what the dr said UFB
AnonymousApril 2, 2008 at 7:57 am
Ok, so I went to neuro yesterday after 6 mos of not being there. He did the basic exam and said I am no worse strength wise but there is increased atrophy in my feet and hands. I asked how to get that back. He said nerves have to re-grow…I may never get it back.
He said he wasnt going to hard sell me on IVIG. I asked about doing an EMG and he said no need to test what we already know. He said he doesnt know if the damage is old damage or just very very slow progression. Would the emg tell us ?
I asked if I’d get worse and he said he didnt know. Said he would typically expect another attack…could be 2 weeks, 2 months, 2 years….but until then, come back in three months. No treatment.
I am ok with no treatment…if that’s the right thing to do. He feels I am not alot worse…I feel the right foot is noticeabley worse in that the big toe no longer moves at all. He said that could be old damage.
I really put alot into the is dr. I feel today, it’s time for a 2nd opinion. I wanna know for sure what’s happening. The last thing I need is MORE bad things to happen.
I hope he’s right with this no treatment stuff. He said I could do the IVIG but wouldnt press it. He doesnt feel it works for me.
I just dont want more progressive un fixable damage. What’s a girl to do ?
AnonymousApril 2, 2008 at 9:11 am
I feel so strongly about this type of situation. I’m going to try to take it easy with my reply…but I can’t make any promises 😉 . I just want to knock some dr’s on their heads to see if they still have a brain.
CIDP is a chronic illness that if left untreated will cause progressive & irreversible damage. Any time you have more weakness, more paralysis, more ANYTHING but good feelings, it is NOT good! Why can’t dr’s grasp this logic?
To leave someone with no treatment plan with a chronic, progressive, potentially life threatening illness is beyond me. Seriously.
(told you I had strong feelings!)
You need a new dr. Plain & simple.
If your toe isn’t moving & it was before, then you are in an active stage of demyelination. If you are having demyelination then you aren’t going to recover & you are going to get worse, to the point where you can’t get better. You need to control the antibodies with medication before you can start to heal.
There are other medications besides IVIG. Is this dr not aware of them? I think everyone here knows that I am a very strong proponent of IVIG but if it doesn’t work for you then the dr should move on to something else. Plasmapheresis, ‘roids, Cellcept, Methotrexate…something!
This is very basic medical school knowledge. You don’t leave a patient, in an active disease, with no treatment plan. Period. End of story!
Sometimes I think that dr’s do this type of thing because they don’t know what to do. Instead of saying “I’m really not familiar with this disease or with the treatments available & I think we should find you another dr who is” or saying “I don’t know what else to do. Let’s find someone who does” they say things like “No treatment, no new tests, come back in 6 months”. It’s like they want you to get flustered & to leave them. I just don’t get it. Why do they have to be so stupid about it?
I just get SO angry with dr’s that do this to their patients. GRRR!
You are here & you know what other people have gone through. You know what is right & what is wrong. Your gut is telling you to get a 2nd opinion. Go get it!
WHEW! I wasn’t too bad was I?
Kelly (thinks your dr needs a good talking to!)
April 2, 2008 at 11:20 am
I am so proud of you going to the doc. You are starting to take care of you now, that is great, because Connor needs his mom. Don’t let this doc discourage you or falseley lead you to believe things ar A OK! If your toe has no feeling now, that is not old, it is new! I agree with everything Kelly said, another opinion, treatment, something needs to be done. (glad she said it LOL!)
Could you possibly give ivig another try before you entireley give up on it? If I remember correctly, you missed one day of the full loading dose and your maint. dose that followed a month later was only a quarter of what it should have been. I know reactions are a factor, but there are options. Find out the brand from the first time, switch from that brand, pre med w/the basics but add solumedrol as a pre-med, not a treatment, make sure the flo is slow. What about subcutaneous? Some have mentioned it more thana couple of times as of late. Maybe you could have this hottie doc look into it. Maybe you could inquire on the site and those who use it could guide you. Then there are the obvious other protocols as Kelly mentioned.
Is it possible to take a summer trip to Mayo? What does your husband think about all of this?
Good luck in your decisions and stay strong!!!!
AnonymousApril 2, 2008 at 8:20 pm
Make an appointment now, and you mite get in by October, before the real blizzards? I think that’s how it works…Actually tho, I think if it were me, I’d plan on Cleveland or Hopkins, as of late, Mayo doesn’t seem to be too keen on prescribing IVIG or alternatives [such as plasmapheresis] – they’re doing mostly steroids for some reason.
