Comparing Notes

    • Anonymous
      July 22, 2008 at 10:52 am

      I went to visit the Neuro yesterday and found out something I consider wierd. When he checked my patellar reflexes they were hyperactive. I haven’t had reflexes in 2 years! He is sending me for a brain CT as he wants a baseline of the central nervous system. Has anyone else had experience with this happening?

    • July 22, 2008 at 12:04 pm

      Hi Jan,
      A few weeks ago this topic was brought up. I would be under the impression reflexes coming back is a good thing. There was some confussion. I am still confused why some think it is bad. Why does your doc think it is something other than healing? I will be curious to see what answers we get!
      Dawn Kevies mom

    • Anonymous
      July 22, 2008 at 12:48 pm

      I just Googled “hyperactive reflexes”. Here is the link to the Wikipedia site explaining what they are:


      This is the text:


      From Wikipedia, the free encyclopedia

      Symptom/Sign: Hyperreflexia

      Hyperreflexia is defined as overactive or overresponsive reflexes. Examples of this can include twitching or spastic tendencies, which are indicative of upper motor neuron disease as well as the lessening or loss of control ordinarily exerted by higher brain centers of lower neural pathways (disinhibition).

      The most common cause of “hyper-reflexia” is spinal cord injury. Standard stimuli like the filling of the bladder can cause excessive responses from the nervous system, such causes are not known.

      But hyperreflexia can be developed via many other causes, including medication and stimulant side effects, electrolyte imbalance, and severe brain trauma.

      Treatment depends on diagnosing the specific pathology causing this symptom. Should it be caused by illicit or genuine use of medication/stimulants, then it may involve removing these drugs from their healthcare.

      From this definition, I’m guessing that the dr is concerned because you went from no reflexes to reflexes that are overly exaggerated.

      Hope that helps some,

    • Anonymous
      July 22, 2008 at 3:11 pm

      I have hyperactive reflexes and have had them since GBS 25 years ago. My dr. told me they are an indication of nerve damage. Not sure why they would be coming back for you after an absence of reflexes at all, but I would be thankful that he is looking into it for you so that he can get a clear picture of what’s going on.

      Good luck with the testing.

    • Anonymous
      July 22, 2008 at 3:39 pm

      Jan B-sounds like you have a good doc-any changes you have, he is addressing immediately. I have been areflexic since cidp dx 2000, but occasionally through the years I have a slight left patellar reflex-doc says that is ok for me, but that is all I have ever seen change. Good luck on your tesing.


    • Anonymous
      July 22, 2008 at 3:47 pm

      Jan, I started the thread a while back on “Brisk” or hyper reflexes. Had just been to a Neurologist at a Research Hosp. and it was the first time I’d heard the term. He said it was not typical of a past GBS diagnosis. I have since had an EMG/NCS and MRI of the C spine and brain. My next appointment is Aug. 6 so I will be interested to hear his opinion.
      Let me know what you find out. We’ll compare notes.

    • Anonymous
      July 22, 2008 at 6:04 pm


      It just sounds like the doctor wants to have a close look at things. If you have had good reflex all your life and they decrease or go away, the reflex is used as a cross road in diagnostics. Being that the patellar reflex had returned and is over, more that normal, certainly this warrants checking it out again. Any change is an indication of activity, either for the better or not.
      Reflex changes assist the neuro in dx or ruling out others. If someone has hyperactive reflex all their life, then that is normal for them. I was asked how my reflex was up until I knew I had a problem. Mine were normal growing up. After the CIDP hit or over the last few years they are all faint. during recent recovery they have improved a bit now that I am aware of it.

    • Anonymous
      July 22, 2008 at 6:49 pm

      As others have said, reflexes are a good sign of where the problem is in the body. Reflexes that are lower (like most of the time in GBS) are a sign of lower neuron problem–with problems from the nerves that connect spinal cord and body. Reflexes that are over-active are a sign of a problem in upper neurons that connect spinal cord and brain.

      The other important fact to know is what is happening in the rest of the body. If reflexes are increased everywhere in you, this might be an atypical recovery phenomenon. If they are only increased in the legs–say knees and ankles–this raises a concern about the lower half of the spinal cord.

