Hi Diana. Do you know what triggered your GB last year?
I believe it was super-stress in the month of December 2012. I began having flu-like symptoms Nov. 1st and by Dec 21st, I was flat and unable to move or get out of bed. All my muscles shut down with choking on food, constipation, unable to sit up without support, weakness in walking (had to use electric carts in store to get food.) I lived alone with no help.
Sounds awful. It often follows a viral or bacterial infection of the upper respiratory tract or GI system. CMV is not especially associated with it.
I also had pain shooting down both arms and legs. I was admitted from the E.R. to the hospital and kept overnight to be tested and to r/o heart attack. It was all fine and then was referred to an Infectious Disease M.D. in Atlanta. By the time I got into see him, I was 90% better. I have remained fatigued and am not sure it ever resolved totally.
About 30 percent of those with Guillain-Barré still have a residual weakness after 3 years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.
Were you treated with plasmapheresis or IVIG?
The Infectious Disease doctor told me with the symptoms I had that it was GB even though by that time the bloodwork just showed a 16.4 CMV IgG...not sure if the CMV IgM was elevated then. I also had tremendous difficulty breathing and talking then as I do now.
Sounds very much like GB, including the time course. It is not typically associated with CMV so this could be a "red herring".
My new doctor is young and just took his Boards and does not seem to know what to order or what to do, so he told me to see a Neurologist, but I can't get in for quite sometime.
So you have not been treated?
Were you treated for the GB? Did it help?
I read on-line that even when the IgM is normal it can just mean that the antibodies are too few or two weak to show up. It can be a false-negative.
Yes, but it really is not important in this case, because no matter what triggered your GB the first time, you likely have some remaining circulating antibodies to the myelin sheaths surrounding your nerves. Any subsequent infection that provokes an immune response can trigger a resurgance of the anti-myelin antibodies and lead to new symptoms, though usually less intense than with the primary infection.
Similarly, if you have an underlying rheumatologic condition that made you more vulnerable to the GB the first time. it could be flaring up a bit and causing similar (as well as additional) symptoms.
I would suggest you ask your PMD to do some basic blood tests to rule out a rheum condition and ask him to expedite the neuro consult.
Hi, Bob...I am so sorry. I did not see your printed answers until now. To answer your question I did not have any treatment to include plasmapheresis or IVIG.
I have a Heart Murmur and have had Mitral Valve prolapse which improved over time and is now considered a Mild M. V. Insufficiency. I agree with you about the antibodies. I tried last year eating avocadoes and acaia berry juice and strted improving after that. I tried that this last week and have seen a 25% improvement in breathing and fatigue.
That's pretty good...especially if the trend is continuing.
Do you know which specific tests should be done for a Rheumatic condition? Do you think I need to see a Cardiologist instead of the Neurologist first? Do you know why an IgG would climb if it only shows that I have had GB before, but supposedly indicates it is inactive?
Is it possible for me to get a print out of our conversation? I do not want to forget all that you have shared with me which has been wonderful!
Check CRP (C-reactive protein), ESR (sed rate), FANA (anti-nuclear antibody), RF (rheumatoid factor), CBC and anti-MBP (myelin basic protein)
I think a neurologist would be most helpful, because if this proves to be a recurrence (or a residual) of the GB, you may need to be treated more aggressively this time.
Thank You, Bob! I have received more information from you than any doctor anywhere since this all began. I am extremely grateful! The CBC was done on */26 and I have the results right here. What would you be looking for in there? To me the WBC indicates my immune system is suppressed. How do I eventually get a WBC back up? Reduced stress with more exercise? I have tried walking and gym since I arrived, but I am so fatigued I couldn't keep it up. I can last from about 8-2 or 9-3 everyday and then I become so tired I do not have the strength to even make food to eat at night. What do you think about Adrenal Fatigue and cortisol levels? I would have to see an endocrinologist, but I felt it was GB when the IgG began climbing.
IgG levels can wax and wane a bit depending on overall health, recent exposures, state of the immune system, etc. If they are rising steadily this might mean, however, that your immune system is ramping up, which could lead to a recurrence of some symptoms.
This occurence is as you said, less severe than the first time. Since ther is somewhat of an improvement in one week. Do you think waiting a bit to see if it resolves on it's own would be detrimental? I just am very reluctatnt to go into aggressive treatment..it frightens me. There are always risks.
Yes, and you seem to be doing a great job of researching and being proactive.
You are obviously trending in a good direction, and hopefully will continue to improve on your own.
Just keep in mind what we have discussed, mainly so you better understand what might be going on and what can be done about it should this continue to affect you.
Thanks, XXXXX XXXXX been fantastic and I have appreciated ALL the information and advice in your field of expertise.
You're welcome. I hope all works out for the best. Something tells me it will. :-)
I have a deep investigative nature and analytical skills which I consider a Gift. I traced my Family Tree back 13 generations a long time ago. I have been in the Medical Field for 47 yrs. and things change on a daily basis and I am always curious to dig and find out the latest update in various areas. I am not a Doctor. I am an R.N. and for many years some doctors would ask me what I thought was going on with a patient, so I kept "on-top" then. I do not pretend to know very much at all and that is why I have appreciated your advice. It has been invaluable. May God richly "bless you" for blessing me! I have a Nursing Ministry and work for God full-time now. Very rewarding. Have a Wonderful Week! Good-Bye and Thanks again! Diana
It's been a pleasure, Diana. As you know, we all work for God, whether we know it or not.
P.S. The Nursing Ministry is to minister to the physical, emotional and spiritual needs of people in their homes in the community. Jesus recently gave me an assignment to do a Jail/Prison Ministry. I see the inmates every Saturday for 30 minutes each. One day I saw 10 inmates! Hearts and lives are being changed. I deal mostly with the emotional and spiritual with them in their home (jail). Our website is www.nursingforchrist.com I pray that as I continue to help others heal, that God will heal me! Thinking positively!
Faith and hope are powerful medicines. I only wish we could bottle them up and dispense "as needed." :-)
You are absolutely right! Medical professionals ALL are serving others wherever they are and it is truly the work of God. I only meant that I left the Hospital, E.R., Hospice, Home Health, Rehab. Dir., L.T. Care and other jobs to concentrate on going and doing what the Lord instructed me to do. He is now my CEO...Ha. I met a Christian Doctor who has a Practice in WDC who prays with his patients and writes scriptures on his Rx pad instead of an Rx. He teaches at Georgetown University and wrote a book called the "Faith Factor." His name isXXXXX and I put one of his quotes on the cover of our Brochure. He said the Bible was the most important item he had in his Black Bag. :) Must go and not take up any more of your time as you help so many others! Enjoy your week!