Small Fibre Neuropathy

So sorry about yours & your husband’s situation. Been there. I will pray for you both. Beleive in the power of prayer. Have been on both sides of illnesses, it does hurt more to see your spouse suffer.
Love, smitty

You could try to connect with one of the Canadian doctors that specialise in GBS/CIDP. They maight be able to help you get more IVIG??

Just a thought,
Rhonda from Canada

Rhonda said something like ‘find an expert.’ Yes, you need to do that.

Here’s one in the USA at the Cleveland Clinic, a reputable place, who says she works with other doctors over the phone.

[url]http://my.clevelandclinic.orgstaff_directorystaff_display.aspx?doctorid=4962[/url]

Here is an article from John’s Hopkins where they sum it up with: “…Treatment of SFSN depends on the underlying etiology…” It only means treat after the reason is discovered. Unfortunately, you will read that diabetes, pre-diabetes and as yet undiscovered diabetes is one major cause. Please don’t let this mislead you. Just be aware of it.

[url]http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html[/url]

Well, how about that. I found it, right under my eyes. I see why. They spell out the whole name, no abbreviation. Here it is:

“…Systemic diseases frequently require more complex treatments. Strict control of blood glucose levels has been shown to reduce neuropathic symptoms and help people with diabetic neuropathy avoid further nerve damage. Inflammatory and autoimmune conditions leading to neuropathy can be controlled in several ways. Immunosuppressive drugs such as prednisone, cyclosporine, or azathioprine may be beneficial. Plasmapheresis-a procedure in which blood is removed, cleansed of immune system cells and antibodies, and then returned to the body-can limit inflammation or suppress immune system activity. [COLOR=”Red”][U]High doses of immunoglobulins[/U][/COLOR], proteins that function as antibodies, also can suppress abnormal immune system activity. …”

Located here: [url]http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm?css=print[/url]

It’s a long way down under ‘What treatments are available?’

The National Institute of Neurological Disorders and Strokes (NINDS) of the National of Institutes of Health (NIH) should be a convincing source for the power that be. Of course, they will only be convinced to use IVIG if, a big IF, an immunological malfunction is the root of the problem.

Good luck.

Hi Kathy,

My husband was diagnosed with CIDP back in 2005. I am really surprised that the Carleton Place Hospital attending physician diagnosed him right away as possibly having GBS. When he didn’t improve in hospital, they rediagnosed him with CIDP. That’s after they did a bunch of other tests to rule out Lyme disease, cancer etc.

I can only assume that his symptoms were more traditional than your husbands. He landed at the General Hospital where he steadily deteriorated. They did give him IVIG initially but never again. He was in intensive care on life support for 11 weeks. He had many Plasmapherisis treatments (over 50) but he always regressed again. Finally they gave him Prednisone… actually his doctor who then took over his case, Dr. Pierre Bourque prescribed prednisone. It worked like a miracle. He went to rehab and can now walk and returned to work. Dr. Bourque works out of the Civic Campus but Dr. Elizabeth Pringle works out of the General Campus. Both specialize in Neurology and are excellent.

We also live in Ottawa so I thought I would send some local ****{Hugs}}} your way.

[url]http://www.ottawaneurology.ca/en/bourquebio.php[/url]

Wendy
Ottawa, Ontario, Canada