AnonymousMarch 26, 2009 at 5:30 am
I am feeling a little confused and frustrated … Since last fall I have added a host of new symptoms that on the surface are minor but are confusing to me and apparently my doctors as well. The most annoying is that the palms of my hands and bottoms of my feet get red and swollen. I’ve been told my blood vessels are dialating, that this is an autonomic problem by my Rheumatologist, that it’s an autoimmune disease (other than CIDP) by my Neurologist and that there is nothing I can do about it no matter the cause and that it won’t hurt me.
I am trying to get a host of Rheumatological tests done but believe it or not I’ve spent nearly four months now trying to get the right form for the tests. At any rate my Rheumatologist says that IVIg can cause a positive ANA. Has anyone heard that before? My neurologist says absolutely not. While they cannot seem to agree on the IVIg/+ANA test or the cause of my pink hands they both say it won’t cause permanent damage, just uncomfortable. It may seem like a minor problem but at times they are so swollen with blood they bruise by such simple things as walking or grabbing something too hard. It’s not a permanent condition, it comes and goes without any noticable pattern (so far) but I can count on both sets getting red when I do any activity.
Meanwhile my other autonomic problems have not gotten any better and in some cases seem to have gotten a tiny bit worse. My eyes are opening up at night again and have gotten more dry (which could just be Spring), my bladder still leaks and is no better, my right eye still won’t dilate and constrict properly, I don’t sweat anywhere except the palms of my hands and so overheat easily… etc. etc. Despite this I am better in other areas – my legs are much stronger than they were aside from the foot drop, I have more stamina most days, my face isn’t as droopy all the time and so on. My EMGs and NCV show improvement and nearly normal velocity, F waves and so on. A big huge thank you to all plasma donors for saving my life and sanity… but I’m not getting how I can be so much better in a couple of specific areas, the same in some areas and worse in others. How can I be getting worse autonomically when my peripheral nerves are getting better? And on top of that my neuro says that since my blood pressure is leveling out (it doesn’t drop so much when I stand anymore) that I must be getting better autonomically since that is the test they use to see if you have autonomic problems. OK… so because my blood pressure drops only a few points now that means I’m imagining my bladder leaking more, my new fancy red hands etc.? For those of you with autonomic problems what symptoms have you had? What improvements? What tests have then run (aside from the tilt table) to determine if you are improving autonomically or not?
I’m frustrated with my neurologist, rheumatologist and now the endocrinologist as well. The Hashimoto’s thing is back on the table again after getting wiped off… apparently when the endocrinologist said I don’t have Hashimoto’s she wasn’t running the right tests – she didn’t test for the antibodies and my antibodies are 10X the max. rate. So now I’ve got to find another endo as well, someone who actually knows what tests to run. And how scary is this – not only did she not run the right tests but she put me on medication for hypothyroidism without running ANY tests and then called me two weeks later to say I didn’t need to take it. Sigh. The really frustrating thing is that I sort of see my family practitioner as the person who coordinates all this stuff – knows which docs I’m seeing for what and so on – but he doesn’t, is scared of me and all my problems and wants to see me as little as possible. Double Sigh.
The only doctor I’m happy with right now is the Dermatologist who gave me a clean bill of skin health Tuesday – no more skin cancer!!! 😀 A little dab of Vit. E every day and you can barely see either scar two weeks later.
Sorry to unload on ya’ll but sometimes I feel like screaming when I wait three months to see the neurologist and he has already decided how I am feeling before I get there, doesn’t ask me any questions and spends the entire visit telling my husband what I need to do instead of talking to me. 🙁
P.S. Have I mentioned that my frogs are breeding? I have tadpoles! A whole new level of life to experience! They are cool when I can find them at all – about the size of a pin head… 😀
AnonymousMarch 26, 2009 at 8:32 am
I have a similarity with you. My feet have been red and swollen. When I was at my worst, I couldn’t even Identify any veins. usually my feet were slim and veiny. the top of my feed are red all the time. when I get out of the tub,
they are deep red kinda scairy red.
