Long post with a few quick questions at the end.
AnonymousNovember 18, 2006 at 2:32 pm
About 8 weeks ago I was walking home from work and my right foot started feeling like it was going to sleep.
Within the first week this had progressed to a complete foot drop in the right foot and numbness up to the calf muscle.
While the numbness was spreading up the leg, a tingling sensation went ahead of it which eventually stopped in my right buttock and went away. However the foot drop and numbness to the calf remained.
My GP was worried that it was GBS but wanted to rule out a pinched nerve so scheduled me for a CT scan of the spine.
The CT scan showed that I did have a prolapsed disc in my lower back.
So, my GP breathed a sigh of relief and referred me to a neurosurgeon to see if it were operable.
After an MRI of the spine and head, the neurosurgeon said (and was kind enough to explain and show me on the film) that even thought the disc was prolapsed, it wasn’t touching the nerve.
He then scheduled a CT assisted cortisone injection, just in case it was a sensitive nerve being affected by any inflammation. This had no affect on my symptoms and he then referred me to a colleague of his (several different neuro-type-people in this office complex) that was a neurologist.
At this point it was 5-6 weeks from the initial “foot falling asleep” feeling on my way home from work.
During this time the numbness had begun showing up in my left foot. Both my arms from the hands to the elbows began experiencing a feeling like I was touching everything through a glove or as if they had novacaine in them.
My face started feeling ‘tight’ ( I describe it as how your face feels after it’s been sunburned).
During this period I also began having night sweats about 4-5 nights out of the week. To the point where I would wake up soaking wet (smells like a sickly sweat as well, not clean sweat) from head to toe.
After the neurologist examined me, he booked me into the hospital for 4 days.
I had an NCS/EMG on the right foot and left arm. The result was “left median neuropathy secondary to carpal tunnel syndrome, and conduction block at the level of the right knee.”
That ‘carpal tunnel’ part annoys me because I’ve been typing on a computer for the last 9 yrs and have never had any problems whatsoever with my hands/wrists/arms until after this all started. Strikes me as odd that it would conveniently start now.
An ultrasound of the right knee showed no blockage, no visible signs of restrictions, damage or discoloration of the nerve.
They commented that my red blood count was slightly elevated at 455 but otherwise the bloodtests were fine.
A lumbar puncture resulted in clear fluid with a protein level of 51.
A CT scan of the chest and abdomen showed a 11x14mm right hilar node and a 22x13mm hyperdensity in the right kidney posteriorly which was believed to likely be a cyst.
I was then discharged with a diagnosis of ‘Sensorimotor peripheral neuropathy of unclear aetiology’.
The following week I then had another MRI of the head and spine and a PET scan, and the results from both were normal.
Up to this point I had experienced no pain whatsoever in any of the affected areas. The ‘numb/tight’ feeling would come and go from both of my arms up to the elbow and my left foot and calf (right foot and calf still having foot drop and constant numbness) but throughout, the doctors have stated that my reflexes are still brisk.
The muscles in my right calf have wasted down to about half the size to that of my left calf.
Last weekend the ‘numb/tight’ feeling began moving into both my bicep/shoulder regions in both arms for the first time and the tightness crept into both my legs up past the knees.These sensations, while coming and going as they pleased, had otherwise previously remained in the same spots.
The frequency of fascilations (they occur everywhere) also had a marked increase.
I began IvIg treatments this week (3 days of 30gms & 1 day of 60gms) which I absolutely loathed. Just feels gross to me for some reason, not to mention giving me headaches (the last dose was the 60gm one and I had a headache for 3 days) and is incredibly boring. I don’t know how the other people I’ve read on this board endure them month after month.
I ended up with an infection from the IV tube (noticed the lil red lines traveling up my arm) but the antibiotics I got on Friday seem to have put a dent in it.
When I called the neurology dept. at the hospital on Friday (I didn’t know if antibiotics would mess up the IvIg treatment I’d just had) and I was told that they suspect that it’s a variant of CIDP and my response to the IvIg would determine if that was correct (and they’re scheduling another one in a few weeks..yuck)
That was the first time they had even partially hinted at what they thought it could be.
So I immediately began reading what I could on CIDP which eventually brought me to here.
I think writing down all this was a bit of therapy for me.
But if any of you have read through my dribble above, I have a few questions.
I’ve read here and there and on here that an elevated red blood count isn’t normally associated with CIDP.
Is this right (mine were slightly elevated)?
Several websites state that there is little or no reflexes with CIDP.
Is this right (mine have remained brisk throughout)?
I apologise for any grammar mistakes, and the bulk of the post.
AnonymousNovember 18, 2006 at 5:37 pm
To answer your questions…I just don’t know. CIDP seems to affect people differently & what happens to 1 person may not ever happen in another. It’s a strange disease that way. I’m sure someone else will have more answers for you.
I was writing to question your IVIG schedule. Why are you getting 60 grams in 1 day? That seems like an awful lot to get in 1 sitting. The normal loading dose is IVIG for 5 consecutive days at the same dose. Then you go on a maintenance plan that is tailored to the individual person.