      I have always all over had really, really brisk reflexes. In classes for my clinicals decades ago, everyone wanted to test my reflexes because you get a really impressive kick out if one hits my patella anywhere close to the right place!!!! I did not lose the reflexes with GBS as you are “supposed” to do. My neurologist thinks the brisk reflexes are normal for me (since they have been present for decades and are brisk all over) and said because they are so brisk, they might be decreased and no one would really know it. I went for a second opinion not long ago and this neurologist said my problem has to be in my brain and/or spinal cord and that it could not be GBS because my reflexes were too good. Of course, they did not explain how I had sudden onset of progressive motor and sensory neuropathy with paresthesias sixteen months ago and still walk quite abnormally and have sensory cranial nerve changes. There is not a whole lot that gives all that except GBS/CIDP.

      There are people who get diagnosed with GBS and then it is later found out that the source of the problem is in the CNS such as due to multiple sclerosis. My guess is that your doctor wants to make sure that your brain is okay in part because of this. It is important to note that many people have said on this site that one or two little changes (plaques) on an MRI do not mean that one has MS–they can be due to other problems including migraines. It also is my impression that doctors like to and should rethink processes as time goes on. If it were MS, different treatment approaches might help more. i do not say about MS to scare you, but to give you facts to help.

      WithHope for a cure of these diseases

    • Anonymous
      July 23, 2008 at 9:11 am

      Thanks for the responses. You have confirmed what I was thinking. My Dr did tell me that the “hyper” reflexes could be an indication of central nervous system issues rather than peripheral and hence the brain MRI. He told me not to get nervous yet. This was more of a baseline than thinking there is a big issue. I am planning to just take one step at a time….otherwise I trip! :p I will keep you posted when I find out any more info.

    • Anonymous
      July 23, 2008 at 12:17 pm

      WithHope, thanks for the explanation. It was much clearer than when the Neuro explained the whole hyper reflex thing. Now I realize what he was saying, it was pretty much your explaination only in clinical terms.

      Again, what a great place to come for information.

    • Anonymous
      July 23, 2008 at 9:09 pm

      I just wanted to throw something in here…………..It seems that there is some thinking lately in a number of ‘specialists’ (I honestly cant remember what study or article I was reading as it was a number of months ago) that believe that in some cases GBS and CIDP does include the the CNS and not only the PNS. I have spoken to a number of patients who do show hyeractive reflexes after years of none at all.

    • Anonymous
      July 24, 2008 at 12:06 pm

      Question?? Is the heart controlled by the central nervous system? Many of us have had irregularities. I have never figured out how medicine has divided the body into separate entities ~ as in “this cannot affect that”. It’s all under the same body of skin!!

    • Anonymous
      July 24, 2008 at 12:54 pm

      [QUOTE=Judi Z]Question?? Is the heart controlled by the central nervous system? [/QUOTE]
      No, it is regulated by the [B][I] autonomic nervous system [/I]([/B]ANS) which controls heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, urination, and sexual arousal. Although the autonomic nervous system is [U]part of the peripheral nervous system[/U] as opposed to the central one, these activities are generally performed without conscious control or sensation.
      I had to look it up again because I get confused. I wonder to what extent GBS or CIDP can affect the ANS. We know that some GBS patients had to be on a respirator meaning part of the ANS was involved – in my opinion.

    • Anonymous
      July 24, 2008 at 1:56 pm

      [SIZE=5]HELP! [/SIZE]
      [SIZE=5] I’m Dx’d CIDP a year now, Prendisone worked for a time it reducing symptoms but has lost it’s charm. 10 doses of IVIG infusion had a slight negative effect. [/SIZE]
      [SIZE=5] Now, Johns Hopkins Specialict (on the Foundation’s Board) is recommending Cellcept- but my local Neuro is saying he doesn’t “prefer it” and is warning me about “PML”. [/SIZE]
      [SIZE=5] I tried for hours, yesterday to get the # of non-aids related PML Deaths. CDC, NIH, NORD, none could give me #’s to evaluate the risk.[/SIZE]
      [SIZE=5] Thing is, though I’m now Disabled, I can almost function for an hour or two (no consistantly) In fact, the Drs say I’m “not so bad” or “strength is good”. From my viewpoint, I’ve given up my business, will be downsizing my home, can barely carry my 7 yr old daughter, am getting worse AND I”M A FORMER FULLBACK![/SIZE]
      [SIZE=5] Just everyone’s opinion; am I crazy for pursuing treatment so aggressively when “I’m not that bad?” Does anyone know how many non-aids related deaths are attributed to PML? (So I can guage my risks?)[/SIZE]
      [SIZE=5] Meanwhile, I apologize for being SO dramatic- I realize many of you may NOT ne “good” for an hour or two, at all. But I’m deteriating, here and just vtrying to reverse the trend?[/SIZE]
      [SIZE=5]Peace and Hope to all;-)[/SIZE]

