Lingering symptoms to a TD vaccine

[Paige]

Dear Dr.
I have posted here in the past and you have always been most helpful.  I thank you for this service.

In Dec. of 98 I suffered a pretty severe auto-immune reaction to a TD vaccine.  I was bed ridden for months, had tingling, burning, aching, etc. in my arms, weakness on my right side, muscle twitching, lightheadedness, constant flu like feelings, etc.  Every test in the book was done, and all that came up positive was my ANA level, and it was a low positive.  Drs. told me I had a GBS-like disorder.....I have slowly, slowly, slowly recovered this past year, but I do have some lingering symptoms I am hoping you can help me with.

First, I tire more easily than before this ordeal (I am only 25!)and feel flu-like all over and aching in my arms off and on. Will this go away as my body continues to heal?

Second, I still have an extreme sensitivity to artificial lighting.  Incandescents in my house seem too orange while fluorescents make things seem way too bright and disorient me.  I even feel the flu-like aching symptoms in artificial light sometimes.  I don't understand how this lighting could affect me systemically?@? Sunlight is fine.  I know that I have grown to anticipate this reaction in light and it has been quite anxiety-causing for me.  Could this be a psychological issue rather than a result of the vaccine? And have you ever heard of this before?  I had no trouble w/ lights of any sort before this incident.

Thirdly, have you ever heard of something like GBS turning into MS or ALS?  I know that no demylination was shown in any of my MRIs or my spinal fluid, but since I con't to have symptoms, this is a conern.  I am a 25 year old caucasion woman from the north, and from what I understand, that is a good fit for the MS profile.

Finally, how long would it take someone to recover from something like this? I was told 6 mths. to a year earlier, but since it's been a year, I would like to think that I will con't to slowly make improvments over time.  But I would also like to know if this is something I should just get used to living with???

Thank you for any insight you can provide.  I appreciate it.

Sincerely,

Paige

[CCF Neuro[P] MD, RPS]

Dear Paige:

The literature indicates that one can be GBS from a tetnus vaccine.  However, the EMG should have been diagnostic of GBS.  I don't remember if your EMG showed GBS findings?  If not, then I would greatly question the diagnosis. Both ALS and MS are completely CNS or include a CNS component while GBS is strictly peripheral.  There is not record to my knowledge that GBS has ever been linked to MS or ALS.  The recovery from GBS is from the muscle weakness that GBS induces.  If a patient required intubation for a long period then recovery would be only partial, if weakness did not require a hospital stay, then recovery would be complete in several months.  If by neurological exam and EMG you display profound muscle weakness then there may be something else besides GBS occurring.  I would revisit with your neurologist and see what the neurological exam and some repeat lab work has to say.  The light problems can be from many things and I am not sure what to make out of them.

If your workup before was not diagnostic for GBS, and your still having the symptoms I would really try and have your neurologist search for why your still having your problems.

Sincerely,

CCF Neuro MD

[Comments re. Paige's situation - Maureen]

Paige and I have e-mailed as we both have the eye problem in common. I have the exact reaction to artificial lighting.  Prior to my illness I had perfect vision and no light sensitivity.  My eyes have GREATLY improved over the course of the last 3 1/2 years.  I can't say why, but I feel that supplements, acupuncture, and rest contributed to this improvement.   I have a few comments I would like to make.  First of all, please note that Paige said the doctors called it Guillian Barre "like" and did not dx her with Guillian Barre.  I too fall into this category.  

I have finally seen a neuromuscular specialist in Phila., a female whom I will not identify on this forum so as to protect her professional privacy.  For the first time, a neuro (she) took ALL my symptoms into account and seemed to understand their interconnectedness.  I still do not know for sure what my dx is as she and I have not yet discussed my blood test results.  She ordered many.  I know for sure she wanted to rule out mitochondrial disease, porphyria, sarcoidosis, and vasculitis.  My chest X-ray is normal (I think that rules out sarcoid), and my SPECT scan also fine (rules out vasculitis).  She did say something to the resident about possible "post-infectious autoimmune syndrome."  

My point here is I wish neurologists would take a look at the diseases taught in med school and found in texts and figure out WHERE WE FIT IN.  If we don't fit into any existing category, then PLEASE CREATE A NAME FOR OUR PROBLEM!!!!  There are many many of us out here.  I know because I have spent 3 1/2 years talking to them over internet and telephone.  Of course, we don't all share the exact set of symptoms, but there are frequently significant similarities (fascics, other neuropathic pains, visual problems, fatigue among others). Medicine should be an ever changing art.  After all, AIDS didn't always have a name and now it does.  We need a name!!!!

