CIDP. The final diagnosis?
AnonymousMarch 5, 2011 at 8:50 pm
In another thread a question was raised about carpal tunnel surgery. Yet another thread asks about an inconclusive muscle biopsy. And on and on…
How many diagnoses have you had? Did you accept them? And, now? Do you accept your current diagnosis as ‘the one’? What do I mean? In my case I was told I had:
peroneal palsy with higher level lesion,
abnormal cervical paraspinal EMG,
anterior interosseous syndrome,
ulnar nerve(s) pinched
possible tomaculous neuropathy,
probable multifocal motor neuropathy,
Idiopathic Progressive polyneuropathy,
Multifocal motor neuropathy remains an unlikely possibility. IVIG unlikely to
be helpful. Expensive DNA tests available., but probably not helpful.
Sensory involvement more in keeping with CIDP than multi-focal motor neuropathy.
What is my point? I am suggesting that with each diagnosis you get you want to grab onto it as if it were a life jacket in rough seas. But, is it the right diagnosis? What have you done to confirm the diagnosis?
Anything? Everything? Nothing?
As you might surmise, I now go for at least the third confirming opinion.
Best of luck on your search for answers, treatments and cures.
AnonymousMarch 5, 2011 at 10:18 pm
But nearly 95%+ of my test results lead to CIDP …or one of it’s relative siblings?
I had been diagnosed w/carpal tunnel? 4 years before my ‘onset’ and it affected only one hand/arm. Treatments were massage therapies and exercises. Not much, granted, but the cause/effect of the carpal was a one time freak thing.
The sensory aspects of my CIDP onset were definitely bi-lateral [tho at different ‘speeds’?] and definitely progressive & agressively so. Nerve tests confirmed this aspect.
I honestly believe that there is a heap of cross-over between CIDP and such a slew of other neuro issues, that at any given time? A neuro writes down what’s in his mind at that one point in time!
I also believe, that should a neuro feel that a mis-diagnosis might have been done in the past? That I’d like to think that they’d re-test key aspects to either confirm or change their initial opinions.
Yuehan? One aspect you are missing here is all these ‘genetic’ issues! They are harder to test for, often ‘inconclusive’ and cost a fortune to little or no advantage for patients. They are still tricky tests to get done.
Me? I’m just glad I’m in the ‘neighborhood’ – it feels like the right one. Getting treatments that might work or possibly seek the more experimental treatments for? Gets you into many more doors than you would without any ‘names’.
It’s a starting point? Where it goes from there is up to you and your doc!
AnonymousMarch 6, 2011 at 11:45 am
Well, no, I didn’t exactly ‘forget’ genetic issues. Refer to the original post where I quoted a Dr as saying ‘…Expensive DNA tests available., but probably not helpful…’
And, again in the first post, my reference to tomaculous syndrome, or Hereditary Neuropathy with liability to Pressure Palsies or HNPP. It is a slowly progressive, hereditary, neuromuscular disorder which makes an individual very susceptible to nerve injury from pressure, stretch or repetitive use.
As I recall, goodney is one of the few, if any others, who has specifically mentioned genetic, or DNA style, testing. He didn’t mention which ones and neither have I. In my case I see no reason to bring them up because they were part of the battery of tests used to rule out disorders.
My only goal with this thread is to, hopefully, let those with a particularly difficult disease progress ask themselves “Have I received the right diagnosis soon enough?” Over the years, some of us have not and we have paid the subsequent penalties.
AnonymousMarch 6, 2011 at 9:24 pm
I only ever received a diagnosis of CIDP. I had to rule out hypothyroid as a cause of my symptoms, though. Once that was ruled out, I then did the typical blood tests, lumbar puncture, nerve conduction velocity (but not electromyogram), and clinical observation to reach a diagnosis.
Once we started treatment, things improved rapidly, stabilized, and then regressed. A change in treatment led to rapid improvement, which, except for some timing issues and a need to change immunosuppressant, has led me to a stable condition.
I never really questioned the diagnosis because my symptoms and test results fit CIDP very neatly and the treatments, all standard for CIDP, worked well.
AnonymousMarch 6, 2011 at 10:24 pm
Was wondering, what immunosuppressant are you taking? I am only on IVIG for CIDP and my doctors has never suggested any other treatment. Also, was wondering, during the disease period, when does a doctor decide to start on immunosuppressants? For anyone out there, does the IVIG cause you to become somewhat “weak” (muscular) for 1-2 days afterwards? My legs seem to be somewhat weak afterwards while walking. “Asthenia” is a side effect of Gammunex according to the drug information online. But I am getting Privigen. thx
AnonymousMarch 7, 2011 at 10:30 pm
Yuehan has a great memory. Nearly a year ago, I underwent very expensive genetic testing. My neurologist had already determined I had a demyelinating polyneuropathy, and the only question in his mind was whether it was acquired (treatable) or hereditary (untreatable). Athena Laboratories from Connecticut is apparently the only company in the world doing the testing, and a nurse came to my home and drew two vials of blood. A couple of weeks later my doctor phoned me to tell me the testing was negative for hereditary factors, that my neuropathy was most likely acquired, and most likely CIDP. I immediately started IVIG and have done pretty well, despite some notable flare-ups.
AnonymousMarch 8, 2011 at 5:43 pm
bump? It means I replied so this subject gets ‘bumped’ back to the top of the list.
I also had genetic testing by Athena, back in 2006. Let’s get specific, I’ll tell all-
Athena Diagnostics Co-GM1 Triad IgM, IgG, IgA; Co-asialo GM1; CoGD1b Negative The Co-GM1 Triad profile is negative…unlikely…symptoms are associated with an autoimmune response to these antigens.
Athena Diagnostics SMN Complete Profile for the presence of autoimmune antibodies against listed antigens Co-Gm1 IgM IgG IgA GM1 Co-GD1b SGPG ELISA MAG ELISA MAG Western Sulfatide IgM IgG GALOP Recombx Hu Negative The SMN Complete profile is negative…unlikely…symptoms are associated with an autoimmune response to any of these antigens. MAG Western Blot Analysis
And, by Athena in 2008-
Athena Diagnostics SMA Evaluation SMN1 & SMN2: 2 copies Normal
Athena Diagnostics Kennedy’s Disease (SBMA) DNA AR allele1: 21 CAG repeats This individual does not possess the SBMA CAG mutation
These are the expensive tests the Cleveland Clinic Dr was talking about when he said- “…there are expensive tests you can have. But, if the results are positive, there is nothing you can do about it…”
Yeah, nothing but get a ‘correct’ diagnosis and know what you are dealing with. If it’s hereditary, you are probably out of luck, treatment wise.
Anyway, what “we” are talking about is not those of us who have the ‘correct’ diagnosis. Rather, the thread is aimed at those of us who believe we have the right diagnosis, yet we may not.
Hence, my encouragement to consider two, and yes, even three concurring opinions. And, OK, OK, I no longer care how much it costs!
AnonymousMarch 10, 2011 at 1:43 pm
We were lucky…
Emily was dx’d with GBS Dec 2005. Then she was dx’d with CIDP in March 2006, when her symptoms returned.
She was tested by the MDA neuro for myasthenia gravis, lupus & the genetic testing others are talking about. The genetic testing came back fine & she tested negative for MG but she tested low positive for lupus, I was told the year of IVIG infusions prior to the testing caused the positive test & to not worry about it.
So…I believe she has CIDP but will always be on the look out for Lupus symptoms.
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