Scary experience

    • Anonymous
      May 6, 2006 at 11:32 pm

      I don’t panick very easily but this must be one of the weirdest diseases around.

      Last night all of the sudden the same scary sensations came back I was having while on the steroid prednisone a few weeks ago: A wave of electrical shock like sensations came over me starting in my legs and travelling all the way up to my chest making me almost feel like choking. I lost control over my leg muscles and could hardly walk. Fortunately, this time I had my “Ferrari” rollator to give me support. I knew it wasn’t a heart attack. But fearing that I had to call an ambulance and being alone in the house for a few days, I wrote down my wife’s phone number in Connecticut on a piece of paper for the medics to find. Feelings like falling asleep moved up my arms for a while longer while sitting in our Lazy-Boy recliner. I finally went to bed at about 11 p.m. still feeling very anxious and fearing I was going to die. I tried to feel my pulse because I thought my heart had stopped. I couldn’t feel anything on my wrists or neck because my finger tips are numb. I lay awake until about 1:30 a.m. listening to relaxing sounds on my iPod. I finally must have gone to sleep because at about 3 a.m. I woke up to pee.

      I am doing OK today, talked to my wife on the phone and my daughter who just arrived in Seattle with Sydney, our granddaughter, to visit friends and to rejoin her husband. He just came back from a three week kayaking trip along the Alaska coast with two friends.

      I wonder if any of you ever had a scary experience like that. It was fairly new to me.

    • Anonymous
      May 7, 2006 at 4:54 am

      Norbert I can’t help you but I am sorry you had to experience that. I am wishing that you find some answers. Take care


    • Anonymous
      May 7, 2006 at 7:19 am

      Dear Norb,

      Yes, that is scary. Have you thought about what had been happening just proir to the ‘attack’? For example, were you just sitting quietly watching TV, had you been doing some exercises, were you feeling concerned about being alone or something else, had you eaten, had you had an alcoholic drink? Is there anything that may have triggered the attack?

      Re pulse finding: If your heart stops I think you won’t be able to feel for a pulse. As long as you are still thinking your heart has not stopped.

      Do you have a sedative or relaxant medicine to take at times such as this? You are having quite a bit of stress and stress is definitely not good for GBS/CIDP – or any other disease for that matter.

      Do you still think your statin drug is absolutely necessary?

      Love, Val

    • Anonymous
      May 7, 2006 at 7:51 am

      How scary this must have been for you… Is it possible that an undo amount of stress could have contributed to this? I have had anxiety disorder for over 30 years, but other than the choking, this does not sound like a panic attack. I have had many times since coming down with CIDP that I have felt I was having a heart attack, but have found it is just muscle pains in the chest area, as well as my neck, shoulders & upper arms. For this I will take half a vicadin. I don’t get this as much as I did a few years ago.

      I have a question for you about your comment on statin drugs. I had a complete blood profile done in Feb & all of my numbers were good except my cholesterol level, it is through the roof. But my doctor is hesitant to put me on a statin drug. I have been trying to lower it by eating a very low-fat diet. What is it I should know about this class of drugs?
      Thanks, Pam

    • Anonymous
      May 7, 2006 at 10:01 am

      Thanks for your replies. I don’t think I was stressed that day and I was not doing anything different. I am completely in the dark what could have triggered it. Actually, yesterday late afternoon I was quite stressed getting rocks upstairs my wife collected years ago at the northshore in MN . First the handle of the tub broke downstairs when I tried to lift it onto an office chair and I fell on my butt. No harm done. I pushed it instead to the door and moved half the rocks into another tub. Then I moved it upstairs step by step and then outside where I spread them on a bed. I had planted 3 currant bushes there a few weeks ago. After I got the rest of the rocks upstairs, I was so exhausted I had to sit down for a long time. Nothing happened, the symptoms didn’t come back. I guess this is not the kind of stress you were talking about.
      Val, yes, I am still on statins, 20mg of Zocor. I have coronary artery disease, had a heart bypass 8 years ago. Some arteries which could not be bypassed are severely clogged. The cardiologist told me then I had to stay on statins if I wanted to live. I tried once before to control my cholesterol through diet alone but that did not work. I am still being careful with what I eat. We talked about this before, there is no solid proof that there is a connection between statins and neuropathy, just anectodal reports. A couple of years ago I tried to test this myself and quit the Zocor. My neuropathy continued to get worse. I started Zocor again but at half the dosage and added Zetia which is not a statin and works differently. I am now taking a new combination drug, Vytorin 10/20.