    • July 24, 2008 at 2:45 pm

      Many on this site have been on cellcept without problems. I have taken it for over 4 years without problems. Its a risk reward assessment for many of these medications as most list some pretty heavy side effects. Steriods have lots of bad potentials as does cytoxin and rituxan. I decided to try Tysabri, an MS drug that the FDA took off the market because of PML deaths reported. Its back on the approved list, but as other treatements have lost their effectiveness, I decide, for me, the risk is worth the potential reward. Do your research, weigh the potential gains against the risk, then decide what is best for you. Good luck in your journey.

    • Anonymous
      July 24, 2008 at 2:49 pm

      Pardon an ignorant finnlander, but what is pml? Heart thing? As far as strength, I know what you mean.. I have relative strength, but no endurance, and fatigue easy now.. Stuff I did last year, I can’t think of doing now, and probably never will again.. Guess I’m starting to be a realist.. Still trying to be an optomist, as I’ve got kids of my own.. I hope they get things under control for you…P.S.. You should probably start a thread concerning this Erik…Like Fred said..Steroids (Prednisone) has its problems as welll….

    • July 24, 2008 at 2:57 pm

      Forgot to ask. If the IVIG is not working has your doc suggested plasma exchange? IVIG did not help me initially so they switched to PE with IV Predinsone at the end of the procedure and this has kept me going for 12 years. The PE is also done without the steriods with good results in many cases and there is minimal risk, if any, with PE’s. If your veins are good they can do them without a port. They can even use an angio cath in the wrist for the return line. Something to consider if your doc hasn’t already suggested it. I’ve had nearly 400 PE’s in the past 12 years, so they must be pretty safe!

    • July 25, 2008 at 10:52 am

      PML is Progressive Multifocal Leukoencephalopathy, a rare infection of the brain. Most often causes severe disability or death. It’s bad stuff because there is no treatment or cure for it. The risk factor increases when the body is on medications that weaken the imune system. This is one of the potential side effects of the drug I am now on for my CIDP, Tysabri.

    • Anonymous
      July 25, 2008 at 1:59 pm

      [QUOTE=norb]No, it is regulated by the [B][I] autonomic nervous system [/I]([/B]ANS) which controls heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, urination, and sexual arousal. Although the autonomic nervous system is [U]part of the peripheral nervous system[/U] as opposed to the central one, these activities are generally performed without conscious control or sensation.
      I had to look it up again because I get confused. I wonder to what extent GBS or CIDP can affect the ANS. We know that some GBS patients had to be on a respirator meaning part of the ANS was involved – in my opinion.[/QUOTE]

      Norb – I definately had autonomic nervous system involvement and still do:
      my respirations are weak and slow, my heart rate has increased, my blood pressure has increased and is more erratic, my digestion has slowed, I don’t salivate much, I don’t make tears, I don’t sweat much, my pupils are frequently uneven and the right one rarely constricts in light, my kidneys are erratic as is the sensation in my bladder and I can’t even remember what sexual arousal is. My Hopkins neuro says it’s not all that rare actually but usually isn’t as severe and takes longer to heal. I seem to remember something about IgA being responsible for protecting autonomic and cranial nerves… I’ll have to look that up… and most IVIg treatments specifically DON’T have IgA in them.

