Parkinsonism?
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AnonymousDecember 20, 2009 at 2:59 pm
I’m wondering how many of you with CIDP have a problem with constant tremors, shakiness, etc.?
The progression of whatever it is that they finally decide I have is causing intention tremors and a general “shakiness” that is quite unsettling. While much of it can’t be seen by people, I feel like (inside) I’m constantly shaking. When I lay down, within a few minutes I will actually have visible shaking and/or twitching. Mostly in my hands, arms, and trunk…not much in the legs. The only thing I get in my legs is when they are bent, similar to a golf stance or skiing stance, my legs will start shaking and get worse until I completely straighten my legs.
Does any of this sound familiar to anyone? Honestly, it’s scaring the hell out of me. My wife and I were talking the other night, and we both have had the thought of, “If it’s this bad and it’s still minor, how much worse is it going to get?!?!?”.
Also, and this is a little uncomfortable to ask about (thank God for the anonymity of the internet!) but, how many, especially men, have urinary effects? Seems I’ve lately developed an issue of having to urinate, which comes on suddenly, and feeling like it’s an “emergency”. Almost as if I can’t completely “clamp down” and don’t have complete control. While I’ve not had any “accidents” yet, it’s a scary feeling and something I need to learn how to deal with.
Thanks for all your input!
Elmo
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AnonymousDecember 20, 2009 at 4:02 pm
Ryan has had tremors from the very begining of his CIDP. He looks like he has parkinsons. Its very hard for him to use his hands because of it. his fingers are partially paralyzed now. Its difficult for him to do simple things like eat and shave because his hands shake so bad, but he still does it. yes he cuts himself when shaving. I can’t watch because it makes me want to grab it out of his hands and do it for him but he has to do it himself. so I don’t watch. he has to be able to maintain some independence as long as he can do it. as for the urinating he hasn’t had any problem with that yet.
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AnonymousDecember 20, 2009 at 4:59 pm
Hi Elmo,
I have CIDP and have a constant tremor in my jaw. I also will develop a tremor in my hands (sometimes arms) if I over use them – to the point I will spill a drink if holding one at the time the tremors start. They will usually subside after resting. I think my tremors are from weakness. They don’t seem to be as bad as they used to be though.
I have found that most of my symptoms have improved over the years (thank goodness) it is only when I overdo things now that they can surface and remind me to take things easy.Kazza
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AnonymousDecember 20, 2009 at 6:42 pm
I Googled “CIDP & Tremors” and got this website:
[url]http://autoimmunedisease.suite101.com/article.cfm/cidp#ixzz0aH8dTIUa[/url]
I copied this paragraph that seems to answer both of your questions:
“Weakness tends to be the most disabling feature in patients with relapsing-remitting CIDP and weakness tends to be more prominent than muscle atrophy. A mild sensory loss is seen in all types of CIDP, and tremor is a common feature. Pain is more likely to occur in patients with sensory CIDP. Problems with urination may also occur in CIDP”.
The MDA neuro I took Emily too for a short time kept asking if she had tremors. Emily did not but the neuro seemed to think it was impossible to have CIDP & NOT have tremors.
Emily too had the urination issue. She would “dribble” all the time. Once her CIDP was under control it stopped.
Kelly
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AnonymousDecember 20, 2009 at 6:53 pm
Thank you all for your replies; they’re all very supportive and interesting. One thing that is also interesting is the brief statement made in the paste by Emily’s Mom about pain and sensory CIDP. I’ve been told that my EMG’s have shown primarily sensory loss. Some motor loss in the arms, but sensory only in the legs. And the pain in my arms lately is incredible! Tried taking Neurontin the other night, and remembered quickly why I stopped taking it a couple of months ago when they had me try it. It really effects my breathing…like a real bad asthma attack! That worries me, too; don’t know if that’s just a reaction to the med, or if it indicates some nerve involvement in my lungs and the Neurontin is just doing its job.
Thanks again for your help; I’m looking forward to my neuro appt on the 5th…hopefully my symptoms have progressed enough to get them to sit up and take notice! :rolleyes:
Elmo
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AnonymousDecember 20, 2009 at 8:25 pm
metabolic blood panel done recently? Get a copy and LOOK at it closely! If you were like me, you will be very low and high on some vitamin, etc. numbers, but…those are NOT the ones to look at closely! The ‘[I]almost[I][/I][/I]’ too low or too high numbers are the ones to watch closely. IF you are one point over [for the low] or under [for the high] numbers? You are OK? Not really, and these are things you can change, and easily, once you know if you’ve too much or not enough of different supplements.
As for tremors? IF you are on neurontin, topamax, lyrica or any of the spectrum of anti-seizure meds or the steroids? You are going to have calcium loss. It is inevitable. Web up ‘hypocalcemia’ and take a look at the symptoms. Do keep in mind that taking many meds and taking calcium have to be at least an hour apart. Read the ‘prescribing information’ of your current meds to look for conflicts… Downing all your pills at once first off in the morning is not necessarily good for you and you have to be sure what goodies can go down with others. It’s a pain, but a necessary one.
