My 4 year anniversary
AnonymousJune 18, 2009 at 1:20 am
This month makes 4 years after being correctly diagnosed by accident and lots of IVIG. I have thought of what I’d write for this and gotta admit it was hard. I am truly grateful for the wonderful neuro I saw thinking he’d have some ideas on making my Fibromyalgia better. I’d taken all my records/MRI’s to him for a simple consult. Much to my surprise he said I didn’t have Fibro and whatever I had was very serious. He then said he thought it may be too late to help as it was so advanced. I just looked at him…???
I am concerned at the lack of physicians caring to help a patient who’s in obvious physical decline. When I was curled up in a ball due to the painful CIDP progression there was no way I could doctor hop. I did my best to go to ones I thought may help. What a sorry lot they were. Pain sure scares them. Pain is a major factor of something wrong. I did finally get most of my medical records and there was this reoccurring paragraph saying I had no leg reflexes. Why didn’t they explore that farther? It took 6 years to be diagnosed. I can just shake my head about it.
Yes, CIDP is a rare disease but no one wondered why I was on 2 forearm crutches and dragging both feet?? My right hand half the time wouldn’t work.
I’m doing so much better. When I walk unaided by my flower garden I smile. It does take work but the vivid blooms are such a delight to see. I’m glad that there is medicine to help me. I’m grateful for the few good doctors I have found.There are days I can’t even get dressed but I know in my heart tomorrow will be better.My silly cat keeps me company when I’m on the sofa.
I thank you all on this Forum for your support, kind words and information.
My birthday wish is better ways to help us with CIDP. Maybe a yearly shot of IVIG costing $ 1.98.
AnonymousJune 22, 2009 at 3:36 pm
I am here in NC as well. I don’t know if it is hubris or arrogance, or that they just think we are all so much less intelligent than they are, but many Dr.s here have little respect for the patient. Not all, thank God. When you find a good one, you need to stay with him/her, but I have had several that sound like yours. (I wonder……)
Anyway, I am so glad that you have made some progress. I remember how hard things were for you.
I like the $1.98 idea for IVIG. And just one shot a year !!
AnonymousJune 23, 2009 at 2:33 am
Hmm! Seems like the 3 of us in NC have all had to deal with the same crap! I agree completely about these doctors here in my State! When I lived in PA I had good professional help and my doctors listened to me back then. But getting diagnosed with Lupus is also hard for some patients because of how this disease works. It sneaks up on you and comes and goes in flares!
Never in my wildest dreams did I think I would get CIDP with it also. But my CIDP was caused by Lupus. Right now I am using a wheel chair and crutches. Can’t use my walker right now because both of my hands are now all screwed up!
It was bad enough not having my legs but then loosing both legs and arms makes it a hard struggle. I am like Dick S! I don’t know what the problem is with these doctors here in NC but I have had myself a time with them. They all have a non caring attitude and half of the ones I have seen were totally worthless! Didn’t do anything for me until I finally found one that listened and that was my regular doctor. Went through 3 of them before I found one that listened!
Even my hospital in my area stinks! I won’t even go to my hometown hospital. I go to the next town or 2 hours away! LOL! In fact! Half my town goes to the other town too! I hate to say it but in my area we have a bunch of quacks working in the medical field!
I’m glad though that you are starting to get somewhat better. This stuff takes a persons life and really is frustrating. You got to be strong in the mind having this stuff! If not! It will take you down!
I enjoy looking at my flowers. This year too we have had alot of good rains and all my flowers have been beautiful. And the trees are looking so green!
They tried to stick that Fibro diagnoses on me also! But I told them that it was not Fibro and insisted they test me and keep testing me until we figured out what it was. I know what nerve damage is. Had it 16 years. It would come and go. Saw remission 2 years!
When I moved back here to NC and started meeting these doctors. I wanted to cry! I have never in my life seen so many rude and ignorant doctors! I saw an ER in my town change overnight with a different type of staff and that place turned into a joke.
Took me 7 years to finally be placed on IVIG’s! Not to mention the 7 years of life I lost because of the ignorance! Thank God I finally have some good doctor’s. I don’t plan on letting them go either! LOL! Hugs
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