    • Anonymous
      July 25, 2008 at 3:52 pm

      the PML thing does sound a bit scary. For those of you taking the cellcept,
      do you undergo any monitoring like Blood tests or anything to detect how low your system goes?? I would imagine if your system changes on its own, a lower dose would be required. If not being prone to the PML would increase??
      How does this work. I am very interested in knowing the rates of problems on this drug and how many who take it for CIDP develop the PML. thanks

    • Anonymous
      July 25, 2008 at 4:33 pm

      😀 Boy would I love to have my reflexes again. Have not had them in a longgggg time. Actually the only reflexes I do get when I get them because my feet are so dead is when I stump my toe on something stupid because I have terrible balance problems. When I get out of bed at night I’m like a drunk walking through the house. Not drugged up or drunk though. Just my body and legs are numb and dead feeling, so I have to work other parts that do work. But let me stump a toe! 😀 Reflexes come back to life quick fast and easy;)

    • Anonymous
      July 27, 2008 at 11:07 pm

      [SIZE=5][COLOR=purple], honest. PML is/WAS very rare- the only stat I found was number of deaths “1976-1994” in the US, attributed to, less than 4000. But the study added that he increase has been substabtial “w the spread of AIDS and use iof anti-rejection meds.”[/COLOR][/SIZE]
      [SIZE=5][COLOR=#800080] As Fred says (thanks Fred) “you gotta look at the risk/reward ratio.” Which was the reason for my question- to evaluate the odds, so to speak.[/COLOR][/SIZE]
      [SIZE=5][COLOR=#800080] PML involves a permutation of the “JC Virus”, something many of us carry harmlessly (70% of adult males, for ex) for Life. 5% of Aids patients, some unknown % of Chemo and Anti-Rejection medicated folks the JC evolves to PML. A virus that attacks the “white matter” myelin , of the BRAIN, usually resuklting in death in 3-6 months. BUT- as I said, I THINK it’s still very rare? Just looking for a Stat on Non-AIDS PML Deaths reprted SINCE ’94 or more recently, anyway. A GAMBLER LIKES TO THINK HE KNOWS THE ODDS![/COLOR][/SIZE]
      [SIZE=5][COLOR=#800080] Oh, Fred, I’ve asked, repeatedly, about Plasma exch- all 3 Neuro’s say “recerved for more urgent cases, you are “not so bad” etc.” Just Tuesday, I asked my Dr if he would think his case “not so bad” or “non-emergent” if he was giving up a $50K net “Practice” (my business) for a 25% SSDI check, w no real hopec of getting it back. I got a blank stare. Bless the Practitioners, but, they don’t always see things in “Real World” do they.[/COLOR][/SIZE]
      [SIZE=5][COLOR=#800080] ANYWAY, sorry for the “War n Peace”, if anyone finds the non-aids toll on PML, I can call my bookie![/COLOR][/SIZE]
      [SIZE=5][COLOR=#800080]You cain’t have a Light[/COLOR][/SIZE]
      [SIZE=5][COLOR=#800080]Without a “dark” to Stick it in” (“Pug” ,[/COLOR][/SIZE][SIZE=5][COLOR=#800080]my Father, RIP 1967)[/COLOR][/SIZE]
      [SIZE=5][COLOR=#800080] [/COLOR][/SIZE]

    • July 28, 2008 at 7:40 pm

      Hi Eric,

      My neuro has never mentioned PML with cellcept, and he has quite a few MS and CIDP patients on this drug. I have taken it for a total of about 5 years since my dx in 96. My dosage has been 2000 mg/day. When we discussed the MS drug Tysabri, he told me about the FDA pulling it off the market in 2006(?) due to 3 deaths from PML. The FDA subsequently found that the deaths were due to the use of two Biogen MS drugs together, Tysabri and Avonex. My doc’s practice has over 600 patiens on this(including trial studies) and has told me there have been no reported problems, so I am taking the risk, and I am a very, very conservative person, but with a “half full attitude.”
      Cellcept has been around a long time so any deaths reported from use of this drug should be available. Your doctor should be able to tell you where to find out, or better yet, should be able to tell you. Primary use is in organ transplant patients to help prevent rejection of the new organ.
      As for the PE, my neuro also insisted on the IVIG and steroids as his front line treatment, but after about three months, he agreed it was not working, so we started PE and have continued it off and on since early 97. It has clearly been my life line. Everyone responds differently to the various treatments, so you need a doctor that will work with you to try other protocals until you find the one that works for you. Good luck and keep pluging away at him.

    • Anonymous
      July 28, 2008 at 11:09 pm


      Good thoughtsd, all, and, yes, I’m a “worry Wart” I think of my kids, more. My son lives with me, my 7 year old daughter, chiold of a TV addict spendthrift, is with me 40% of the time- both, I feel might be kinda lost if I were to “vacate” permanently.

