get my insurance to approve the mri's.

My crp was up to 1.8, it has been running .2. However, she wasn't overly concerned about it but is retesting it. She was fine with me stopping the mtx as she believes the majority of my pain is not from ra and the humira should stop any progression of bone damage. I am to stay at 5mg of the steroids though.

I am not sure how I feel about my appt today. I do honestly feel she is doing everything she or anyone else can at the moment. I just wish I didn't have to wait so long to see the pain specialist.


--------------------
Taking it one day at a time.....

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Re: Maria new
      #299882 - 02/15/07 09:26 AM
michele

Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan

People with ai issues are more prone to neuropathies of any sort. I also had the RSD (reflex sympathetic dystrophy) a couple of years ago, which is a rare autonomic neuropathy so that makes me that much more prone to other types of nueorpathy.

Diabetes and thyroid problems are the main reasons for neuropathy and I have neither. Apparently, a lot of the time they never really find the cause, just like ai issues.

See my update back from the rheumys office for more info...

--------------------
Taking it one day at a time.....

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