AnonymousSeptember 30, 2009 at 9:11 am
This is frustrating as “heck”.
Last week I actually fooled myself into believing that, maybe, this was all getting better. Actually felt better for about three days in a row! WHOO-HOO!! Not “my old self” better, but better. Then on Thursday, IT (whatever IT turns out to be…) started rearing it’s ugly head again. My arms are the primarily involved limbs, with my legs secondary, and Monday night I had to do a lot of work at home, on my laptop. Yesterday my arms felt like tree limbs, pretty much just hanging from my sides. Hands and forearms were burning, finger movement is very slow (almost like using them under-water), and they constantly feel like they’re just on the verge of cramping. Never quite cramp, but that nagging little “nerve irritation” feeling. Had to come home from work mid-day to take some meds and lay down.
Can’t get in to see any neuro’s for at least three weeks, and the one I have an appointment with…I’m not even sure he’s even heard of CIDP. I would hate to wait that long, see another doctor, and have another one tell me…”Hmmm…Gee….Just don’t know…guess I’ll send (read:pawn) you off to so and so”. Who will take another 1-3 months to get in to see.
Sorry, it’s just been a bad few days, and not knowing what’s going on is frustrating. Not only do I have to worry about my own health issues, but I have to keep in mind what my boss’ reaction is going to be. Even today, when I think I should be staying home and resting, I have to drag myself to work for fear of being let go if I don’t. In a “right-to-work” state, FMLA doesn’t mean squat, I’m learning.
On a hopeful note: I got a packet from GBS/CIDP, and found inside a listing of local support group chapters and their leaders. Sent a short note off to the leader for my state asking if she could recommend a good neuro that has treated this condition and would be able to tell me whether or not it’s what I’m suffering from. Hoping the list is up to date and she responds.
Thanks for “listening”….
AnonymousSeptember 30, 2009 at 10:55 am
My advice is to go to the hospital. You are in a flare or relapse…whatever you want to call it. If you can’t get in to see a good neuro soon then you might as well go to the hospital. They should have a neuro on staff who is capable of handling your situation.
I think if most people started feeling what you are feeling they would go to the ER. It’s definetly NOT normal & should be address quickly.
I’d go to a larger hospital though.
September 30, 2009 at 11:06 am
Elmily’s Mom had the best idea get to a hospital as soon as possible. I wouldn’t put this off while the damage is being done.
My only other idea would be to call the neuro every morning and see if they have a cancellation for the day because you need to get in quicker than 3 weeks.
Juggling work and doctors needs divine guidance, good luck or both, but health is everything.
I wish you the best.
AnonymousSeptember 30, 2009 at 11:45 am
I agree with the others. Get to a doctor sooner than later, it may save any long term damage.
I would call the neuro ‘s office and ask if they have dealt with CIDP or even know what it is. It would be a pain to be sitting waiting only to find they really can’t help you.
Try to find a neuro in your area that deals with CIDP, even if theat means getting out phone book and calling them!
take care, hope you get some answers soon
Rhonda from Canada
AnonymousSeptember 30, 2009 at 3:33 pm
Well, I took the ER advice…now I’m more frustrated than ever. Shortest ER visit of my life. They listened to me, acknowledged what I was saying, and said that there was nothing they could do for me, that I either have to find a doctor that can see me sooner, or just wait for my appt. Said that they can only get neuro’s to the ER for certain “extreme” symptoms, like stroke-symptoms.
But, they were very happy to accept my $100 co-pay.
So….I wait, I guess.
Ready to curl up in a corner and cry…
I have called several in town…seems there are only three that actively treat peripheral neuropathies…all are scheduling for January! Got a cancellation appt for 10/21. I’ll give him a call and try to get in sooner, but don’t have high hopes.
September 30, 2009 at 5:52 pm
Hang in there Elmo. I know it’s rough enough being sick without facing hurdles to get help.
My neuro sent my nerve and muscle biopsy for a second opinion to a Doctor Kevin M. Flanigan in Salt Lake City. That is how I got my CIDP diagnosed.
The report I have is from Arup Laboratories 1-800-242-2787. There is the University of Utah Health Sciences Center – Dept. of Pathology listed on the same report 1-800-348-2787. It’s a surgical pathology report.
I don’t know if Dr. Flanigan is in private practice or even if you live in Salt Lake, but maybe you could call those numbers and they could refer you to a specialist in your area.
Maybe the doctor you will see on Oct. 21 can help you. I hope so. You have certainly been trying. My prayers are with you.
AnonymousSeptember 30, 2009 at 8:45 pm
I would call teh university and see if they have any neuro’s who treat CIDP. They tend to spend more time with patients and know more about the disease because they do more research. Neuro;s in reg practices dont have time to resaerch specific diseases.
Good luck you will be in my prayers
Rhonda (RyaN’S MOM)
pS yOUR FAMILY DOCTOR CAN PROBABLY GET YOU into the neuro quicker. its amazing when my doc calls they always find a quicker appt than what they told me.