    • Anonymous
      May 7, 2006 at 10:15 am


      From your post, it sounds like you were home alone. That must have made things even worse not having your wife there! I had a relatively smililar incident in April 2005, but my husband was here, and when I couldnt breath, I woke my husband up (3:30am) shouting “call 911, call 911”. I was under a lot of stress the day before and had been on my feet for 15 hours doing physical work that day. I wouldnt be surprised if all that strain with the rocks had something to do with it – such a strange disease. Thinking of you.

    • Anonymous
      May 7, 2006 at 10:42 am

      Hi Norb,
      I think many of us will agree that stress does ALOT to us, I know it does to me because I live with stress and can’t always control it. I had a scary thing happen to me, which I call “my dead arm” happened only once and never came back. I had just gone to bed and I realized something was wrong with my arm, it felt “dead”. I raised the effected arm with my other one and it dropped down like a dead lifeless weight. I calmed myself and said “okay, you have to deal with this and figure out how you can get yourself out of bed in the morning” because I am dependent on a walker to transfer myself. Could I do it with one arm. But, morning came and the arm was fine and back to “my normal”. Very scary though because I live with no-one who can help me, must depend on self.

      That’s interesting what you said about statin drugs. I have had an ache in my arm around the elbow area for about three/four months now, doctor can’t find anything wrong. I take vytorin, started it maybe about six months ago. Yesterday, I became aware that vytorin can cause “unexplained” muscle pain, hmmmmmmmmm?

    • Anonymous
      May 7, 2006 at 10:49 am

      Ali, yes, I am alone right now. My wife is in Connecticut until Tuesday taking care of her other three grandchildren to give her son and daughter-in-law a break. And our younger daughter in Denver where we spend half our time helping with Sydney (1 year) just went to Seattle visiting friends and rejoining with her husband. He returned today from a 3 week kayaking trip along the Alaska shore. They both needed a break, too. She is a medical doctor finishing her first residency year in emergency medicine. Her schedule is crazy, 80 hours a week, being on call every 4th day with little sleep. So we decided to help. We practically live in two places. That in itself is stressful.

      So being here for a few days is actually relaxing for me even though I am alone. This was the reason I wanted to stay here in our house. That thing with the rocks happened yesterday, the day [u]after[/u] the scary incident.

      Yes, that night I wished my wife would have been with me for re-assurance. But on the other hand, she often is so worried about me that this might have added to my distress.

    • Anonymous
      May 7, 2006 at 10:54 am


      So being here for a few days is actually relaxing for me even though I am alone. This was the reason I wanted to stay here in our house. That thing with the rocks happened yesterday, the day [U]after[/U] the scary incident.


      Sorry Norbert,

      I guess I was reading too fast, or not concentrating very well. Can’t believe you tried to do that after the incident!

    • Anonymous
      May 7, 2006 at 11:04 am

      [QUOTE=codystanley]Hi Norb,
      I had a scary thing happen to me, which I call “my dead arm” happened only once and never came back. [/QUOTE]
      Liz, this “dead arm” syndrome was part of my symptoms in addition to “dead leg”. The “dead arm” keeps happening over and over, even now. But that doesn’t scare me anymore. It goes away after a short while. The scary part was the electric shock wave going all the way to my chest taking my breath away. While I was on Prednisone for 2 months, this kept happening several times a day. This was the reason my neuro told me to quit. What happened 2 nights ago might have been an after-effect, my nerves “remembering”. Who knows!

      Now its back to IVIG in 2 weeks even though it didn’t help much last time.

    • Anonymous
      May 7, 2006 at 11:08 am

      [QUOTE=ali]Sorry Norbert,

      I guess I was reading too fast, or not concentrating very well. Can’t believe you tried to do that after the incident![/QUOTE]
      Ali, I am a pretty stubborn person ๐Ÿ˜€ The rocks were on my list of things to do while here alone. Next I want to spread several bags of mulch on the beds in front of the house. These things I got to do in order to keep my sanity and not get depressed over all the things I no longer can do.

    • Anonymous
      May 7, 2006 at 12:17 pm


      I was diagnosed with GBS in Dec 05 and put on a five day treatment of IVIg over 2 days to stop the progression before it stopped my breathing. I am one of the lucky ones who recovered relatively quickly – I can drive, walk ok, and do most of what I used to do (as long as I take into account the fatigue factor and increased GBS residuals when I over do things). But, one thing I did notice was side effects of the coctail of drugs I was taking. I became allergic to most of the nerve pain meds as well as the depression / anxiety meds. The side effects continued to happen for a while even after I stopped taking these drugs. I ended up having to research every drug I was taking (via the manufacturer on the internet) to determine why I was having problems. One of the side effects was the increased nerve zinging and deadness moving up my arms and legs and into my face. I started having chest pain and severe migraines also. Believe me, I panicked thinking it was happening again. I can’t say whether it was a particular drug or a combination of the drugs that set it off, but once I stopped the new stuff the symptoms gradually decreased in their occurrance. They still occur but not as frequently. Perhaps you should talk with your neuro about the possiblity that it is a residual side effect of the drugs you took previously or one you recently started — some of my problems took months to develop after I started the drugs.

