My newest visit with the Neuro
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July 23, 2008 at 5:33 pm
My newest appt with my neuro left me a bit frustrated.
In feb/mar I got hit with an infection that left me barely able to walk, unable to dress myself, unable to shower by myself, unable to take care of our 8 year old child, unable to drive,couldn’t make dinner, unable to get out of a chair, couldn’t bend over, etc. I had tests, and more tests of which nothing showed up definative. 2 of my newest neuros thought I had CIDP due to my past history of illness, weakness and then recovery (and regaining strength). By June (with no treatment) I was improving and walking with a cane with some help with my husband and I was able to drive and get dressed myself. The neuro noted that I was improving and he also started me on pulse steroids (250mgs once per week) at this time.
So now it has been 6-7 weeks on the steroids and I saw the Dr again. Now I can walk mostly without a cane (although I carry it just in case as I sometimes need it going up and down curbs) and I can bend over fine and pick up stuff. Everything I couldn’t do in March I can do fine now. Yesterday I drove an hour to a farm and picked raspberries and then black currants, had lunch, drove an hour home, made raspberry jam, made dinner, and walked a mile in a neighborhood which is full of hills. I still do have problems such as the top of my foot up to my lower shin has not much feeling and this makes walking hard…it is improving though (the feeling is starting to come back), and I walk very slow. My Dr did his little neurological tests checking out how strong I am…and he said that my legs are slightly better than before Prednisone but my arms are no better. he said it is too early to say whether or not the steroids are helping. I told him that I’d like IVIg…but due to my tests not being definative that would probably be hard to convince the insurance co. He’s believes in pulse steroids and has written papers along with Dr Parry. I hate his little tests as they are so subjective. In April when I saw him I was weak as a kitten and had no strength. In June, pre-steroid, I was stronger but still very weak. Today he was pushing hard (even grunted a few times) and he said I was no stronger…yet I was able to keep my arms in the position he wanted and he was not able to move them (or very much). Because he said I am not improving fast enough (due to his subjective tests) I need to stay on the steroids longer (2 months). I was hoping that he’d be able to convince the insurance co by now with my improvements,..but that is a no go now.
I know I should feel happy that I can move again, but this visit left me doubting how far I have come (although writing them down does help me see). I use to compete in dog shows and I am thinking of competing in 6 weeks even though I can’t run (although I can do a slow run). That dog show is what I am working towards now…it keeps me going.
The Dr though, left me doubting everything. I have to wonder how fast is it possible for a person to improve as I think I was doing pretty good but obviously not good enough.
Sorry for the rant, it is so darn frustrating sometimes as I am sure everyone feels.
Kristin -
July 23, 2008 at 5:51 pm
When you say your tests were inconclusive, did anything show up? i am guessing they rules out MS? Had MRI’s? steroids can be effective for CIDP, but there are long term complications, and it usually doesn’t just go away. so what are his long term plans for you?
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July 23, 2008 at 7:30 pm
I had a LP which was neg. EMG was inconclusive for demyelination. I have had 2 MRI’s thru the years, both were normal. Numeous blood tests…all normal. I only get muscle weakness when I get ill…always in Feb/March and sometimes in the fall. The springtime weakness is usually severe whereas the fall illness may or may not make me weak. I have always recovered spontaneously inbetween illnesses in the past almost to the point before I got sick. So far his plans are to leave me on Pred and then re-evaluate in 2 months. From there who knows as he said that if I don’t recover faster then it probably isn’t the pred that is helping me (ie I always spontaneously get better)…although as I said the testing is subjective and I am tons better than before I started pred…but he doesn’t remember how I was before and I do. If it is the pred helping me, then perhaps he can convince the insurance co.
Sorry just frustrated with the testing…and the insurance co who wants definate proof.
Kristin -
July 23, 2008 at 8:00 pm
Kristin-did you ever get a second opinion? Or maybe a second recent EMG to show any demyelination to justify to the ins. co. the need for ivig? Frustrating it is—
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July 23, 2008 at 9:04 pm
🙂 Hi Kristen: Have you been tested for Lymes….Or the million other things that mimic this cidp stuff… My personal doctor originally thought I had Lymes spelling..:confused: .. I’m taking the methylpred.. like you are, for cidp treatment.. I can’t say it has done anything for me yet.. I’ve been on it for about 8 weeks…This is supposed to take over and cure the inflammation/nerve damage.. However, I’ve still had to have ivig to keep things in check… I hope you get a better response… On the bright side, there are more than one treatment option for you and me; as well as second opinions… Good Luck, and I hope it helps you to know that many of us are going thru the same kinds of frustration.:mad: .. Almost trial and error…:eek: P>S> My kids like it when I put the little faces on the storyline..sorry…deanop
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July 23, 2008 at 9:13 pm
Hey Kristin,
I hear you on this. It is difficult to measure, especially if you make improvements on your own. then you have to ask, was it the meds or that your system handled it. I’m going through that now. My Doctor is a big steroid fan too. You have a look at the protocol in the B-12 deficiency thread if you havn’t already. Sue put it in there. Apparently these doc’s don’t follow that. They tend to take it from their own playbook. You can shop around for a doctor that will agree with your idea’s on treatment but that is hit and miss.