Of course mentioned it to the docs. they gave no answers. I felt It may be inflammation. Since IVIG it seems to be much less. In any case, I am always looking and watching the feet. So I have attributed it for now to the fact my feet got bad first, they are the last to get better.
After gaining lots of strength back since Jan. I still have alot of aching and pain below the knees. Doctor is still stuck between MMN and CIDP.
Roids made me much worse so MMN. Pain and sensory issues CIDP.
I believe I am a cross over or varient between the two.
Sorry about the bum endo doc. when you find another, if they fit you in right away, that means they may not be worth it. From now on, I book doctors with long lead times getting in!
My IVIG nurse is on her way to the house now so I must get off and go get my veins pumped up. See Ya Julie. All the Best for you–tim–
AnonymousMarch 26, 2009 at 9:18 am
Julie – How freakin’ frustrating!
I don’t know about the red hands. I bet they are great accessories for Christmas, Valentines Day & 4th of July though. My first guess would be a circulatory problem. I Googled “red hands & feet after IVIG” and Kawasaki Disease came up. But that’s found in kids…but since you don’t seem to present with anything normal, I thought I’d mention it.
IVIG can affect ANA results. It did with Emily – it showed she was borderline (or low, I can’t remember exactly right now) positive for Lupus. She clearly does not have Lupus & the tests done before she ever got IVIG were negative for it.
It was explained to me that the antibodies in IVIG can affect a whole range of blood tests from false positive ANA’s to false positives for H. Pylori.
I wish I had an answer for you on why some things are getting better & some are getting worse. Maybe there is another cause for it that the dr’s have missed. I really wish I had some suggestions for you on it. I can’t imagine how frustrated you must be.
As for wanting your primary dr to coordinate all the other docs…it just doesn’t look like that’s going to happen. He probably realizes that you are out of his league & rather than doing & saying something stupid he’s just avoiding you all together. I think you need to turn into a “big B” & start kicking these dr’s butts in gear.
YAY for the skin cancer being gone!
That’s really cool about your frogs. Emily’s class is going to be watching caterpillars turn into butterflies soon. I am excited to watch that! Emily almost convinced to me adopt a cat a few weeks ago. The pet food store we go to has rescued cats for adoption there. They had the sweetest black cat ever & she was only $75 but wasn’t spayed yet. My husband says we don’t need another pet because we have the dog, a 14 year old half blind cat who does NOT play well with others & a hamster that has gone crazy & bites. Sigh…I really want that cat though.
March 26, 2009 at 12:02 pm
sorry no info
AnonymousMarch 26, 2009 at 1:09 pm
As you have seen in some of my posts, I have full autonomic involvement from my CIDP.
You ask if there are certain tests…
Going back, I remember the one main test I had done a few years ago to show autonomic involvement, was to have a skin biopsy done. And if the result shows “small fiber atrophy”, then most likely you will have autonomic involvement.
I had had a nerve biopsy done way back in the beginning, that helped them to get to the Dx of CIDP.
But the skin biopsy was to see to what extent the CIDP was doing, since it was progressing.
If you “google” small fiber neuropathy, you will see some of your answers, and if you actually go to the CIDP Foundation site, here is a quote right from there:
“Autonomic neuropathy is a type of peripheral neuropathy in which the very small nerves are damaged.”
As my CIDP progresses, it has caused:
Dysautonomia with dysphagia and gastroparesis and esophageal dysmotility, tachycardia, syncope, neurogenic bladder, and phrenic nerve dysfunction with hypoxemia; and with Horner’s Syndrome; Benign autoimmune thyroid disease; Anemia; Hypothyroidism.
I have a urinary catheter now, and am on a TON of pills now…as it hits another organ it usually means more pills to take. And I am on monthly chemo now to slow the progression.
Some other tests different doctors did to show certain areas of the autonomic system were being affected:
-Monthly blood tests.
-With the dysphagia/gastroparesis/esophageal dysmotility: They did a “Swallow Test”, in which you are given different things to eat and drink, and they record it on x-ray. It is recorded, and it was shown back to me the problems.