Make sure you drink LOTS of water. I’m talking enough water that you feel like you are floating & ready to barf. My daughter used to get the headache & feel like she had the flu after an infusion until we started doing that. It’s VERY important to stay well hydrated.
Also, the infection was probably from a nurse starting the IV and not using sterile technique. I’ve never heard of IVIG starting an infection. It comes from a germ from somewhere.
My daughter gets home care for her infusions so she normally watches TV, colors or does puzzles. Are there any hobbies that you can do while you sit? Reading, puzzle books, crocheting, etc? You don’t just have to sit there & not move.
Good luck to you. I know how frustrating it is to not have any answers.
AnonymousNovember 18, 2006 at 8:16 pm
Welcome to the forum. I am glad you found us.
Numbness in the extremities and lack of or reduced reflexes in knees and elbows is one of several indicators that [U]can[/U] mean – among other causes – CIDP. Other possible symptoms are an elevated protein count in the spinal fluid and conduction irregularities in the extremities as shown by an EMG. Usually, it is a process of elimination before a diagnosis of CIDP can be made. I have not heard of red blood counts playing a role -but then I am not a doctor.
To use the effectiveness of IVIG as an indicator does not make sense to me. Not every CIDP patient derives benefits from the infusion.
BTW, [B]Emily’s mom[/B], I am getting 65 grams of Gamunex per day. The amount depends on body weight. I weigh 215 lbs.
AnonymousNovember 18, 2006 at 8:33 pm
Yeah I know it goes by body weight but I was perplexed as to why there would be 3 days at 30 grams and then 1 day at 60 grams. That just seemed odd to me. I guess I just didn’t explain it well. (Emily was jumping up & down next to me trying to get my attention while I was posting & I guess it just didn’t come out right, LOL)
Just questioning if this is normal because I’d never heard of it before.
AnonymousNovember 18, 2006 at 9:55 pm
Blood count question
My husband’s platelet count was elevated right from the start way before he’s been dx with CIDP started slowly in Nov 2005 and in march 2006 were up to 1200 . He had a bone marrow biopsy but didn’t show any abnormalities and then after 7 session of plasma exchange( done as additional treatment for CIDP, not for elevated platelets) the count dropped down to 560, now he’s around there, 500-600 even though he’s on medication for this( clopidogrel 75mg).Nobody knows if high platelets can be related to CIDP but because they couldn’t find a reason in my husband case I believe there is a connection somehow.
He’s without reflexes since 2 months after the firsts symptoms appeared.
IVIG? Did not worked for him at all.
Anyway, you are in the right place to ”shout and scream ”of frustration and most of all to ask question, people around here are more then welcome to share their experiences, give you a ”shoulder to cry” and support.
Welcome to the family!
”Dandana, no, raised platelets does not cause sweats. Red cells carry oxygen and are increased physiologically in those accustomed to living at very high altitudes and in a rare marrow disease called Polycythaemia Rubra Vera or Osler Vaquez disease. (don’t I love medical terminology) DocDavid”
This is an answer given to me about the high platelets from Doc David which I believe is a doctor and everybody here trust he’s
medical knowledge. I forgot to tell you that my husband is still having the kind of sweats you are talking about but again, nobody can really explain them either
AnonymousNovember 19, 2006 at 3:47 pm
Thank you all very much for your responses, it’s good to have someplace to talk to others about this.
The neurologist who scheduled it told me it was 3 days of a normal dose of 30gms and 1 day of 60gms. One of the nurses then told me that the reason for the 60gm dose was because of scheduling issues and that they wouldn’t have been able to get me in for 5 days so they went with 5 doses over 4 days instead.
When I spoke to the neurologist again on Friday regarding my query as to whether antibiotics would mess with the IvIg he said that the next set of infusions would be 2 days with 60gms each day (yuck).
Thank you very much for the tip about hydrating. I was never told that. In fact, when I asked general questions about it, neither the neurologist or the nurses could even tell me what the IvIg even was supposed to do, let alone that hydrating was a good idea.
The only worry is that I’m having it done in a hospital and when I had to excuse myself last week to go to the loo, they unhooked the drip. When they hooked it back up, the iv had slipped out a bit and was leaking so they had to take off the clear plastic cover and slide it back in. It was after that when it became sore and then infected so if I have to make multiple trips to the loo I don’t want it sliding out when they hook it back up again.
But I’m going to give it a try anyway, would be worth even another infection.
Thank you 🙂
It hasn’t helped yet, but the neurologist said he wasn’t really expecting it to make any sudden changes. I thought it was odd that they were using it in the form of a process of elimination as well. Especially when they could tell me nothing about it. Have you heard of any variants of CIDP that still leave your reflexes intact?
So your husband’s night sweats haven’t gone away at all? Have you noticed if it smells sickly rather than normal sweating? Thank you very much for the information on the blood count, it’s something I’ve been wondering about since they mentioned it.
Again thank you all very much for your responses.