Or play along with things and maybe he’ll change his decisions on what is best long term. You seem fairly young having an 8 yr old. Eventually a long term plan will become necessary. Pay close attn to all listed side effects and if you see them coming on, then the medication switch will be justified. I have become very impatient about a treatment plan for myself. I have improved on my own and after my next test result, he wants to start 3 mo trial on steroids. I will go along with that for a while, but eventually I would expect to try perhaps the cellcept or other drugs.According to that Protocol I mentioned above, I don’t know how widely accepted that data is, but that starts out on IVIG and then based on how the patient does, switches around and steroids are down the line and eventually discontinued. I understand quite a bit how you feel as far as being treated with the best possible treatment asap. It is frustrating and stressful to wonder how much accumulated damage will occur until complete stability occurs, if it even does.
The toughest part is that you present all the symptoms but do not have enough criteria to make a definite diagnosis. The web site’s kelly listed
[url]www.cidpinfo.com[/url] has the current clinical and laboratory items required
to establish potential, probable and definite diagnosis. Perhaps improvement on the steroid will bump it up one closer to definite.Good, luck, I plan on watching your situation as a personal interst in how this develops being I am in the same boat as you. I am missing the elevated CSF protein component, so I am in the probable slot. I have lots of EMG data showing conduction and demylination, atypical clinical data, plaque on brain MRI etc. know remittance and triggered by surgery and they are still scratching their heads. Like I said good luck, try and line up a couple of opinions on the issues, I am going to as well.
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July 23, 2008 at 9:34 pm
Kristin, I was on steroids (prednisone) for only three weeks. I told my doctor they weren’t working and he told that to the insurance company. No tests were done. On his word that the steroids weren’t working, my insurance company (Louisiana Blue Cross) allowed him to begin IVIg. Perhaps you don’t need documented test results to begin IVIg. Your doctor can probably put you on IVIg and get the insurance company to pay, based on his word. However, it doesn’t appear that he really wants to do that. Perhaps it’s time to have a serious discussion with him and tell him that if he won’t prescribe IVIg, you’ll find a doctor that will. He has no right to use you as a test subject just because he writes papers on pulse steroids. Remember, the final decision regarding treatment is yours. He recommends…..you decide.
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July 23, 2008 at 10:13 pm
[QUOTE=Emma]Kristin-did you ever get a second opinion? Or maybe a second recent EMG to show any demyelination to justify to the ins. co. the need for ivig? Frustrating it is—[/QUOTE]
Second opinions?:) …4 MD’s told me everything was in my head (pass the antidepressants). 2 neuros said nothing was wrong with me. 1 MD said I had Fibromyalgia. 2 more neuros said CIDP, although both are out of the same clinic (different locations). I know of 2 other places that are recommended…both use pulse steroids, so I don’t see a reason to try them.
I pretty much don’t like Drs as no one has ever listened to me (other than an endo) and being told that something is in my head when something is obviously wrong neurologically just irritates me. I figured out that I was hypothyroid (and not by a DR) and when I finally convinced an endo to treat me 13 years of pain left me. I have my suspicions as to what causes me to demyelinate and am taking care see if that is the case. Interestingly I got sick last week and did not get weak as I usually would. Yeah! One would think that the steroids are helping me except that my husband got sick too…worse than I did. Theoretically I would have though I’d have been sicker as I should be fairly immunosuppressed by now due to the Pred. So I have to wonder if the extra care I have been taking is actually working. Only time will tell.
I have had 2 EMG’s recently. The first time was when I could barely walk…I didn’t see the writeup but that Dr thought I had ALS or something just as bad. The one thing that ALL the Dr’s above (5MD’s and 4 neuros) have in common is that I do not have MS or ALS. The second EMG I had a month and a half after the first and I could see that my physical response to the shocks was improved but it was inconclusive for demyelination.
I have been tested for lymes many times, negative. Of course I wonder how accurate the tests are as I use to R&D immunoassays and know that some kits (lymes included) have high rates of false negatives.
I mentioned to my mother abt my frustration with the insurance co and she told me that I live in a state where insurance co’s require more substantial proof than most other states. That seems to coincide with what the Dr has been saying. I suspect that is why I hear more cases of pulse steroid use in my state than some others.
Thanks for the 🙂 Deanop I was wondering how you were doing on your pulse therapy.
Of course I should not be whining as I am improving albeit slowly.
Thanks everyone! -
July 23, 2008 at 10:57 pm
forgive me Kristin for the dumb questions. I forgot all you have written me.