Lastly be sure to take magnesium/calcium/vitaminD combo? This way it’s more likely to get asorbed into your system and thus work. At least? With the magnesium, you won’t get stuck up…
I hope this helps! Let us know how you are doing..
PS I too had the ‘tremors’ or any of the other names given to this aspect? Taking the supplements DID help! But don’t expect it to work overnite? It takes at least 2-4 weeks for it to really show a difference. Be patient. It’s hard, but true. -
AnonymousDecember 21, 2009 at 12:47 am
Thanks, Homeagain. I guess I’m wondering what numbers you’re specifically referring to…just vitamin levels, or other things on the panel as well? There were some, as I recall, that were very close to the upper end of “normal”, but I don’t think they were vitamins. I’ll have to go back and review. My B12 was through the roof because I take a sublingual B12 every day.
My wife has always been a big proponent for supplements/vitamins, and at her urging, I recently started taking Vitamin D, 2000 IU’s, per day. Hasn’t been quite a week since I started, and was going to go up to 4000IU’s after a week or ten days with no problems. They have calcium in them as well; the label says that it helps the absorption.
Besides that I take CoQ10 and 2 Grams of Vitamin C per day, along with the previously mentioned B-12.
Not on any “seizure meds” at the moment; was planning on trying to get an appt with my GP for tomorrow to discuss trying Lyrica and also getting a scrip for Prednisone until I see the neuro on the 5th.
While these symptoms have been increasing for the past 4-6 weeks, I’m a little concerned about something else. I’ve had several “branch blocks” and radio frequency lesioning done on my lower back, due to spinal issues. About two weeks ago, I had a branch block on my C7 disk. For those that aren’t familiar, a radio frequency lesioning is what I refer to as a “root canal” on your back. They go in and deaden the nerve endings, reducing pain. The “branch blocks” are a short term trial where they use a local anesthetic, inject into the area of the nerve root, and see if there’s any effect. If they get a positive response during two branch blocks, they will perform a RF lesioning. Anyway, I had a branch block done two weeks ago, during which the doctor not only injected the local, but also injected some cortizone. The tremors and pain have been worse since that injection, but I don’t know if it’s coincidence, a reaction to the injected meds, the result of some mistake by the doctor, or a more simple CIDP reaction to the injection. As I’ve read that CIDP is especially vulnerable to injections/immunizations, I wonder about that.
Don’t really know what to do, or which direction to move in. Will explain all this to my GP tomorrow to see what his thoughts are. Any thoughts from all of you would be especially appreciated. The pain travelling down my arms from the C6-C7 nerve has become excruciating. Went grocery shopping yesterday…after about 30 minutes I had to quit, without my shopping completed, because of it. The tremors are scary, but they’re also annoying. They’re in my trunk and my arms/hands. Often feel similar to shivering from the cold. Honestly, it’s crossed my mind more than once in the past week or so that maybe I don’t have CIDP…maybe it’s Parkinson’s. But, it’s my understanding that Parkinson’s doesn’t cause demyelination.
I don’t know. I just want to find a doctor that will take this as seriously as it feels to me.
Thanks for all your help and input. I really do appreciate all of the time you take to respond, especially this time of year!
Elmo
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AnonymousDecember 21, 2009 at 1:05 am
Hi again,
I have had bouts of “shivering” also. They last for a few minutes to 10 minutes or so. That is a big sign for me to rest! It is wierd as sometimes when I have had the attacks it has been hot – but my brain is thinking my body is cold. I haven’t had them for a while though (touch wood). I never had those bouts before coming down with CIDP. Mine is the sensory form. I also have bouts of electrical sensations in my legs, arms and spine. It feels like I am short-circuiting – it is most unpleasant! This is another symptom that comes on when I have been overdoing things. I take Vit D too. Though, we do get plenty of sun in Australia!Kazza
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AnonymousDecember 21, 2009 at 7:43 pm
I do not have a tremor, but I have some other features that can go with movement disorders like Parkinson’s–spasticity where the muscles work against each other making it hard to walk/move, and slowness to start moving. I also had a sudden onset peripheral neuropathy with demyelination and, when all this started together, severe neck and shoulder pain due to spasms of the muscles. My neurologists do not know exactly how to tie this together, but I definitely am able to walk better with low doses of dopamine (the medication sinemet that is also used in Parkinson’s).
Regarding the block branches, there is a lot of alteration in the nerve circuits with GBS/CIDP and the block branch changes feedback, so you might get less expected results than someone with a normal normal conduction of nerve impulses.
WithHope -
AnonymousDecember 21, 2009 at 8:48 pm
It’s the ‘metabolic’ blood test that you want to see. That is the one that tells you what is swimming around in your bloodstream. What it does not tell you tho, is what all is actually being absorbed. The only way to find that out is a muscle ‘sample’ and, I don’t know about you? I think that IF I can get the right numbers up? And not the bad ones? Like B-6, I am doing all I can to help things along. The magnesium and vitamin D do help one ‘take in’ more of the calcium, its a sort of partnership to asorb better the vitamins you need to help nerves heal. And your bones too!