      I hope things calm down for you and that it does not occur again.

    • Anonymous
      May 7, 2006 at 12:21 pm

      When I was almost finished spreading 8 bags of Cedar mulch, Carol called c(see, I am not a total lost cause. I had the cordless phone with me ๐Ÿ˜€ ) I told her what I was doing and mentioned your comments. She said she was glad she was not the only person telling me not to do those things while being alone .
      Well, I am finished and relaxing now. No more bags left. No “dead arm” or “dead legs”, just a little wobbly. It was relatively easy to get up from the grass. It was more difficult from the cement walkway but I managed.

    • Anonymous
      May 7, 2006 at 12:29 pm


      But, one thing I did notice was side effects of the coctail of drugs I was taking. I became allergic to most of the nerve pain meds as well as the depression / anxiety meds. [/QUOTE]
      Kathryn, thanks for telling me about this. It makes me wonder if being on the steroids might have changed my reactions to the other drugs I am still taking, especially the anti-depressant (Prozac, an SSRI effecting serotonin levels). I don’t take any pain meds. But I am going to look into the other drugs I am on.

    • Anonymous
      May 7, 2006 at 12:42 pm


      It was definately the depression drugs in particular which caused me problems. I guess my body simply won’t take those type of drugs so I just have to find other ways to deal…the forum helps me a lot because I know I am not alone and somehow it makes it easier for me to get through each day knowing that other have done it also.

      I hope you find the answer…it is a scarey experience – particularly when you are alone. This disease has been very hard on my husband because it hit me about 45 days after we adopted a baby. At one point my family was flying in and planning for a funeral. I try to make it as easy for my husband as possible because he travels a lot for his job, but I often think “what will happen if I suddenly become paralyzed again and can’t call for help”…particularly with the baby. I don’t like to tell him when the residual side effects occur because I don’t want to worry him unessarily. However, I am glad I have friends who check in with me regularly (if they don’t hear from me) just to make sure things are okay.

    • Anonymous
      May 7, 2006 at 7:41 pm

      Kathryn, isn’t it one of the major differences between GBS and CIDP that in your case you more or less get over it? My variant of CIDP has been going downhill over the past five years and I’ll probably end up in a wheelchair unless they find a way to at least stop the progression. At this point I don’t have much hope. So I try to keep active as long as I can even though it sometimes scares my wife.

      Sounds like you are alone a lot??? I can imagine that this concerns you and you don’t want to get your husband all worried. Even though I push the envelope sometimes, I decided to tell my wife what is going on with me (more or less , mind you), what has happened and how I dealt with it, like my scary experience a couple of days ago. This way she knows that I can handle it. The only time I really worry is when it comes to me watching our 1 year old granddaughter in Denver. This happens here or there when my wife has to run out for errands. Our daughter is a medical doctor and gone a lot. She relies on us to take care of Sydney. If I just have to watch her for a few hours I am OK. But I no longer trust myself to do it all day. The difference for me is that it is not a matter of relapsing but a steady more or less predictable progression.

    • Anonymous
      May 7, 2006 at 8:39 pm

      trying to make Sydney’s pix show up instead of a link

    • Anonymous
      May 7, 2006 at 8:41 pm

      testing attachments. OK, if it is small enough it will show up rather than a link.

      This is Sydney my granddaughtter

    • Anonymous
      May 7, 2006 at 8:45 pm

      this is Sydney, my granddaughter

    • Anonymous
      May 7, 2006 at 8:46 pm

      You are correct about GBS vs CIDP. Although, my onset for GBS lasted from Oct to Dec (before treatment started) so they aren’t sure where I fall and I only have a tentative GBS diagnosis at this time. I was told GBS is not supposed to continue progressing beyond about 6 weeks – I was still going downhill at the 7-8 week point with the pain moving up my spine and the numbness and paralysis into my face and lungs. I guess I live with the possiblity that it may not be GBS until we decide it is not coming back anymore. However for now, I am able to drive once more so that is real freedom. ๐Ÿ˜€

      But, I have increased numbness in my feet and it feels like the tingling is moving up my arms to my shoulders and up my legs to my knees – and also back into my face and neck periodically. It may just be due to stress. Let’s see – 17 month old busy bee at home, 15 yr old starting college this year (eek – 2 years early), 19 yr old junior in college, full time job, hubby in Europe for the next 2 weeks, moving in 53 days, no house for 30 days, hubby goes off for 6 weeks of more school, then get house and delivery of household goods while he is gone — nope no stress here. :rolleyes:

      My husband is military so that kind of explains his travel schedule. Our next assignment will keep him home more often so that should help with the work issues…maybe. As far as being alone – I actually prefer it to having lot of people around. Must be the introvert in me coming out. Ha, ha… Really I just can’t stand having people see me in pain and I hate to be fussed over.

