CIDP -Guillain-Barre

[chairbear]

Good morning all,

I have been confronting a very odd diagnosis that came completely out of left field. I have been experiencing a significant increase in the severity and frequency of numbness, pins/needles, spasticity, tone, and hand clenching, etc., assuming that the SPMS was aggressively advancing. Well, come to fid out I can now add CIDP (chronic Guillain-Barre syndrome), an incurable disease that attacks the myelin of the peripheral nervous system.

Has anyone else heard of or experienced this?

[rjoneslaw]

I had not heard of it I just looked it up. I read that if it's caught in time it can be cured. Was yours caught in time?

What treatment will you receive for it?

[chairbear in reply to rjoneslaw]

No cure but there is an effective treatment

[IFwczs]

I was told that this syndrome frequently causes MS, and that I have most likely had it before. I know you are in Florida, so have you gone either to the Mayo Clinic or the Cleveland Clinic?

[chairbear in reply to IFwczs]

No

[IFwczs in reply to chairbear]

Make sure to get at least a second opinion, but ideally at one of these clinics. People get misdiagnosed more often than they get diagnosed correctly.

[IFwczs]

I a sorry, I confused this with the Epstein-Barr virus. My questions about the clinics still stand.

[jimeka]

My friend was diagnosed with that and he was rushed into hospital, treated and now 4 years on he is back to his normal self. So maybe it may take some time with you having ms, but look for the rainbow which always comes after the rains, prayers are with you, blessings Jimeka 🙏

[Bodega1939]

Thank you for this post. After I read what you wrote I went "to the literature" and found more. My toes are mostly numb and so are some fingers now though the skin still has some sensitivity. My legs get really rubbery and, of course, my coordination is shot. I have often wondered if there are other diseases besides MS that cause all this or if there are diseases combined with MS creating the damage. I think demylinating diseases are very poorly understood. I cannot imagine anything much harder to study either, so progress in alleviating destruction, pain, etc. is minimal at best.

[sashaming1]

I've had it. My research:

Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body's immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms.

These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment.

The exact cause of Guillain-Barre syndrome is unknown. But it is often preceded by an infectious illness such as a respiratory infection or the stomach flu.

There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects from it, such as weakness, numbness or fatigue.

Symptoms

Guillain-Barre syndrome often begins with tingling and weakness starting in your feet and legs and spreading to your upper body and arms. In about half of people with the disorder, symptoms begin in the arms or face. As Guillain-Barre syndrome progresses, muscle weakness can evolve into paralysis.

Signs and symptoms of Guillain-Barre syndrome may include:

Prickling, pins and needles sensations in your fingers, toes, ankles or wrists

Weakness in your legs that spreads to your upper body.

Guillain-Barre syndrome is a serious condition that requires immediate hospitalization because it can worsen rapidly. The exact cause of GBS is not known. Researchers don’t know why it strikes some people and not others. It is not contagious or inherited. Once appropriate treatment is started, the better the chance of a good outcome.

These symptoms can increase in intensity over a period of hours, days, or weeks until certain muscles cannot be used at all and, when severe, the person is almost totally paralyzed. In these cases, the disorder is life-threatening—potentially interfering with breathing and, at times, with blood pressure or heart rate.

I was already in the hospital with a Traumatic Brain Injury when I got Guillain-Barre syndrome so they took the appropriate actions even though I don't know what they were.

All of the above information I got on-line after I struggled with it.