I would also bet that you could get into Cleveland or Hopkins much sooner too. Not getting worse is not necessarily good? I far better like the idea of getting better…it can and does happen. Maybe in little steps, but that’s a lot better than all the steps we took to get here.
Dawn and Kelly are on target with their opinions and Connor DOES need you!
AnonymousApril 5, 2008 at 9:46 am
thanks for the advice ladies. I am trying to get in to a dr at the medical center here. The nebraska med center. I realize that I cant just sit back and wait.
Kelly I am glad you are on MY side. 🙂
The IVIG did give me a rash each time but once. It was a bit itchy and more ugly than anything. I never kept track of how much IVIG I was getting each time…I do know I got gammagaurd all times but the first.
My first experience with IVIG was awful. I went to Methodist hosp here, having no clue what IVIG really even was. I only knew I was to go every day for five days. The first thing the nurse said to me is “I am only going to allow you five days once”. She said that several times and I didnt know what she meant. She continued to tell me also several times how hard to come by getting IVIG is and how expensive. She told me this each day I went for the infusion. By the fourth day I had the menigitis headache so bad that I just wanted to die.
I went to a different hosp for my infusions after that. The first time I was done in less than 2 and 1/2 hours….with nurse RAtchett. At this new hospital I was always there at LEAST 4. The first hospital was putting it into me way too fast.
Being naive and clueless, I didnt know that it was wrong to do that.
I would give the IVIG another try. There was no proof that I got better but I didnt seem to get worse.
I dunno. So much going on.
thanks for letting me rattle on…
have a great weekend everyone !
April 5, 2008 at 4:22 pm
Since you are willing to give it another try, start fresh. Maybe you could try Gammunex. Some who have reactions to gammaguard try gammunex. The meningitis headache you refer to is what Kevin gets, and his infusion rate max is 39. He has 25g over 6 hours and 40 minutes, over 4 days. Two things to consider, first as mentioned, try the gamunex at a slow rate, or try gammaguard again but insist on a slow rate.
Gamunex is apparently hard to get, and more expensive, however, you can call them up and get in this special program that will guarantee you first for ivig. They take a certain amount of applicants each year and all of those applicants ivig is put asside before they start to sell to others. You would not want to get stuck without and have to keep switching back and forth between brands.
Something else I thought of, I think you were on prednisone before, I have read SEVERAL abstracts that indicate some feel more weakness from the prednisone and then do not see the benefits from the ivig. If you are off all steroids now, you would get a true measure of the benefits, or lack there of from ivig.
I know you know about the pre-meds, but you could also consider solumedrol as a premed too. if we cannot get this under control this time to a bearable point, I am going to have to cave and give Kevin the solumedrol. Everyone assures me it is such a little amount, there are no worries. They don’t know what a psycho mom I am!!!
Lastly, if in fact you see that the ivig works, you could eventually even wear a fanny pack pump at home and be mobile while you get your infusion!!!
AnonymousApril 5, 2008 at 11:16 pm
When I crawled into my initial neurology appointment I musta gotten SOOO lucky at long last. The neuro was sharp, investigative, open and interested in finding out what was going on with ME.
I started IVIG in a small clinic to see if it would help-trying for 3 days biweekly over 3 month period.I thought I was dying from the side-effects but it started working. This May will be 3 years of IVIG biweekly and I can walk again.
Keep a written journal of each infusion-listing the day, pump rate, length of infusion, drug brand/bag number (I even took off the bag sticker and put it in journal), and how you felt during/after. I just filled up my 2nd journal.
I had to refer myself to a neuro like I did to a cardiologist, a surgeon and other specialists. Being a doctor’s daughter I can say they have changed so over the years. I think they have forgotten how to listen.My own dad said as much the last 5 years.
AnonymousApril 8, 2008 at 1:46 pm
It seems like the CIDP acts differently for each of us. It would be easy if it was the flu or a cold. Fairly reliable symptoms and recovery times, etc….
CIDP is not reliable, or the same.
You know your own body. You know how it affects you. Your Dr. needs to treat you both physically and mentally. Unless there is no progression of symptoms, and has been no progression of symptoms, you should be on at least some form of immunosuppression therapy, long term. That would hopefully keep a lid on the situation. With nothing, the cIDP is free to do what it wants to. Not a good situation. Some choices here would be immunan, cell-cept, etc. These can be taken long term (years). There are side effects to the body, but it suppresses the immune system, and therefore keeps the CIDP knocked back.
Another realistic treatment is plasmapheresis. Some folks have really great luck with that one.
You are still early in the boxing match with CIDP. Keep on punching, and keep a neuro in your corner. There are good things you can do.
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