I would be happy with "post-infectious autoimmune syndrome" because at least then I would have some psychological relief.  I think a lot of neuros (all due respect to the kind neuro here at CCF) don't understand this component.  For almost 4 years I have not been able to tell my family, friends, and collegues what the name of my problems is.  It would mean so much to be able to label what is wrong.  

It pains me to think of Paige suffering so at 25 years of age.  Fortunately for me, I was 35 and had already given birth to three beautiful children, who are the light of my life.  They have seen their mother shed many tears.  I have tried as best as I can to explain that I have a nameless disease/condition/disorder.  They are my reason for pushing forward through clouds of uncertainty.  

I would like to conclude by saying that I did find one abstract entitled "Guillan Barre with Widespread Fasciculations."  It was from the 60s and I have not been able to order it.  

Paige, god bless you and know I am praying for your recovery.  Maureen at ***@****

[To Maureen and RPS MD]

Maureen,

I must say I have to agree with you on that one.  Although I do not have any similarities with you or Paige, I too have gone undiagnosed.  I am not a textbook case of course, and the difficulty in diagnosing with having symptoms of one thing and another puts a neurologist on the line for achieving a proper diagnosis and then you have the patient wanting a diagnosis so they could have some type of closure to the situation or not be referred to as a psychological patient.  I have been told mine could all be stress related, but we must wait and see, even though I have positive antibodies for MG, a positive ana test which is speckled, a positive somatosensory test for latencies in my lower extremities, a high variance between two eyes in the ver  although the latencies were normal, I have lost all my deep tendon reflexes and my gag reflex within the past year, a borderline sfemg with 2 areas of jitter in the orbiculus oculi, sensory problems some permanent some that are transient, rashes that appear for no reason that look like welts, some weakness in the legs, hands and lower arms, you name it, and yet I am told I have a normal neurological exam. I have a family history of MS in an older male sibling, RA in older male sibling and parent, migraines in siblings, self and child.

All the positive tests that I have are "orphan tests" that cannot stand alone for one diagnosis, so I sit and wait and think well am I going  out of my mind and imagining this or is all this really happening.  I can completely understand the neurologists hesitation for diagnosis as there is no clear cut/text book case here.  What I don't understand is the feeling I get from not being diagnosed or the fact that no answer can be found, is that it is put on the patient from the physician as "you probably are just stressed out".  It is very hard for a patient to deal with that on top of the frustration of not knowing what their problem is.  

I would like the doctor's insight as well.

Another undiagnosed patient

[To last poster]

Can you please explain to me what that is - sfemg with 2 areas of jitter in the orbiculus oculi?  I think I might have that too!  I am so sorry you are suffering so with no answer.  Maureen

[CCF Neuro[P] MD, RPS]

To the posters:

It is really an impossible task to diagnosis a disease over the internet.  We do not get to examine the patient, we hear the story over a typed page without the chance to really see how the answer is given, whether there is more to the answer, and to ask our own questions.  We do not get to actually see the patient.  The labs and MRI films are not visable or known by us, or what lab they were performed in.  The etiology of any disease is very individual and often we don't how a particular patient will express the disease.  Most of the postings are from patients who have been to several physicians without a diagnosis.  Yet, we are blasted for not giving you the diagnosis, for not listening to you, and this is a free service to you.  Thanks for listening, we try our best and I sorry that in your eyes we fall short.

CCF Neuro MD

[To Most Respected Dr. RPS and a PS to Ma]

Dear Dr. RPS,

I am sorry if you thought that you were being blasted and that you were falling short in anyone's eyes. What I agreed with on Paige was the comment on the syndrome she mentioned. Maybe the words were written in the wrong sense. I merely was trying to get your opinion as I think  the others were as well sir.  You provide a great service and to me your responses are adequate and you are most respected.  I am  fully aware that NO ONE is able to diagnose anyone on the internet especially with no tests in hand, I would think the closest one could get to a dx via wire would be through telemedicine.

I think you may have blasted in the sense of pent up frustrations which if that is the case I apologize because you are not the reason for my frustration.

I just wanted your opinion on the above poster's comment on post-infectious autoimmune syndrome, even though that wouldn't apply to me as I had no infections before my symptoms appear. And your opinion on any other work that they may be doing on such cases that continue to go undiagnosed as they are not completely text book.

Please accept my sincerest apologies for any offense taken, I personally did not write to offend you at all.

Thanks again for your help.

Another Undiagnosed Patient

PS:  To Maureen the orbiculus oculi is the eyelid muscle, they test it by sticking needles in the forehead and eyebrow for abnormalities like jitter and blockages.