Correction – a Full panel isn’t what you want? It’s the ‘Complete metabolic panel’, or the ‘Comprehensive’ one! Web these names up and you should find reliable references to the tests, what they do and what they mean.
Because we might have asorbtion issues, and my first diagnostician suspected it…and it IS true? Take care in reading all info about any supplement you take and how to safely take them! Some meds don’t get along well with many meds and then the ‘when’ of the taking in all the pills can be complex! Even for what seem to be ‘simple’ problems! I do wish all this were simpler? But it’s not to be!
Go and fight a good battle! Hope always!
PS Once I started taking the calcium w/mag and D? Tremors took about 3 weeks to abate. It’s not an overnite process, but, it does help. AND…the mag keeps you from getting too ‘blocked up’ on the calcium alone. A good side effect for me at least. -
AnonymousDecember 21, 2009 at 10:39 pm
Thanks, everyone, for your input. I’ll follow up on it in more depth tomorrow.
What a day! Went to see my GP today, and he gave me a scrip for Lyrica, as well as one for Mirapex. Agreed that I’d try the Lyrica first, and if it didn’t help, I’d try the Mirapex. I guess Lyrica is more along the lines of Neurontin, and Mirapex is an anti-seizure med, similar to Requip. Listened intently to everything I had to say, but still is deferring to the neurologists and basically trying to help me get along until that appointment. The frustrating part was the tremors…I felt like Michael J Fox as I was sitting there…bobbing and weaving like I was in one of his political ads from the fall! It’s really scaring me, the way it’s getting worse so quickly. Guess Parkinson’s can’t be any worse than CIDP when you think about it…nobody would WANT to have either one…but neither is a pretty thought. I’ve still not found anywhere that indicates that myelin destruction is a component of Parkinson’s, so I probably have nothing to worry about. But still…you know how things start running around your mind.
Anyway, maybe the meds will work. He also gave me a scrip for prednisone, since that seemed to help the last time my arms got bad. Nothing like the dosages many of you are on, or have been on. Hope the 5th gets here soon!
Thanks again!
Elmo
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AnonymousDecember 22, 2009 at 9:49 am
Hey Elmo,
I had slight tremors prior to GBS (for whatever reason, tremors seem to run in my family). However, I could control it a bit by concentrating. Unfortunately, post GBS, I’m not able to control the tremors. At times, they’re much worse than others. My hands shake quite a bit, which has affected my writing (thank God my job requires a lot more typing than writing). If I’m upset about something or feeling more off balanced than usual, the shaking is very obvious.
I also tend to shake a bit when I’m resting and as I age, it has gotten a bit worse. My guy friend recently asked why I was shaking so much while he had his arm around my shoulder. I tried to play it off by saying; well, you know, I always tremble. He didn’t accept that answer and said if it continued, we were going to the doctor. I’m trying to stall a bit as I don’t want to deal with any potential side effects from medications and I have to be careful with pills as I had a left nephrectomy 5 years ago. I’m protecting my remaining kidney as much as possible. 🙂
I hope you receive relief soon.
Take care,
Tina
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AnonymousDecember 22, 2009 at 10:49 pm
[QUOTE=Elmo]I’m wondering how many of you with CIDP have a problem with constant tremors, shakiness, etc.?
The progression of whatever it is that they finally decide I have is causing intention tremors and a general “shakiness” that is quite unsettling. While much of it can’t be seen by people, I feel like (inside) I’m constantly shaking. When I lay down, within a few minutes I will actually have visible shaking and/or twitching. Mostly in my hands, arms, and trunk…not much in the legs. The only thing I get in my legs is when they are bent, similar to a golf stance or skiing stance, my legs will start shaking and get worse until I completely straighten my legs.
Does any of this sound familiar to anyone? Honestly, it’s scaring the hell out of me. My wife and I were talking the other night, and we both have had the thought of, “If it’s this bad and it’s still minor, how much worse is it going to get?!?!?”.
Yes, have tremor, shakiness,weakness, slow to start and severe pain. I think the tremor is due to weakness in the muscle. The bad doc in Boston kept telling me to stop shaking, as if I could control it. It’s almost like a smasm of sorts. So I think what you are feeling is normal for CIDP. Some days I feel like I am losing all control of my body.
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AnonymousDecember 23, 2009 at 6:00 pm
Well Elmo, I had the same thing happen to me when I was grocery shopping the other day – my left arm was shaking so bad that I had to use my right hand to hold it. I had also forgotten my walking stick, so I was limping as well. Needless to say, I couldn’t finish my shopping or finish my Christmas shopping either. I have also had bouts of shaking as well – last night it must have lasted for about half an hour. All of this has come about, I am sure because I went to a family reunion on Sunday and just overdid it – talking, the long drive to get there, baking something to take. All of these things when combined are just way too much for me physically with CIDP.
So I haven’t been able to do too much since. Oh well…
Kazza
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