Lack of clinical markers? What could be going on?

This topic contains 7 replies, has 5 voices, and was last updated by  Jcheart 1 month ago.

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  • #113389

    aamcw
    Participant

    A little background: Last March I started experiencing generalized weakness and extreme fatigue, also headaches and mild-moderate nausea off and on. Over the course of about 4-5 weeks, I went to urgent care a couple times, saw my PCP a couple times, and got a whole bunch of blood work done. Everything came back normal, other than Vit D. Then I had a significant increase in weakness in my legs over 3-4 days, followed by my arms. When I couldn’t pick up my cat, I went to the ER. They immediately thought GBS. My reflexes were intact, and they did a LP, which came back normal. They admitted me and started me on IVIG that night anyway, because it looked so much like GBS. By the next day, I could barely lift my arms, needed support to walk, had trouble urinating. My face and hands would tingle and go numb if I talked too much. My voice got weird. I had an episode of tetany with carpal spasm. I started having trouble swallowing, even small sips of water. My reflexes started to diminish. I got better quickly with additional IVIG infusions. Had a brain and spine MRI, which was normal. On day 4 I got an EMG, which showed “subtle demyelination.” For my neurologist, this clinched the GBS diagnosis. After 5 IVIG infusions I was sent home.

    I dealt with weakness and fatigue, slowly getting better over several weeks. By early May I felt at about 85-90%. Then at the beginning of June I got considerably weaker, the fatigue considerably worse. This terrified me, as my neurologist said I wouldn’t get worse after getting better. My neuro did an exam, which showed intact reflexes and normal nerve function, even though at this point I couldn’t climb the stairs and had difficulty getting out of a chair. She got me in for another EMG, which was normal. The doctor even questioned the results of my first EMG and ordered tests for Myasthenia Gravis, lyme disease, and some other things. But still I was very weak and exhausted. They did not treat me in any way, as there was no clinical indication to do so. I slowly began to improve. By the beginning of August I felt great. Throughout August and September, I had no significant fatigue, no weakness, and no sensory symptoms. I went back to work full time at the end of August and everything was fine.

    Right around the first of October, I started getting very tired. I chalked it up to stress at work, but it has continued and gotten worse, and I’ve started having headaches and nausea again. I’m also feeling tingling in my face and hands, muscle cramps in my left calf and foot (this is something that happened throughout my illness), and over the past several days, weakness in my arms, hands, and legs. I’m fumbling with things, having trouble opening packages, and it’s hard to stand up from a crouch. And I’m so, so tired. I called out sick from work today, and I don’t know how I’m going to do my job feeling like this.

    I’m reluctant to go back to the neuro at this point, as it didn’t get my anywhere in June. I suspect my reflexes are fine and an EMG would be normal at this point. It puzzles me that this looks so much like CIDP, but the normal clinical indicators are not there. In June, the neuro treated me like the sudden decline I had was all in my head, or just deconditioning. But I have a very good awareness of my body, and I know when things aren’t right. I guess I just needed to vent, but any similar experiences or insight would be greatly appreciated.

    #113391

    B
    Participant

    Sorry to hear what you are going through. Your post did not specify your neurologist’s specialty or if s/he is with a “Center of Excellence” as defined by this Foundation. Perhaps your next step should be a second opinion with a different neuro, ideally a neuro-muscular specialist from a Center of Excellence? At least then you could know if you fall into the GBS/CIDP bucket or should be looking elsewhere.

    #113400

    edith
    Participant

    I’m sorry to hear the tests done so far aren’t revealing what the problem is, but that only means the right test hasn’t been done yet, or perhaps the test for what you have hasn’t yet been devised.

    I’m pasting a portion of a published paper below, not because I’m hazarding a guess at what your correct diagnosis might be, but just to point out that often times people with “negative” studies, get better with IVIG treatment.

    Take note that the patient below is a doctor…I have noticed in my reading of a lot of case studies that all the stops are pulled out when a physician is sick…I think the major difference is that when a physician is sick the physician is always believed, and never psychoanalyzed, and when a lay person is sick, and his doctors can’t make a quick diagnosis, the doctors start thinking the patient has a psychological problem.

    I have experienced it personally, and witnessed it both professionally and as a family member of the person who is sick. It’s one of the saddest things in life when a person who is already dealing with a serious, life-altering illness is being blown off as a hypochondriac.

    When some doctors reach the limit of their knowledge they begin psychoanalyzing their patients. The poorer the doctor is, the sooner he starts doing this. When a good doctor reaches the limits of his knowledge he refers you to a doctor he thinks knows more than he does about what he thinks might be your problem.

    Go back to your neuro and give her another chance at bat, if she swings and misses ask her for a referral by telling her you just cannot afford to be missing work because of this thing you’ve got going on.