[C J]

Hello Everyone:

Doc Rps informed that literature indicates you can get GBS from a tetnus vaccine.  Also, please note that synonyms regarding the word "like" when applied as an adjective are:  alike, same, matching, equaling, related, twin and identical.  "Like" when applied as a noun are:  counterpart, affinity, relation, association, and connection.  Personally for me, there is no conjecture here.  Sounds like a plain old diagnosis to me.  "You have a GBS-like Syndrome" or "You have a GBS-counterpart, depending upon the identity of the virus involved."  If you must insist on a name for the "nameless" illness, label it "post-viral autoimmune disorder".  Make sure you know which type you have.  PVAD-1 would involve contracting GBS from the Flu... and PVAD-2 would involve contracting GBS via Tetnus.  Make sure you know which type you have when you have to explain your"unexplainable-to-the-average-Joe" dilemna to the average Joe.

I had a particularly bad case of GBS (via a contaminated flu vaccine) back in 1972 when Nixon was President and the Vietnan war was playing nightly in our livingrooms.  I missed the respirator by the skin of my teeth, was totally paralyzed from head to toe, spent two an a half months in the hospital, and went home in a wheelchair still not able to walk at the age of 18.  They knew close to zilch about GBS back then.  I did my own PT laying in bed lifting cans of soup, pork n' beans or whatever in place of weights.  It took me two and a half years to feel like something again, but it happens.  You'll probably never be the person you were before.  Those are pipe dreams.  You will have some residual, no matter how involved you case is (was).  I have partial paralysis on the left side of my face, hot and cold sensitive hands and feet, not to mention the same sensitivity to artificial flourescent lights as Paige and it's been 28 years since I was laid up seeing double with these eyes. (anybody have double vision with their GBS?)  I hate to sound peevish and hyper-critical, but when I had the stuff I WAS pretty much alone in the desert back then.  It was pretty rare.  I'm sure Doc RPS quite feasibly, just might back me up on those facts.

The light sensitivity issue.  I addressed it on Paige's previous post.  The physicians can't see what we see, and there are no tests available to address it, so we have to endure it.  Neutral grey tinted lenses.  Not the cheap tints!  Have the optician describe the various types and choose the one that provides the most intensive light filtration.  Tint them for indoor use.  The problem is not psychological.  It's far from it, unless you let it get the best of you by not alleviating some of the problem- which is filtering the light.  I wore my tints right into the delivery room when I had both my kids, shed them for the "pushing", then stuck them right back on after I wiped the sweat off my face.  (There's no need to frighten Paige in the "having babies" department.  It all depends on her and how she feels).  The light condition does get better, but not 100%.  More like about 50 - 60%.  Patience and endurance.  That's what it takes to beat GBS.  You don't need physician approval to fight back.  As a matter-of-fact, that's partly what they want you to do... engage in a little personal one-on-one within reason.

I told myself that I wasn't going to allow this comment to get too lengthy, but I'm a 28 year veteran of GBS and facts are facts.  Good luck to all of you... and don't allow this stuff to get you down .  Just put your tints on and see through it.

Sincerely,

Christine Jenkins
(***@****)

[Thanks Christine]

Christine,

Thanks so much for your comments.  It is interesting that you bring up the sunglasses thing.  I had already told Paige to try "club glasses" in light purple or blue.  That has worked great for me.  Regular sunglasses are too dark since my "night vision" seems worse.  My eye improvement is more like 80% after 4 years.

[Maureen McL]

Christine:

Also, can you direct us to any literature/websites on PVAD-1 and PVAD-2?  Thanks.

[C J]

Maureen:

I didn't say that PVAD existed.  I said, "If you must insist on a name for the "nameless" illness..."   It's Guillain Barre to me.  All post-viral is GBS-counterpart.  I think the PVAD-1 or 2 is a good idea, don't you?.  It definitely gives a name to the "nameless" dilemna.  Everyone is entitled to some form of the truth.  Don't you agree?

Also, I mentioned the neutral gray tints (not sunglasses) to Paige on her first Post.  I say "tints" because you personally control the amount of tint coating the lenses.  If they're too light, they can be reimmersed, if too dark, they can be faded.  Here again, it goes along with recovery.  Like when you're just out of the starting gate and the sensitivity stands at 95%... "How dark do you want for comfort?"  Incidently, I wore almost black Ray Bans laying in the hospital bed to combat window light.  I felt like a vampire.  Five years down the road, driving at night became my forte.  Still is. (Ironically, my husband is a trucker.  Our kids are grown and this vampire rides.)

Think we ought to submit the PVAD thing?

Christine

[CCF Neuro[P] MD, RPS]

thanks for the comments.

CCF Neuro MD