newest Dr visit
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April 6, 2009 at 3:11 pm
So I saw the Dr in January. He gave me 3 more months of IVIg to see if I improve. He noted that my walking was much better.
I just saw him again. He said that my strength is the same as last July. I am sorry but last July I had just started walking from the car to the grocery store using a cane 100% of the time. Before that I could not do that. Now I bring a can with me but walk 80% without it. Now I can walk on a beach in the sand barefoot, last july I could barely walk in my level backyard without my ankles turning. Before I started IVIg last Sept, my left ankle was numb along with most of my foot. Now I can feel my ankle albeit I still have a 1.5 inch circle on the top of my foot that I can feel, albeit not the best. I am seeing improvements although they are slow. Sigh.
So because he said that I did not have a dramatic improvement these last 3 months on IVIg and because I did not have a positive lumbar and my EMG was strange he undiagnosed me. So now I am left hanging in the breeze until I see him in a few months. All he says now is that I have some type of neuropathy, will wait and see how I am after this last dose of IVIg runs it’s course out of my body.
I am frustrated as my hands have indeed gotten weaker. I have radiating pain from my neck to my hands, plus headaches. I have complained about this for a year but as usual. it was brushed aside. Finally he is going to give me a MRI. My legs and feet have been getting stronger…I am thankful for that.
13 years of misdiagnosis and Drs not listening to me. I wish I could touch them all and have my symptoms run in their body so they would finally listen. -
April 6, 2009 at 10:47 pm
Kristin,
Request your records from your doc and go over them so you can show the discrepencies. Did you have a ncv/emg before? If so, ask for another to compare. A skin biopsy or nerve biopsy would be proof conclusive. I will write more tommorrow, Kevie is having trouble sleeping, I have to go now.
Dawn Kevies mom -
April 7, 2009 at 1:32 pm
Kristin, I feel for you. I understand how you are feeling. I’m going through much of the same, except my 2 drs do hear me but are either limited by insurance or just unsure of what to do next. Right now I am on hold until I have another paralysis event-then I will have to get tough with the drs down here to do the tests immediately or go up to the university and have them do the tests against my insurances’ approval.
A skin biopsy will only tell you if you have nerves in your skin, or if you have a decreased amount of them. I just had a sb performed and it came back with a mixed findings-lower leg has small fiber neuropathy while the upper leg showed more nerves then the lower has. soo as you can see it isn’t all that great of a dx test. It is an easy test if you have sensory issues though. I’m still healing from mine-but I’m a slow healer anyways, my test was on the 20th of March.
Don’t give up on the dx even though thats what the dr has said, not everyone fits perfectly into the dx square. I’m still hearing that among other things. If you regress after going off ivig you will know the good that you were seeing from getting it. Keep a journal of how you feel, what made an improvement etc. Drs tend to read things and absorb more from what they read as opposed to what is said to them. Just what I have experienced anyways.
Hope you get a true dx soon. Take care. -
April 8, 2009 at 1:54 am
Kristin,
I understand where you are. Something is very wrong you can feel it. Something is not right and you know it. It is so frustrating to go back and forth with a neuro to get some tangible answers, answers that you can rely on and begin to deal with.
Before you go to your next visit, take time to write down all your problems, successes, and backslides. When do you do good, when do you go downhill, hot days, cold days, steps, longer walks, fatigue, whatever. Take your time assembling the information. Get it as right as possible.
When I started making these notes prior to my visit, it made my visits so much more productive. he knew what I was concerned about and answered my questions better. I wrote my questions down as well. It got to the point where he would take my paper first (I made two copies, one for him, one for me) and then do the visit. He understood my situation better.
In your case, maybe he confused you with someone else. Maybe he wasn’t remembering well, maybe he was feeling different the other day. I never held much stock in a five minute, “squeeze my hand”, and “lift your heels” and “spread your fingers” and the like. Let him know how you function at the end of the day.
I really feel for you and I know that dealing with mis-diagnosis or no diagnosis can be so frustrating. Sometimes it seems like the neuro’s act like they know everything and they treat you like you don’t know anything and certainly can’t comprehend all that they know about your situation. Bull-hockey !! It makes me mad !!
Try the notes, I am sure it will help “educate” your neuro.
Take care
Dick S -
April 8, 2009 at 11:53 am
[QUOTE=Dick S]
Before you go to your next visit, take time to write down all your problems, successes, and backslides. When do you do good, when do you go downhill, hot days, cold days, steps, longer walks, fatigue, whatever. Take your time assembling the information. Get it as right as possible.
[/QUOTE]You are fortunate if Dr’s read your notes. With the exception of 1 neuro and one endo…all other Dr’s in the past 14 years I have ever had (there have been lots), including the current neuro, look at the notes for 2 seconds and hand them back to me and continue on as if they never existed. I believe that they don’t like listening to symptoms as they feel that you are self diagnosing. Sounds stupid, but they put more stock in their tests vs listening to me discuss myself.
It is those darn biased “squeeze my hand”, “lift your toes”. etc and the rate of my progress which ultimately has determined my new “undiagnosis”. It is the times where he is pushing so hard he shakes when he says I am weaker, yet the other times he puts no force into it he labels me stronger. I have repeatedly challenged him on the July 2008 testing and following months and he has conceded everytime that I was indeed stronger than the previous visit…but he never changes his darn notes to reflect this. He also expected me to improve substantially quick with the 3 doses of IVIg…to him if you improve slowly that means that the IVIg is not working.
Perhaps he is right. I don’t know.
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April 8, 2009 at 12:59 pm
He is not right! Some patients like Kevin respond within hours after the first initial dose, others take several loads to respond. Now that Kevin is no longer demylienating and healing, the ivig shows no improvement because he is 100% But stop the ivig and the symptoms would return. Perhaps you could gently suggest that for your protection, you would like him to reaccess the notes and update accordingly so that the insurance could use the notes as reference should more ivig be needed. If a pattern is established that ivig did result in increased stregnth that pattern could be the final determinig factor in additional ivig. On a positive note, you could take this opportunity of no ivig to see if you are in remission. If you do not get worse and symptoms do not increase, that would be good. On the otherhand, although the outcome would not be positive, the evidence would. If you do get weaker and symptoms occur agasin, the doc could not argue against continual ivig to hold attacks at bay. I am so sorry you are going through this. Best of luck.
Dawn Kevies mom
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