-With tachycardia and syncope, that was just they simply monitored my pulse, (which was around 120-130 before I got put on a pill to control it), and monitoring the blood pressure when sitting then standing quickly, (usually a drop in blood pressure). Also, I was told this by my primary care doctor when he observed this, that my feet were red and swollen. He said it was definitely not a back up of fluids, (i.e. using Lasix). But that the peripheral nerves also assists in blood circulation. Due to the CIDP, and the loss of the peripheral nerves to assist the circulation, he said the blood tends to “settle” in the feet. Back when it first showed up, they did various cardiac tests to rule out cardiac disease or problems, and could only be explained by the CIDP.
-Phrenic nerve involvement with hypoxemia: the pulmonologist did various tests, of which I cannot remember the names of the tests–I just remember breathing into various tubes and gadgets, with x-rays as well. They also did Oximetry on me, which is that little clip they put on your finger to show them what your O2 saturation is. End result at the moment- my lung capacity is at 43% and my O2 saturation is down to 80.
-Neurogenice Bladder: the urologist did these very strange tests on me, which I can’t remember the names of them, but one was he put fluid in and recorded if I could keep it in or if it just came right back out, (mine came right back out, which shows the sphincter not to be working and more, and can show incontinence). There was also another test he did on me, but I can’t remember how it was done, but the end result was a neurogenic bladder, which can lead to incontinance, and UTI’s.
-With the thyroid problems: they monitor by three different blood tests. I remember the endocrinologist also had an ultrasound done of my thyroid. I am on thyrod pills for it.
Julie, I hope this helps with what kind of tests there are.
Luckily, I have some very good doctors. My primary care doctor very good, and if I have the slightest problem he either takes care of it himself, or sends me to a good specialist.
I went through three neuros. before I got the one I have now which I like alot. We can have discussions on anything I question. He is a specialist in neuromuscular diseases, and is head of Neurology at the local hospital.
With my rheumatologist, he is great, (he is in control of my chemo.), and we have had talks about the progression of the CIDP.
With the endocrinologist I used–I cannot say I liked or disliked him. He was there to mainly conduct all the tests involved, then the results and suggestions were sent to my primary care doctor to do treatment.
So, I think you need to keep looking for a good primary care doctor–get suggestions from friends and family. And with a good neuro.–get suggestions from people here in your area, or the foundation might be able to suggest one.
Hope this helped. And I do highly suggest to keep trying different doctors until you find one that treats you as a human and not a file number.
AnonymousMarch 27, 2009 at 4:54 am
THANK YOU SO MUCH! Ken your information is [U]exactly [/U]what I need. I think I’ve had a couple of those tests done – I remember the swallow study… but I’m making a list of the other ones.
It is frustrating and I agree that I need a new primary care doctor – I’ve had this one for 10 years or so and never had any real reason to see him until I got CIDP. For a small town rural doc I think I’m kind of over his head. There are a couple of others close enough that I can drive to but otherwise we get into that realm of having someone have to drive me to appointments – which is a big favor to ask.
You know – no matter what kind of frustration I have I know I can come here and someone will understand. What would we have done without the internet?
Happy Friday ya’ll,
AnonymousMarch 28, 2009 at 2:15 am
I have already sent you an email, but was thinking that I also had the red burning feet after my first attack. Now, my feet just burn but they don’t go the brilliant red anymore. I thought (when suffering from the the redness) that it was from inflammation caused by the CIDP, but that’s very interesting what Ken said in his post about peripheral circulation.
That’s great news about your recent nerve conduction tests!
Hang in there.
AnonymousMarch 28, 2009 at 12:16 pm
Those malfunctioning nerves we have do affect our vascular and lymphatic systems immensely….
Web up the ‘electronic textbook of dermatology’ at telemedicine.org/stamford and go to the ‘diabetes in skin disease’ on the left index. It explains how our systems don’t communicate well and what happens…be sure to read both the Abstract and the Introductions… it’s very informative..then go from there.
Vascular and lymph systems are autonomic tho we take them for granted and the nerve connection is fascinating but helps me, at least, understand what all is happening.