      I told my husband this evening about the increased pain in my spine again and the numbness which seems to be very slowly growing. You can imagine he is not thrilled to learn this while he is in Europe. Assuming no further increase in symptoms, I have an appointment with the neuro on the 19th already scheduled so we shall see what the doc thinks. I told the love of my life that I will go to the ER if it gets any worse and I have taken to carrying my cell phone at all times.

      Okay I have written a novel and should let someone else have a chance to talk. Can you tell me more about your variant of CIDP? I don’t really know anything about it and perhaps others would find it informative also.

      And Norb…there is always hope!

    • Anonymous
      May 7, 2006 at 8:48 pm

      ps. Your grand-daughter is adorable. Bet she keeps you entertained.

    • Anonymous
      May 7, 2006 at 10:18 pm


      omg! sorry to hear of your experience. brings back unwanted memories. hope you stay ok now. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 8, 2006 at 12:05 am

      Norb, I am so sorry this happened and scared you so. I don’t have any answers for you as I still don’t understand what all is happening with my own body.

      I ended up in the ER with chest pain. The did tests and followed it up with a chemical stress test, nothing showed. No answer to what happened that day. But I only had the pressure in my chest radiating out. Not all the symptoms you had.

      I live alone, and being alone, I know how scary that can be, especially if you are in charge of a little one.

      I hope you are beginning to feel better now.


    • Anonymous
      May 8, 2006 at 12:11 am

      My 39-year-old daughter had some tests for arthritis and one of the scans showed a nodule in her right lung. She called to tell me about the nodule and planned biopsy. A week later, after nights of crying and praying, I ended up in ER with an asthma attack. It wasn’t asthma but a panic attack; I’m still dealing with the repercussions. On a very high note, Jessica’s doctor tells her that the nodule is benign (spelling?).

      Several years ago we had a thread about stress and its effect on GBS as well as stress as a causative factor. For the record: my balance is off, “bugs” are crawling up my legs and breathing is difficult. Ativan is helping and tomorrow will be the first of my relaxation technique sessions.


    • Anonymous
      May 8, 2006 at 12:30 am

      [QUOTE=Pam H
      I have a question for you about your comment on statin drugs. I had a complete blood profile done in Feb & all of my numbers were good except my cholesterol level, it is through the roof. But my doctor is hesitant to put me on a statin drug. I have been trying to lower it by eating a very low-fat diet. What is it I should know about this class of drugs?
      Thanks, Pam[/QUOTE]

      Dear Pam, I am directing you to [url][/url] where there is a wealth of information on what patients believe to be the side effects of statin drugs. Myself, I had/have a marginally high total cholesterol for which I was put on just 5mgs Lipitor daily. When my feet got so painful I could hardly walk I would come off it and go back on when pain went. This happened several times. Then I started getting really bad heart palpitations that I was told “everybody gets, pay no attention to them”. Easier said than done. I had a CT64 done of the heart in mid December 05 and it was completely clear. I stopped Lipitor. No more sore feet, no more palpitations, no more chest pain. I was dx CIDP variant about 2 years ago. Recently neurologist has changed that dx to Restless Leg Syndrome but am having fewer and fewer symptoms. I am very much more active.

      Did you ask your doctor why he was hesitant to put you on a statin. I would be most interested to know.

      Best regards,


    • Anonymous
      May 8, 2006 at 10:36 am

      [b]Val[/b], everytime I read about the possible side effects of statins, I get concerned all over again. I followed that link you gave once again and just like the first time I can’t help but think it is advertisement. Are there any scientific studies done that you know of? My cholesterol unlike yours was very high. Given that and my coronary artery disease I still think giving up the statin would be very unwise.

      [B]Kathryn[/B] I don’t understand why you even mention the word stress ๐Ÿ˜ฎ Wow, just thinking about your situation can make a person tense. I just hope you are taking it one day at a time. Where in Europe does your husband have to go? I grew up in Germany, came to the States in 1961 when I was 27.

