angry and confused
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December 7, 2007 at 9:16 am
I cannot seem to get any doctor to do much of anything up here. I haven’t posted since I was in the hospital because I have not been feeling well at all. After 13 lousy days in the hospital they finally released me, well basically because I told my regular doc that he release me or I leave on my own. I specifically went in for IVIG because the neuro told my husband and I that was what he was going to do. I recieved one bag of IVIG and then next day he wanted another MRI and a spinal tap. He threw a temper tantrum when my body jumped from him putting pressure on a sore area when trying to do the spinal in my room when the last time I needed one they needed to put me in OR for it to be done. He then walked out and neither my regular doc nor myself or husband hear from him again. My regular doc is not comfortable with continuing the IVIG but he did order the spinal to be done in OR but unfortunately the docs did not even get into the spinal cavity. When I had this done in Jan. 2001 I did not have the elevated levels in my spinal fluid so more than likely it would probably not be again and since it is not a difinitive test it was worthless and also caused severe back pain for which I needed IV pain meds for the next 10 days to be able to get into my wheelchair. I now have another neuro appointment on the 19th but I am not hopeful at all. My regular doc has told me that we may have to go to Minnesota (NOT MAYO!)
but we cannot afford to do that anytime soon. I should hear about disability this week or next but still it will be awhile before we could go if at all. I don’t know if I can take this much longer, I am used to working at least one job if not 2 or 3 and I haven’t worked since March 15th of this year and I can hardly do anything at home either right now although I did get my powerchair yesterday so that may help some. Sorry I guess I needed to vent some but also I guess I am at a loss at what to do. I do my excercises everyday mostly at least twice a day but there have been some days that I cannot even do that. I guess I thought that after all the time I spent in hospitals and clinics for my son that I could handle this too but I am not doing so well with my own medical. My son always tells me that it will get better eventually but I need patience (yeah right!) but I just stay frustrated with everything, especially with the holidays when I am usually constantly on the go. Anyway thanks for letting me vent.
Jody:( -
December 7, 2007 at 10:18 am
Hi Jody,
Sorry for all of your problems. Two things, Since you recieved one bag of ivig (which is useless if not given the full loading dose) the spinal tap, if they could actually do it, would probably show up negative for elevated protein. The ivig would change the results. Additionally, it is possible that you would not have an elevated protein in the spinal fluid if you have a varient of cidp. The variant I was thinking about is MMN Multifocal Motor Neuropathy. Either way, they all get the same treatment, ivig. You have to do something, call the foundation and ask for a doc name in the next state over. If money is an issue, maybe after locating a doc you could call that hospital and see if they have some sort of hardship policy. Please get help. I am praying for you. We too are starting a battle with our doc, he wants to put Kevin on Cell Cept even though things are going perfectly.
Dawn Kevies mom
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December 7, 2007 at 11:17 am
I can so relate to your frustration at this point. I spent 3 months as a patient at St Marys (Mayo) in Rochester, only to be told that there was nothing else they could do for me, as I had the progressive form of CIDP. They had run up my bill to $200,000 in that time period with numerous tests that I now feel I did not need (4 MRIs, 2 spinal taps, CT-Scans, a bone marrow biospy, a sural nerve root biopsy, a lip biopsy, a spinal nerve root biopsy, X-rays, 2 EMGs, etc.) You get the picture…
The Unniversity of Minnesota is where I went after Mayo gave me such a poor prognosis. There I was able to get in to see Dr. Gareth Parry who did not write me off. He was able to stop the progression of my CIDP using chemo & 4 years later I am still stable. I still need AFOs to walk (severe foot drop), & take a cane when I leave the house. But my walking is actually pretty good now, after spending 2 1/2 years strictly in a power chair. I just help you get the help you need before there is too much destruction to your nerves, or that it becomes permanent.
Pam from MN -
December 7, 2007 at 4:49 pm
So sorry to hear of all of the difficulitites you are having. Make mine pale by comparison.
You need to get to an MD/hospital that will do what needs to be done. Your regular MD should be able to assist you with this.
Does the hospital you were in have a case managemm hospI have four times the amount of protein in my spinal fluid that i should ent or social service department. They should be able to assist you. I have four times the amount of protein in my spinal fluid than i should have and in two weeks will hopefully get a final diagnoses. CIDP or?
Pray you get the medical help you need and soon.
We are here for you -
December 8, 2007 at 12:31 pm
How are you this day and did you find any MD that will take over?:)
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December 8, 2007 at 10:23 pm
Dawn sorry to hear your problems from your doc. Go with your gut feelings they will never fail you. I always did that hen I dealt with my son’s doctors. Since they said he would only live a year and now he is 16 so I guess my gut feelings worked so keep up your spirits and your fight for your son. I am seeing this other neurologist on the 19th and we will see if she is worth my time and energy. Thanks Pam I am going to give my doc the info on dr Parry maybe he will call him. I like the University hospital we have been there many times for my son Kendal and they were always helpful. I wont go to mayo ever again. I called about my disability again and wonders never cease she told me that they send 1 out of 3 to denver for quality control and of course mine is that one so it will be another weeks at least before i know anything. I think this will be the worst christmas probably ever. we are behind on bills and still need to find a way to carry my power chair around with the car we have and nothing seems to be going right. oh well we will see nothing else to do but wait and see as usual. it does give me time to research everything i need to take to the neuro before i see her. thanks again and hope you are all doing well.:)
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December 8, 2007 at 11:35 pm
I do have a regular minivan, but it does have a lift for my power chair, so I could take it out with me if I wanted to. I did in the beginning (3-5 years ago) as I was totally unable to walk. But we still found it much easier to just throw a manual chair in the back, quicker as well. The only bad thing thing was then my husband always had to push me around. But maybe you could find an inexpensive manual chair until you figure out a way to get the power chair around? I saw one in our local newspaer for $50 the other day; but it probably wasn’t the expensive light kind that I have. Sometimes people even donate them after a loved one has passed on…
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December 9, 2007 at 5:20 pm
Thanks Pam and I do have a manual which we have the same problem with my husband having to push me around and it gets complicated when we have to go to the store and use a cart also with pushing a wheelchair which was kind of why we got the power chair but I really wanted a scooter like my mom uses because hers can be broke down to fit easily in the car but the doctor said that holding my arms out in front of me like they would have to be with a scooter would not be good so he said the power chair which we did not know would not be able to be broke down easily nor much. Oh well have to figure something out or try to find a used ramp carrier to put on a hitch. Thanks though this is getting more frustrating by the day soon to be by the hour the way my luck is. The chair does help around the house though and my husband does not have to come home at lunch to help me to the bathroom at least now. 🙂
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December 9, 2007 at 6:06 pm
Jody, we found ramps at a Bomgaars store, they are ATV ramp have straps and hooks to attach. We found them on sale for $64, a great price.
Regina
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