    Case study: Efficacy of IVIg in the Absence of Conduction Blocks
    SR, a 62-year-old medical practitioner, developed progressive weakness of the right upper limb over a period of 4 months. It began initially in the thumb and the fore finger and progressed to weaken all the fingers and forearm muscles, with mild wasting. At this stage, the left hand also got weaker in a similar pattern. Electrophysiology detected denervation and reinnervation of the distal upper limb muscles with milder forearm involvement. The paraspinal muscles were normal. No conduction blocks were identified on repeated detailed examinations. Anti-GM1 antibody was not detected. A provisional diagnosis of motor neuron disease was made and he underwent physiotherapy. At the end of 1 year and 4 months, he had not developed any bulbar involvement or upper motor neuron signs, and the daily activities were worsening. A trial of IVIg was given with the presumption of MMN without CB, with remarkable improvement in the weakness over 6–8 weeks. He took further courses of maintenance IVIg and remained well for the next 2 years, at which stage he succumbed to a myocardial infarction.

    The case highlights the efficacy of IVIg in the absence of CB and anti-GM1 positivity.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3141494/

    #113404

    aamcw
    Participant

    Thank you both for the responses, and thanks for sharing that case study. My doctor is a neuroimmunologist. I also saw a neuromuscular specialist in June who did my repeat EMG and questioned my dx. They are at Oregon Health Science University, which is not a center of excellence. There aren’t any centers of excellence in the pacific nw. My oldest friend is actually a neurologist at UCLA (she specializes in neurobehavioral genetics) and she recommended that I try a hospital that is NOT a research institution, as they might be more likely to treat me without hard data to justify the treatment. She also thinks I should go to Mayo if I can’t get a dx here, but there’s no way I can afford to travel that far.

    I sent a message to my neurologist with a rundown of what I’m experiencing and put the ball in her court. We will see what happens. I am pretty confident IVIG would help me, based on my rapid response to treatment in the hospital. But after what I went through in June, I doubt they will give it to me without a clear dx. 🙁 In the mean time, I’m limping along. If I stay like I am now, I can probably cope for at least awhile. If I get worse, I’m going to have to file for FMLA again.

    #113514

    cvramirez
    Participant

    Hola a todos, yo soy fisioterapeuta y fui DX con CIDP en septiembre del 2016 recibí 6 ciclos de inmunoglobulina y tuve una buena respuesta al tratamiento, mi medicación actual es aziatropina, deflazacort y pregabalina, soy deportista, hace 8 semanas aproximadamente empecé a sentir nuevamente disminución de la fuerza muscular, parestesias, y en los últimos días fatiga extrema y se me dificulta caminar en los talones , me hicieron una nueva emg y es normal aunque las velocidades de conducción están iguales a la primera electromiografia de hace un año con la que me diagnosticaron CIDP , pero luego de recibir inmunoglobulina tuve una electromiografia normal con velocidades de conducción mucho mejores que está , sin embargo el neurologo piensa que no está indicado inmunoglobulina y me ordeno repetir nuevamente el test de estímulos repetitivos que me había hecho el año pasado porque en ese momento tenía 31% de daño en la unión neuromuscular pero esto podría correspondiente a un falso positivo por la CIDP , hoy me hice nuevamente el test y es normal lo cual descarta una enfermedad como la miastenia u otra miopatia , pero el neurologo decidió que si el test era normal no me daban inmunoglobulina aunque las velocidades de conducción si habían mejorado después de la administración de inmunoglobulina la primera vez .
    yo me siento feliz de tener el test de estímulos repetitivos normal pero me preocupa estar con los mismos síntomas que hace un año y cada semana que pasa sentirme peor ,con menos tolerancia a la fatiga , seguir deteriorandome y no recibir la inmunoglobulina, además yo trabajo en una unidad de cuidados intensivos y práctico atletismo ,me entristece no poder hacer esto que yo quiero . gracias por su atención.

    #113517

    Jcheart
    Participant

    @aamcw We must have the same thing, so if they ever figure out what it is, please let us know, and vice versa.

    My symptoms started out exactly like GBS; lower leg weakness, bilateral, which then slowly progressed into my upper body, arms and then spine. This began for me back on June 24th and I am still undiagnosed and have been through a plethora of Doctors with negative test after negative test. Same thing happened to me back in 2009, crippled me for 4 months and no one could diagnose me then either, but thankfully at that time it just eventually resolved/remitted and my strength came back.

    This time however has been much worse, and has also affected my spine (don’t ask me how, except maybe all the muscle weakness caused so much instability, my muscles could no longer support the skeletal structure, idn), but two months in, I then ended up with an annular tear of my L5 S1 disc as well as multiple bulging discs. Frustrating to say the least, because I sometimes wonder if I had been treated at onset if I might have avoided what this has done to my spine. 🙁

    Anywway, I have another EMG scheduled this coming Monday so we shall see if it provides any answers. They will also be looking/testing for Mysasthenia Gravis this time around, which it sometimes seems like it could also be that.

    I feel your frustration and hope you find some answers as well.

    #113521

    aamcw
    Participant

    @jcheart Thank you for responding. It is so frustrating. I was able to see a neuromuscular specialist again. He did more labs for Myasthenia Gravis and another EMG, all normal. It got to the point where I could barely walk so I am now on leave from work. My strength has improved with rest, but the fatigue is unrelenting, and whenever I raise my activity level the weakness gets worse. Mayo just scheduled me for the end of January, so hopefully I will get some answers there (although if I’m lucky enough that insurance will cover it, I will have to crowdsource the travel expenses).

    I’m so sorry about your experience. Best of luck with your EMG! I hope they figure out what’s going on with you.

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