AnonymousNovember 19, 2006 at 9:08 pm
the sweats didn’t go away, they usually come at night times and they are having the same sickly smell (how could one ignore it ), anyway, in case you find out something about this sweats please , please let me know.( I haven’t find anyone else with the same symptoms).Thanks in advance for this.
AnonymousNovember 19, 2006 at 9:15 pm
You should also be premedicated with Tylenol & Benadryl. That will help with with any potential reactions.
I believe the reason why you got an infection was because when an IV comes out they are supposed to start over with a new one. If they pull it out (even a litte) they are exposing it to germs that are on your skin. Then when they put it back in those germs get direct access to you.
I am a HUGE germaphobe with things like that. My daughter had a Broviac catheder in her chest to get her IVIG & we had a replacement nurse twice & after the 2nd visit Emily had an infection which could have been life threatening. We were lucky that it was isolated to her catheder & hadn’t entered her blood stream. We later realized that the replacement nurse wasn’t as familiar with the catheder as we had thought.
I make sure that all nurses that come near her wash their hands immediately before touching her & put on gloves. I’ve asked some nurses to double glove even. Then I make sure that they use 100% sterile technique. I am a pain in the butt but it’s better than dealing with an infection.
When Emi had her infection we were told that she could get IVIG and the antibiotic at the same time but we were asked to hold off on her treatments until she was done with the med. The dr just wanted to make sure that the AB was the only thing in her body so it could work well on the infection.
I read an article awhile ago on ScienceDaily.com (I think that’s the website) that explained how IVIG worked. I don’t have the link but I’m sure you could Google it if you need to.
Also do they have an IV stand with wheels that is available to you? Our hospital prefers to leave the IV alone because the more times they mess with it the more chance there is to get an infection. Even if they don’t have an IV stand with wheels maybe you could carry the IV bag with you & hang it on a hook in the bathroom (or loo, as you call it).
I hope that helps.
AnonymousNovember 19, 2006 at 9:46 pm
I’m sorry, I almost hate throwing this in the mix 😮 , But besides GBS, which can take up to 4 weeks to progress, there is something called SIDP where the progression is similar to GBS and can take 8 weeks to progress. The reason Im telling you about the SIDP is because you indicated that this all started about 8 weeks ago and it seems to have progressed beyond the 4 weeks, but may seem to be too quick a progression for CIDP – I could be VERY wrong on that account though.
[I]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less then 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).[/I]
[I]….. Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIG or PE.This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.[/I]
They say its uncommon, so I’m not sure how many people are even diagnosed or incorrectly diagnosed with it. Once again, Im sorry if I have confused you even more, its just something to take into consideration.[/I]
AnonymousNovember 22, 2006 at 3:43 pm
I’m sorry for the late response, I’ve been pretty busy at work lately and had forgotten to respond.
Have the doctors ever given any theories at all as to your husband’s night sweats?
I’m going to press them for “a best guess” when I speak to them next and I’ll let you know what they say.
I’m going to be much more careful and aware when I go back in for my next ivig. The neurolgy registrar from the hospital rang me on Monday and they’ve scheduled me for another lot on Dec 19th and 20th. He said it will be the same amount as I previously had (3x30gms, 1x60gms), but they’re going to concentrate it and deliver it over a 2 day period. Which means I have to stay overnight. 😡 I hate hospitals.
I had a look through my emails at work and the day I first started having the “falling asleep” feeling in my foot was Sept. 11. Which makes it 80 days now, does this change where I slot in at all? I had a bit of a read on SIDP (thank you) and I did find some very useful information I hadn’t read before.
On the upside, I think the ivig (the doctors/nurses keep calling it intragam here in australia, but I think that may be a brand name) is starting to work. My foot drop seems to be getting better already, it’s still numb as, but I can not only lift it to the horizontal level but also about 3 degrees higher.
The downside is that everything else seems to be getting worse. I woke up last night and my left shoulder was completely numb and the lil pains and spasms seem to be increasing in strength and frequency.
But I’m going to look on the bright side and try going without the afo today. 😀 A bit nervous about that because I sprained my ankle 17 times in the first 5 weeks before I got the afo (none since then).
AnonymousNovember 22, 2006 at 4:10 pm
Re: nite sweats ~ I suffered for years with this residual. Once again, the body’s messaging system has been assulted and sends “crazy making” signals 😮 I am 11 yrs. post and much better altho I still have “hot flashes” when over tired (no, not menopausal type). I believe that if we, as the GBS/CIDP family, made a “list” of residuals we’d be shocked at the variations.
I believe that the docs are just to quick to say “that can’t be related to . . .”
AnonymousNovember 22, 2006 at 8:50 pm
well in my husband case , docs couldn’t explain it at all, they said it might have something to do with the metabolism and they referred him to a specialist, we are still waiting for that appointment.
It might be like Judi said-residual-but the smell of the sweats this is what is puzzling us, can be probably the medication he’s on , but the urine doesn’t have any other smell than urine- does this make any sense?
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