Ongoing MFS, a second dose of IMG?
AnonymousMay 1, 2008 at 12:12 pm
I am considering a second dose of IMG, and looking for thoughts on the subject since it is so hard to know for sure which way one is progressing. I have had all the standard symptoms. Since my first stay in the hospital, about 7 weeks ago, I have had ups and downs, however there was a particular time period where I was especially vunerable. After my 2nd or 3rd week I had three days of very little sleep, doctors advised not take or prescribe sleeping aids, but in reality all I needed was a standard Tylenal PM Sleep Aid. It was after this time period some of my symtoms got worse. In particular my voice and throat constriction. It is now very hard for my family to understand me and eating is a chore. My shoulders also feel like I have a weight on them and I am now getting occasional tingleing in my big toe. Fingers also tingle and that is ongoing. No doubt the time period of little/no sleep set me back, but bottom line I am no where near what I was like on the first go around when I was admitted to the hospital. My vision has actually gotten better, but is still not 100%. I can’t focus on fast moving objects.
Thus, I really don’t want to go back for another round of 5 doses of IMG, especially since it is seemingly so hard to know whether you are truly progressing or going backward. If I am comforatable with the fact that another 5 day dose will be what I need, then I am ready to go for it. If what I am going through is just part of the normal repair process, well then I can deal with it.
Any thoughts out there on suggested direction?
May 1, 2008 at 2:20 pm
Have you been dx gbs or cidp? If it is cidp, you NEED to be on a regular treatment plan. If you have not been dx cidp, you may want to consider the possibility. If your speech and swallowing is worsening, I would say you are in a active relapse. I personally would not be waiting as breathing could become a problem. My 11 y/o son gets loading doses every month. Good luck!
Dawn Kevies month
AnonymousJuly 14, 2008 at 8:52 am
That’s kinda the same sitatuation I’m in. I had my IvIg treatment about 6 months ago, since then my vision is almost 100% back to normal, however, I have these recurring periods where I feel weird sensations in my fingers, hands, arms and feel generally weak and tired.
The problem is, I’m not sure whether these are getting worse or better. During the good times I forget what it feels like during the down times and I often get really stressed when I feel another down time coming up. For a while, when my eyes were still messed up, I would find that there would be an improvement to my vision after a down period, so I figured that the down periods are probably when things are being repaired, if that makes any sense.
I think the best we can do is try and determine if we are improving on the whole or getting worse.
AnonymousJuly 23, 2008 at 5:12 am
if it has only been 6 months since you were treated then you are most likely still recovering. If you overdo things then symptoms can flare up again (residuals). This does not necessarily mean you are going backwards, take it as a sign to rest up.
I know when i overdid things i would get extremely tired, get aches in my legs and my pupils would be unequal. 6 months is still early days by GBS standards.
AnonymousAugust 17, 2008 at 1:02 pm
I had the IVIG and then they wiped that out because they felt it was not doing a good job of stopping the attack. So they gave me the PP or PE. At 10 weeks I started to loose the double vision. I seen a Neuro Otpo in the hospital at my request and seen him each month for a field of vision test and exam. Each month but one he was able to see my eyes were healing slowly. Then he moved the appoints to every two months and then to three months and then to ever four months. When I got to 6 month exams I was able to start seeming big differences in my vision. Now I am scheduled to go back in a year. I still have the double vision when I look up at a plane or down to the ground without moving me head.
As far as the needles and pins and the tingling that changes from day to day! I feel that is the way I measure the regular healing process. If I over do it the residuals last more than a day and I report anything that lasts longer than that to the neuro by keeping a Journal. Listen to your body is the best advice. If I feel well every way but a cramp in my leg or back pain then I concentrate on the feeling well part. I don’t panic. I look back at my Journal and the others posts on here about our residuals and I can see I have recovered nicely over the years. I still struggle from time to time and my new normal is a very different lifestyle. When the healing process stops with the GBS then I will declare victory. I can say the residuals from the GBS were stronger than the effects from the MFV. Keep possitive and be patient!