Sorry, I forgot to read your initial postings and got caught up in your current post.Emma
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July 24, 2008 at 2:06 am
Kristen,
It’s amazing how doctors think it’s all in your head-especially women. After 14 months of IVIG I started crying one morning in the infusion clinic. The nurses all asked if I’d stopped my anti-depressants. I replied I’d never been on them and was just SO tired of infusions”’ They said I needed to stop crying so I dragged me and the pump cart outside and sat in my car (with the door open to hold on to the cart). Yes, I did.I’d been to my share of doctors. One day I accidentally went to a well know neuro for a consult concerning 2 back surgeries that were suppose to cure my useless legs. He said lady you don’t need back surgery and what you do have is serious.I’d found someone who listened AND cared.
It’s a wonder any of us got a correct diagnosis at all. -
July 24, 2008 at 9:15 am
Emma
Your questions weren’t dumb. How will anyone know if they are doing enough for themselves and their health without you and everyone else giving thoughtful and experienced advice. Hopefully my post didn’t seem like it was singling you out as I was just trying to do one post vs many.Limecat, telling women that it is in our head seems to be very common. I am on a thyroid list and this is the #1 grievance. These women are told that all their hypothyroid symptoms are in their head, but when they get treated (either by self treating or switching to a holistic Dr) those symptoms go away.
Thank you everyone for your comments
Kristin -
July 24, 2008 at 9:18 am
It seems every doc I’ve seen started out thinking my symptoms were “in my head”. My neurologist couldn’t accept initially that my symptoms came on as quickly and progressed as quickly as I experienced “I’m sure you just didn’t notice the symptoms”. (It’s rather hard to not notice “drop foot” when you’ve a runner.)
I’m sorry Kristen and “limekat” that you’ve had to go through the same skepticism, but it’s transgender… 😉
Gary
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July 24, 2008 at 10:10 am
Hi kristen,
the one part of your story that is a question is having these symptoms be seasonal. That would make me question CIDP. That might be wrong, and i am not a physician, but i haven’t seen reference to seasonal inflamation. short term prednisone use is not always a bad thing, long term has lots of problems. i don’t really know what to tell you except if you don’t feel like you are getting answers, or the treatment you want, you should probably get a second or third opinion. good luck to you though, i’m sure you are frustrated to no end…..gabrielle
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July 24, 2008 at 10:25 am
Hi Kristen:
Listen to what you body, and your instincts tell you… Don’t give up… I went to several doctors in the course of a couple of weeks when this gbs/cidp first hit back in october 2007.. One ER doctor pretty much thought I was making the whole thing up, and she had no clue… Next day, I went back to ER, and different doctor took lumbar puncture, and put me on a stretcher straight upstairs to the hospital hilton for the next 5 days, and was really touch and go..So they don’t always know!
I’m currently taking 500 mgs methyl pred. (in answer to your other post).. I’ve also, been on the ivig monthly, as methyl pred (pulse) hasn’t made a dent in the symptoms.. My positive experience thus far is nil. Although, I have had a lot of negatives to share.. At least 2 out of 7 days during the week are seriously disrupted due to effects.. I’m still hoping for some positive testimonials on this site; I know there of at least one person who is having positive results, so that is encouraging… I think maybe its just gonna take longer…. deanop
PS>> I agree with gab111 intrepatation of your symptoms.. Pred may not be a bad thing in your case.. I just don’t know enough about it.. You may have some sort of severe allergy? Your house? your environment? Stress? I hope your husband is being a good help on navigating this medical maze…… -
July 24, 2008 at 10:37 am
Oooh I knew I’d get told its transgender 😀
As for my seasonal symptoms, there is one thing I know that causes seasonal inflammation…low vitamin D. Low vitamin D has been implicated in the increase/and onset of autoimmune diseases and there is some indications that it can help some individuals even after onset of disease. Is this related to CIDP, I don’t know. All I know is that I have symptoms of CIDP and other diseases have been ruled out. I do appreciate everyones answers as they give me more questions to bring back to the Dr.
Thanks!! -
July 24, 2008 at 10:51 am
Hi Kristen: I don’t know if you are referring to being female patient.., or my experience being treated by a female in the er.. I’m still shaking my head, as to what er doctors, actually hear or listen to.. When I went in to er admitting the 1st time I told them I was in excruciating pain (9 on a 1-10).. The er doctor (she) , evidently never bothered to read my symptoms, and at the time didn’t prescribe pain meds.. She gave me a placebo!, and sent me home.. The next day as I was going upstairs in a stretcher, she came and apologized to me… I felt bad for that dr. , and hope she learned to listen! It really has cost me in terms of my health, this mistake! deanop
p.s. What about b12? My wife’s coworkers mom, had paralysis, and b12 was the culprit? O.K..I reread the post by GaryH; sounds like a lot of us have a problem with diagnosis…… -
July 24, 2008 at 2:27 pm
Kristin
Has your neuro suggested a sural nerve biopsy as a diagnostic test option? I know many on the site talk this test down because of bad results and residual pain, etc, but mine went fine and have never had any residual side effects from it other than the “dead” spot where the nerve was removed, but it did give the doc a positive cidp dx. It can be frustrating for sure. Hang in there.
Fred
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