      The risks on PML are problably nextr to non-existent. The relationship to CellCept is, only, a recent (past 10 years) observation, accirding to sites viewed, by me. My neuro is set against PE, the Spec at JH, the same, stating i’m “not so bad” wonder if they were the ones giving up their business and “stumbling in my shoes” if they would feel the same?
      My worst compaint with these Drs is they WON’T answer simple questions, either too busy, too worried of lawsuitsd or just thinking I need not know?

      I probably wuill go along w Cellcept, it would just be nice to know. Good luck w yout Journey!


    • July 31, 2008 at 1:59 pm

      If JH is dead set against plasma exchange(thought I can’t imagine why)
      you could consider contacting Dr. Carol Koski at the University of Maryland medical center. She is on the GBS/CIDP medical advisory board. I saw her for a second opinion a number of years ago and she agreed with my CIDP dx. I found her to be very well informed and interested in my situation even though I was not a regular patient. She came very highly recommed to me from people I knew in the medical community,(my brother is a doctor in PA) so I took the trip from Georgia to see her. Perhaps a call to her office to see if she uses PE as well as IVIG and other medications may be of benefit. It would be hard for me not to get another opinion if my treating physician refused to try a different treatment if the one he is using was not working for me. I am curious, if you have qualified for SSDI, how in the world can a doctor not consider your case “bad enough? It is extremely difficult to get a claim for CIDP approved with SS.
      As for treatment flexibility, I went from IVIG, to PE, to steroids, imuran, avonex, cytoxin, and rituxan along the way. The thing that worked best for me has been PE with IV solumedrol. Over the past few months, I have relapsed, so my doc is trying an entirely different approach now. Last tuesday I had a PE with solumedrol, then 7 days later I had an Infusion of Tysabri(MS drug), then yesterday IVIG, so 4 medications in 7 days. It is his intent to try this series for 3 months to see what happens. If I see any improvement, I will post a thread so others can talk to their doctors about if if they are not making any progress with their current treatments. As we all know, what works for one does not necessarily work for someone else.
      Just a thought. Hang in there.

    • Anonymous
      August 2, 2008 at 10:27 pm

      Are you OK? I think, maybe, I’ve just not accepted I’m “damaged goodfs” and exp0ect too much?

      I’m a “doer” and can’t “do”. When I feel OK I overdo and set myself back?n I’m starting to thingI might just lie in bed a week and see if I regenerate? But, lastr time I just “lauid there” was 6 months of traction!

      Anyway, God BeWith You in your Journey, I’ve just started mine, and, I guess, I’;m expecting to “fix” this, like you would an aitomobile or water heater or leaky roof! (Former Mechanic/Engineer) And thus just doesn’t “fix”! As I watch myself age and crumble rapidly, though, I can’t help but think tome is of the essence? Yet I’m told to “just sit and wait! Grr!

      Hope it works out, how does that combination feel? IvIg made me fel LOUSY! and didn;t help the symptoms. Actually the numbness w 60- mg of prendosone is fairly good in my legs and arms,it is my face that has gone numb recently and the weaknes and fastigue are signficant and worse astime goes, As I said I keep trying to DO stuff, I think ‘m killing any healing- but I’m a single parent homeowneer, etc. I dunno, but, hey, best of luck!


    • August 6, 2008 at 12:39 pm

      Hi Eric,
      It has been an interesting and wild ride over the years. Some good, some pretty rotten, but it is what it is and I enjoy the good and try not to worry about the bad as it doesn’t help. Being an x scholarship football player, the initial adjustments were extremely difficult, but with time I found life much better for me and everyone around me to be much better if I just play the hand as dealt and look for the good or up turns when they come. I have also learned moderation when the good times show up, and am careful not to try to do to much at one time, because when I do, I pay for it over the next several days.

      I am afraid the new treatment protacol I have been trying may end this month as I was just notified by my neuro that Biogen has reported 2 new PML cases in users of Tysabri. Needless to say, I am very disappointed because I was holding out hope that “this may be the one” for me, despite no signs of change after the first 4 infusions. Guess it wasn’t to be, so I’ll go back to PE and solumedrol. I will try to get my doc to continue the IVIG with the PE for the next two months to see if that combination helps improve my leg strength and balance. Just another bump in the road, so we”ll keep on trying.
      Hope this finds you better and improving. Never give up, because you never know when something good will happen.