With CIDP I agree with the others you need to be intouch with your doctor and learn how long you can go without a treatment of IVIG or Predisone. Pain meds will give you some comfort when you find the right combination for your body. You can manage your life now by being aware of how you feel each week or month. I agree right now you are in the very early days of healing and you will notice many many changes in your body. Keeping that Journal is very important. It will help you get on a routine allow you to figure out when to exercise or work on range of motion and balance and stamina. For now your body does need plenty of rest!
AnonymousSeptember 8, 2008 at 4:48 pm
Thanks to all for your comments on MFS and repair. There is no doubt that the effects of this syndrome can be very confusing.
I am now approaching 7 months into this, my vision returned a month ago and I began to drive therein the same time. I am going back to work this week, but still have the symptoms of weakness, tiredness, tingling and soreness, and my voice / mouth is still numb causing speech to be a bit strange. I suspect as many of you have implied, it is simply repair going and trust your body, get more rest and journal for symptom markers. I suspect I may be in for another 6 months before I feel normal again, but that is alright as long as I move forward!
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AnonymousSeptember 24, 2009 at 1:58 pm
Well, the saga continues. This is not fun stuff, and as I read and learn more, I do have to admit I am lucky in alot of ways.
This whole disease is very confusing to me. I have good days and bad. Some days I wonder if I ought to request another IVIG or just bear it out. I am gonna have another nerve test the first part of October and suspect based on that result, I / Dr will make decision on a new round of IVIG or not. By the way, I have had three total in the year and half.
Another interesting thought; I tried to hook up with Long Term Care for myself and wife. I did not qualify; I have to be symptom free for two years (No IVIG). My wife did sign up…thank you! It makes me wonder if I should go for the two years or opt for another IVIG should the consensus be that it would help. Again, the confusion, will it really help or not? How do I know whether to go for it again? Do I need to start to lose vision or have constrition of the throat? Are the symptoms I have now just the repair process? I am 57 and feel like I am 90. Bottom line, my vision is good, (I had lost it for 5 months initially). Swallowing is good and I am gaining weight. Sleep is good and if I do have problems, Doc gave me some sleeping pills. I also take Prosac (sp) and have some Ridalin sp? to help on some of the really beat up down days…. I just don’t know for sure that i am getting better. Most days I feel like someone just beat me up. Arms, shoulders and neck are always stiff and sore. Lips and cheeks are numb and fingers have limited coordination and feel numb too. Forget any fine dexterity in the fingers.
Well not much else to report, just wanted to get this off my chest. Let me know if anyone else out there has any additional thoughts or ideas. Anyone taking any supplements? Mylear Sheet repair pills?? Alpha Lipolic Acid, Liquid Vitamins, Juice Plus [url]https://www.juiceplus.com/nsa/content/ClinicalResearch.soa[/url]
Bye for now.
AnonymousSeptember 24, 2009 at 11:36 pm
Mick56 just to give you an update on my slow progress. You still have not got a dx of GBS or CIDP? IVIG is given 5 times every other day and so is the PE. Not sure what schedule your Doctor is following. That part is still not clear. I just went back after a year for my eye test and everything is good and no worse but no better. But where it is now is a far cry from where it was to start. I have lost that double vision when I look up or down the eye muscles are gettting stronger. I feel that even the clearness in my eyes from the floaters that I had before I got GBS is better! I am finally happy wilth my eyes for this older body that is a few years older than you. I have to use reading glasses but that is ok. My eyes don’t get as tired as they did a few years ago. This November (2009) will be 4 years and I feel the little bit of loss of field of vision is normal and I enjoy driving and sight seeing again! Everyone is different in where the residuals end up but my hands and feet have only got a tiny bit better as far as being numb. But the strenght in them has improved since last summer. The fatigue has gone away last year and I can tell you I feel much better. I still require a nap here and there depending on the day or weekend I have had. I pay for a busy day and over doing it but recover if I take a day or day and a half to recover. To me that is reasonable. I still am not able to work or do yard work like before. I can handle a full day out away from home if I come home and rest the next day. It has become very predictable and I know my limts now. Sometimes I surprise myself too! House work could be a little bit easier but then again I used to do