AnonymousApril 22, 2007 at 9:59 am
I fell ill with GBS in May 2006 and had a relapse in July 2006. I have now fallen ill once more, and the doctors have now diagnosed me with Myasthenia Gravis. And Polycythemia. My body seems to be falling apaart, and the doctors are not wanting to speak to me. They are running amok, trying to find why I am getting sick. The doctor cannot believe that I am able to fall ill with GBS and then with Myasthenia Gravis. Could someone please help me????
I need to know whether it is possible for people to contract both illnesses, or whether my doctor has misdiagnosed me now?
All help will be greatly appreciated. Please email me at firstname.lastname@example.org.
I am desperate!!!!!!
AnonymousApril 22, 2007 at 10:57 am
It is possible to have both, I would think.
You need to find dr’s that are familiar with both diseases. If you can’t find neurologists that know what they are talking about, I would recommend finding a Muscular Dystrophy Clinic. We took our daughter to one for a few months & the dr’s there know alot about these kinds of diseases.
AnonymousApril 22, 2007 at 1:26 pm
I”m so sorry to hear about your difficulty in getting a good diagnosis. It is scary and frustrating to not be able to get answers to such frightening health problems.
Autoimmune and neurological diseases are often very difficult to diagnose, since many of them have no definitive tests, and the symptoms and presentations are often similar and overlap. Many times, it is a process of elimination that determines the diagnosis. And yes, it is possible to have GBS and MS, although extremely rare.
My neurologist suspected MG as my problem when I had GBS. In my case, after the usual spinal tap and EMG, a single fiber nerve conduction study was done by a neurologist who specializes in MG, and I was given a trial dose of Mestonin (a drug for Myesthenia Gravis). The combination of my test results and lack of any response to the Mestonin were the main factors that made my doctors discard MG as my diagnosis. Were either of these things done for you? How was your diagnosis of Myesthenia Gravis made?
It is also very rare for GBS to recur, although it does happen. When there are several reoccurances, it becomes more likely that the problem is CIDP (a chronic form of GBS).
In my own case, my presentation and symptoms were not the “usual” ones for GBS, and my original neurologists were not very knowledgeable about GBS. Because of this, they spent quite alot of time scratching their heads or misdiagnosing my problem. Eventually, I requested a referral to John’s Hopkins Neurology Dept., where my diagnosis of GBS was finally made.
Don’t dispair.. If you feel that your current doctors aren’t responsive, or are not giving you answers that make sense to you, get another opinion, and another, and maybe more, until you feel comfortable with the diagnosis.
I hope you find the answers you are seeking soon.
AnonymousApril 22, 2007 at 6:50 pm
Im trying to remember if there is a teaching hospital in Durban, but my memory fails me. I’m talking about a varsity teaching hospital. I was in contact with someone a couple of years back (lost contact though) from KZ Natal who was talking about the fantastic care they got in on of the Durban’s hospitals, this was for GBS, but the neuro’s there may be more knoledgeable. Are you on a private medical aid?
For a good deal of my GBS i was in Joburg Gen, that was in the mid 80’s, and it was absolutely fantastic. I know hospitals have changed a great deal since then.
Who is your neurologist at the moment? I will call my folks in Joburg, and possibly my uncle in Maritzburg, tommorow and see if they any information at all that they can pass on that may help you. I know its a long shot, but you never know what can happen.
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