      You asked about my CIDP variant: Ken from England has a very detailed website on CIDP variants: [url][/url] He also started a new thread here on this forum about it. Some call it PDN (Paraproteanemic Demyelinating Neuropathy type IgM). My neurologist prefers to call it CIDP with antMAG IgM. I have a very high number of antibodies of the M type that react with the MAG (Myelin Associated Glycoprotein) portion of the myelin sheath around the nerves. It is primarily sensory, effects the peripheral nerves and progresses very slowly over many years. A nerve conduction test (EMG) and a spinal tap with high protein in addition to the physical exam (lack of knie reflex etc) confirm the diagnosis of CIDP. Additional blood tests showed that I have this variant. Malignancies have been ruled out. It reacts very poorly to IVIG, plasma exchange or immunosuppressive drugs like Prednisone. There are reports that Rituxan does work. This is an engineered antibody spliced together from human and mouse components. It attaches to and inactivates B-cells. Unfortunately, it is only approved for nonHodgin’s lymphoma and a small number of other malignancies. It also is extremely expensive. This is the reason why I have not been able to get it so far. But I have not given up yet.

    • Anonymous
      May 8, 2006 at 10:59 am


      Thanks for the info on your variant…I am still in the learning stage about this disease and the various complications. I like to be armed with info when I go the neuro because I have learned sometimes you have to demand treatment. Note: A friend mentioned GBS as a possiblity when I 1st went to the hospital so we asked the Dr in the ER and was told “Not a chance that you have GBS since it is so rare”. 5 weeks later, in a wheelchair and struggling to breathe got the GBS diagnosis. Hmmm…it still makes me angry that they had the Lumbar puncture results with elevated proteins and didn’t refer me to the neuro then.

      About stress…if it seems complicated now you should have seen it 6 months ago. ๐Ÿ™‚ Maybe that is what contributed to the onset – that and the Hep A/B booster shot that I got for my trip to China. Not getting that jab again! Maybe it is the Type A in me that has to have 20 balls in the air at the same time – only now I am down to 8-10 balls in the air.

      Hubby (Bruce) is going to Poland (Warsaw & Krakow), Germany (Salzburg & Munich – not sure if he will get to Heidelberg where he was born), Austria (Vienna), and Italy (Venice and Verona). It is primarily a business trip but he hopes to stop and see some friends along the way. Where in Germany are you from?

      I will hope they expand the use approval list for Rituxin soon.

    • Anonymous
      May 9, 2006 at 3:30 pm

      . Where in Germany are you from?
      I knew you had asked me that question but by now there are so many threads it took me a while to remember which one and to find it.
      I was born and grew up in Offenbach am Main, about 5 k east of Frankfurt.

      Oh, you mentioned hep boosters. When my wife and I joined the Peace Corps in Thailand in 2001, we had to get an incredible large number of vaccinations. One of them was first time Hep A and B. A few weeks later the first symptoms appeared of what was much later diagnosed as CIDP. Now, since I know what it is I am still fighting with the US Department of Labor to have it recognized as job related. Anything that happens while in the Peace Corps is normally covered since volunteers are considered federal employees 24/7. Problem in my case, the P.C. nurse did not make a record of my complaint about my numb feet during the exit interview.

    • Anonymous
      May 10, 2006 at 7:00 am


      I am sorry you also appear to have contracted this from the hep shots. Hopefully they will eventually recognize it as job related…it is difficult to get the government to do anything.

    • Anonymous
      May 24, 2006 at 12:11 pm

      How are you feeling lately Norbert? I was trying to build a retaining wall yesterday, lugging heavy stones, and something happened to my back. Nothing at all like you, just cant really move much because of the pain. My husband is away in Nashville, and my 14 yr old was up at 3 this morning trying to help relieve the pain. Anyway, I get off the subject. Was thinking about you, because of what happened, and wondering how you are feeling. ๐Ÿ™‚

    • Anonymous
      May 24, 2006 at 6:52 pm

      Pam H-

      My last cholesterol test was very high too, but my doctor doesn’t want to put me on statins because she says they can cause muscle contractions. I already have muscle problems (residual from axonal variety of GBS), so she doesn’t want to exaserbate these problems.

      Now I’m trying to lower the cholesterol via “traditional” methods, ie diet and exercise (trying a recumbent bike which seems to be ok on my back).

    • Anonymous
      May 26, 2006 at 9:04 am

      Ali, this weird experience has not returned again. I am now convinced that it was still connected to the Prednisone I couldn’t tolerate. I am actually getting brave and try to walk around the house wthout my walker. Still hoping to see some results from the IVIG I finished a week ago. Last year it didn’t do much.

      Take care