it all. Now I have to ask for help. Laundry, dishes and cooking are no longer hard for me to do. I think clearer too, not as much GBS brain fog! I can concentrate for longer periods. Noise wears me out physically, because it makes my body or muscles vibrate and waste energy. But that has improved so much from the first year. I do not have any reflex in my knee or arms. Although the last doctor exam she said she thought there was a twinge in the one knee. I don’t walk with my cane as much and the wind does not hold me back as much. I still have weakness in my hips and back and that keeps me from walking as far as I would like. I do use the electric scooters in larger stores. The rest of the time I just hold on to the grocery cart and do well. I have again started back to rehab to strenghten my back and my hips. I am sure they will work on the abs also to support the back muscles. Once all the muscle get some more strenght then the balance will be much better too! I still have some goals to work toward. Listen to your body. Ask yourself some questions like what you did the day before that caused a set back today. Are you doing exercises that will give you more range of motion in those joints and flexibility where you are getting stiff. Is there any exercise I can do to strenghten the fingers or ankles. Usually stiffness or pain is caused by that area being weaker. Do stretches to help those shoulders and try Yoga it is a slower precise way to exercise and does a body good. Most of the Martial Arts are good. What you don’t want to do is something like boxing or doing too much. Back down in your routine and let those muscles gain strenght before you move on to adding too many reps or weights to your routine. Motion is going to be your best friend and being in a pool might be what you need to take some stress of the joints. Maybe doing things all at once is not what you need but you need to do less amounts several times a day. All that exerces if adding up over the week. If you can only handle walking or exercising 5 minutes then do it each hour or every two hours to get in your daily exercise. A little at a time really adds up quickly! Be patient and give your body time to heal. See what your test shows and talk with your Doctor and see if he is going to call this GBS with the MF variant or do you have the cronic form of GBS called CIDP? Treatment for either one is not the same……they are very different! Take care of yourself!
AnonymousSeptember 25, 2009 at 10:26 am
They tell me I do not have CIDP, but I think there is a little bit of uncertainty on the medical opinion as they are gonna do the nerve test again in Oct.
Sounds like there are alot of similarities between us as it relates to GBS / MFS. Have you gone back for additional IVIG at anytime after initial occurance and during the 4 years? My dad seems to think that every time I do the IVIG I get a bit better. I think I agree….and improvement seems progressive, not like I get better for a while then digress. I seem to add new improvement across the spectrum which obviously makes me wonder if I do It again for example, will I gain even more??. Nonetheless, other items/concerns seem to surface as time goes on, but I believe those to be residuals and from the sounds of it, just part of the syndrome.
Thanks for thoughts!
February 08 dx
3 IVIG’s, Feb, April and December, 08
AnonymousSeptember 25, 2009 at 7:51 pm
Mick 56 from what i can see and other might correct me if I am wrong. From what I know about IVIG they give it for 5 treatments every other day. You have not had that so not sure how they expect you to get the right dose to help you. You are also not receiving enough or on a regular schedule after the first treatments to put you on a maintance dose or treatments on a regular basis for even CIDP. I am not sure your team knows enough about GBS OR CIDP. Once you get that initial IVIG and it startes to work and stop the attack of the GBS you don’t get it anymore. In my case they did not feel I was responding to the IVIG and they went into the Plasmaphresis Exchange hoping that would stop the attack of the GBS. It did and the process started to reverse and my body started to respond slowly. When you do the PE that wipes out all the effect of the IVIG and is a more agressive approach. I don’t take any suppliments or medications. I have never had any more IVIG or PE. I had relapses and become frustrated. Usually I go bad to my journal and its go back to a busy day and see why I felt so bad. I did too much. I paced myself and did not schedule rehab for days that I had grocery shopping or a doctor’s appointment. I could not complete that much in one day! Now I just go until I get that feeling that my legs are heavy and I don’t want to walk, sitting down is what I need. I just go home when possible. I know when I have hit my limit for the day! I hope you get some answers from the tests to confirm what you have so that they can start to treat your illness rather than just playing around with your life.
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