AnonymousSeptember 30, 2009 at 8:47 pm
Thanks, Katy…I really appreciate the info. Dr. Flanigan is at the U of U Neurology Department; sounds like he’s mostly a researcher/pathologist. That’s also where the original referral I had was to…to a Dr. Mark Bromberg, who’s supposed to be “THE guy” for neuropathies. Unfortunately, they don’t take my insurance, and I was told the initial visit alone would be $1500 out of pocket. I did talk to them about any studies that they might have that I’d qualify for, but they don’t have any going on at the moment. They said maybe in 6-9 months. Did refer me to someone in town that they have done training for/with, and also kind of gave me the impression that I should see her rather than the guy I have an appt with for later this month. When I called her office, though, she’s scheduling for January. I’ll talk to them about emergency or cancellation appointments, probably still go to the appt I have on the 21st, and try and hang on.
It’s amazing to me how serious an issue this seems, yet all the medical professionals I’ve come across so far are completely ignorant of them. Seems everyone hears “nerve pain” and thinks of diabetics and shingles patients.
Keeping the logs that were suggested, although typing is something that my nerves don’t tolerate very well at the moment. I’ve also had to curtail my keyboard playing…play every week for church, but it really throws my arms for a loop. Hope we can get this all under control…playing the piano has been my greatest stress reliever throughout my life…started when I was 6. Some others and I have a little group that plays at a lot of retirement homes, etc. The thought that I’d have to stop someday isn’t a “happy thought”.
Thanks to everyone for allowing me to “vent”.
AnonymousOctober 1, 2009 at 11:53 am
Thanks for the advice; I’d actually thought about that and will probably pursue it. Figure that specialists will probably tend to believe other doctors more quickly if they say it’s an emergency. Might tend to dismiss patients as uneducated or overly dramatic, you know?
My wife and I were talking last night, and I decided to start taking the Neurontin I have at home. A couple of docs…my pain doc and my GP, suggested that I wait. Didn’t want me to “mask” any symptoms prior to seeing a neuro, but I’m at the point where I think if it helps me function until I can get in, then so be it.
I’d be very interested in the opinions of those who’ve been through this all before. You think I could be miss-serving my diagnosis goals by starting this med?
AnonymousOctober 1, 2009 at 11:40 pm
My advice, take the neurontin… it might take a few weeks to kick in, but the pain relief is well worth it. It will not mask anything, at least from a dx standpoint. I am 7 1/2 years out, & could not last half a day without it; it is the ONLY pain med I take. I was left with very damaged feet, actually lots of neuropathy below the knees, & also some residual hand damage. I remeber the first two years wanting someone, anyone to cut my feet off (wasn’t walking anyways), the pain was that bad. And that was ON the neurontin.
I always got in to a neuro via the ER, but then I was totally unable to walk, couldn’t raise my arms up at all, & had no use of or strength in my hands. I guess it does depend on the severity of one’s symptoms.
AnonymousOctober 2, 2009 at 9:49 am
[QUOTE=Pam H]My advice, take the neurontin… it might take a few weeks to kick in, but the pain relief is well worth it. It will not mask anything, at least from a dx standpoint. I am 7 1/2 years out, & could not last half a day without it; it is the ONLY pain med I take. I was left with very damaged feet, actually lots of neuropathy below the knees, & also some residual hand damage. I remeber the first two years wanting someone, anyone to cut my feet off (wasn’t walking anyways), the pain was that bad. And that was ON the neurontin. [/QUOTE]
[FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]Pam, I’m in much the same situation as you describe. I was diagnosed, initially incorrectly, 2 years ago and correctly a year ago.
My question to you is … what dosage do you take of the neurontin? I’m only taking 900 mg/day. Perhaps the dose should be higher as my feet/shins/thighs/hands are no worse, but neither are they any better.
A problem, however, is that one of the neurontin side effects is a problem for me … for which my neuro has suggested Imodium along with the next dose of neurontin. Yes, you guessed it … Montezuma’s Revenge neurontin style. But if a higher dose of neurontin would alleviate the symptoms, I could always up-the-ante on the Imodium as well.
This disease is ridiculous! I’m writing this and I’m chuckling to myself about how darn ridiculous it is! 😀 [/COLOR][/SIZE][/FONT]
AnonymousOctober 2, 2009 at 6:46 pm
Ditto the comment from Pam. Neurontin has about a six or seven (maybe) hour cycle. It is supposed to dull the neuropathic pain. It will not change your neuropathy, just help treat pain symptoms.
There are hundreds of things that cause peripheral neuropathy. Be prepared for tons of tests and a lengthy time before diagnosis. It is frustrating.
But on the bright side, we are here for support. And maybe some knowledge from time to time.
AnonymousOctober 9, 2009 at 4:04 pm
[FONT=”Comic Sans MS”][SIZE=”2″][COLOR=”Sienna”]Okay, so the neurontin won’t do much for symptoms, just for pain. That’s understood.
Now I need some advice.
I have had pins/needles in feet and cattle prod electric shocks in hands … those have alleviated with the neurontin.
EMGs, etc. showed loss of sensation in shins. That’s remained about the same for a year or more.
Now I notice some loss of sensation in fronts of thighs. The fronts of thighs is where I’ve had, from the beginning, the “exercise burn” sensation.
Is there such a thing as CIDP progressive arthritic type pain in hands?
Anyone with similar experience?[/COLOR][/SIZE][/FONT]
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