Hope this helps!
AnonymousMarch 30, 2009 at 9:44 pm
I just wanted to say, hang in there and just keep reporting your symptoms. Eventually someone will hear. I am in the same boat with my General Practitioner and tomorrow am interviewing a new one. It is so hard to be the captain of the ship when you can’t even see straight enough to steer it!!!! Be well.I’m thinking of you.
AnonymousMarch 31, 2009 at 7:22 am
I haven’t been on here in quite some time, it’s good to be back. I just spent three weeks in the hospital with pneumonia and sepsis. I know your frustration with primary care docs. While I was in the hospital my PCP was completely clueless with what was going on with me. Not to mention overseeing the meds and treatments for CIDP. He stopped my prednisone that I take for adrenal insufficiency because my breathing was better…..?!?!?! Anyway, I just interviewed a new doc last week. I explained what I needed from him, to “oversee” my care because the specialists zero in on their specialties and basically don’t take any other conditions into consideration. Blessings on finding a new PCP, you’ll be happy you did.
I was diagnosed with neurogenic bladder, I had constant kidney infections but no UTI symptoms. I had testing done by the urologist and he said that there were a couple of options for me. Medication had been tried but didn’t help. My choices were to cath myself a couple times daily or I could be tested for a urinary pacemaker. The pacemaker will stop the leaking and help to completely empty the bladder. I am going to be tested to see if I am a candidate for the pacemaker next month. Thought you might want to look into this for yourself. The urologist said that the neurogenic bladder is from the CIDP.
I was also diagnosed with Central Sleep Apnea, this too is from CIDP. I have nerve damage to the muscles in my chest and do not take deep enough breaths for my lungs to function properly. I acutally stop breathing during the night and at times during the day. Pulmonologist said that is why I got pneumonia. I don’t have any of the typical symptoms of obstructive sleep apnea. I don’t snore, fall asleep during the day, wake up during the nite, etc. I just stop breathing. Central Sleep Apnea is a neurological syndrome.
Sorry this is so long, but I wanted to give you some insight on what’s happening. I never realized that CIDP could affect so many things!
Have a great day!
AnonymousApril 1, 2009 at 1:28 am
It’s so important to have a good primary care doctor. I know because I had too many BAD ones. They refused to “listen” and I didn’t know what to do as too ill. Here I was dragging myself in on 2 crutches and they never did anything.
By accident I went to my neuro for a back surgery consult and the rest is history.
AnonymousApril 1, 2009 at 5:34 am
You all make me feel so much better. Thank you for all your replies, I think you’ve given me the courage to seek out a new primary and now I pretty much know what I am looking for too. It would certainly help if I could see well enough to drive myself more than a few miles but I’ll interview the folks I can drive to and if that doesn’t work out I’ll just have to go back to relying on my husband and friends.
Barbara you said something that made me sit up straight again – the bladder thing I’m pretty sure is due to CIDP though to be honest I don’t practice shutting off the flow enough to get those muscles back into shape so some of it could just be me being too lazy to get better. Maybe… But the other thing you said about stopping breathing really made me sit up straight. This happens to me too and it scares me silly when it does. It used to happen more often and I’d lie awake at night so I’d remember to keep breathing – too scared to sleep. Now it’s pretty much only when I’m overly tired or try to sleep on my back – for some reason I stop breathing every time I’m lying on my back. I have told the neuro about this but I’m not even sure he really heard me he moved on to another topic so quickly and since I’ve been mentioning it for the last two years it must not be something that concerns him. But my breathing was a big problem in the hospital and for about a year afterwards. I also don’t take deep breaths and can nearly pass out from lack of oxygen if I’m not paying attention to my breathing. I would never have thought I’d actually have to put conscious thought into breathing but then again CIDP is full of surprises! I seem to do OK at night though last night I was full of cramping so didn’t sleep anyway. Now that I know though is there anything they can do about it other than wearing a CPAP all the time? LOL, I’ll pass on that one!
Thanks again everyone for your replies – it means a lot to me.
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