Polineuropathy

[gmunsot]

Is someone knows about the polinuropathy join, axonal and diesmilizante (I can not find this word in English) This condition affect nervous and muscles.

Thank you very much

[Joeglad]

Think the word is 'polyneuropathy'.

[gmunsot in reply to Joeglad]

Thank you, my English is very little and y try to use a dictionary.

Do you know about my previuos question?

Thank you again for your answer.

[nomansland]

Sorry ,wish I could help,if you go to the cure psp site with your symptoms you may find an answer....cure psp . org regards,Rollie

[gmunsot]

Thank you Normansland.I will

Regards

[easterncedar]

Dear gmunsot, I think you are asking about chronic inflammatory demyelinating polyneuropathy? I understand that is related or similar to Guillain-Barre syndrome, which my guy was originally diagnosed with. CIDP is an autoimmune disorder, in which the myelin sheath of the nerves is stripped, so is treated with steroids and anti-inflammatories and immunosuppression drugs among other things. It causes numbness and muscle weakness and progressive deterioration. It was CoQ10's supposed protection of the myelin that got us started on that in the first place, before we had the psp diagnosis. Maybe CoQ10 might be something to ask your doctor about? I wish I could reply in Spanish. My classes in that language were so long ago. If you are dealing with a diagnosis of CIPD, you have some hard times ahead, but there are treatments, I think. Good luck. Easterncedar

[gmunsot in reply to easterncedar]

Eastercedar:

I wish to thank for your answer. I was diagnoses with parkinson almost 2 years pero this week my doctor notice that I don't walk as people who has parkinson, my steps are normaly but found that my feet has a small deformation in the arch, Of course my hans shake. Also said that some medicine as Cordarone for arritmy must be change and other too.

I was waiting until july10th for the results of other test who was sent to United States.

The only good notice that I have is I am not candidate for a surgery DBS.

Please explain to me more. What is CIPD andCoQ10.

¿What kind of hard times i will have ahead. I think at mi age is very conviniente to know every thing with any illness because I can do many things about documents, what expect of my family? My friends, even divorce.

I am 69 years old, and let me trust in your experience.

I wish you undestand my English I also studied many years ago.

Sincerely

Guadalupe

[easterncedar in reply to gmunsot]

Your English is very good, but I'm sorry, Guadalupe, I don't have much more information. CIPD is just short for chronic inflammatory demyelinating polyneuropathy, which is what I imagine you are asking about. I hope someone else reading this site might have more information about it. CoQ10 is a dietary supplement widely used to protect nerves. It's found in drug stores and health food stores in pill form. It has been suggested to help people with PSP, and many people on this site are taking it. It is rather expensive here. Our doctor recommends it for people who are taking statins, which in some people appear to cause nerve and muscle damage. From what I have just quickly found on the internet, some people with CIPD get steadily worse, and some might not. There are treatments, though. (Unlike with PSP.) I hope your doctor is motivated to help you. Good luck, Easterncedar

[gmunsot in reply to easterncedar]

Thank you very much again and I for sure that mi doctors because are two specialist are motivated for me but always is presente the doubt If I were trated for 2 years as parkinson with this, everything changes for me. And I don't know if is wors or better that parkinson

I know that my doctors studied in France for many years and France (I investigate) is the best place for all this disease.

Ihave to wait until the 10 and if you wish, your comunnicatios.

Regards

From Mexico City

Guadalupe

[easterncedar in reply to gmunsot]

Of course uncertainty is hard. I hope you get good news, whatever that may be, when your test comes back. Everyone has a unique experience with disease, it's impossible to know what the best news might be for you. Confidence in your doctors is the most valuable thing, I think. I'm glad you have good specialists. Please do keep in touch.

[gmunsot in reply to easterncedar]

Of course, I wiill do inmediatly I have results. Always is better to know person who has being througth the same matter-

Tell me Is it your disease or someone in your family, probabily I can tell you about me when I have all complety.

Best regards.

Guadalupe

[easterncedar in reply to gmunsot]

My sweetheart was diagnosed with psp over 3 years ago. He is retired. I still work. His adult children live far away. I sort of fell into the role of caregiver, but don't regret it! All the best, Easterncedar

[gmunsot in reply to easterncedar]

I think that he is very looky with you at his side. I wish for you all the happiness that you deserve, For him, the best and, of course fell me as a friend any time. I want to tell you was the second in answer my post. The first only resolve my ortography.

Where do you live? You know that I am living in México City who is a tremenduos experience,but an incredible.

All the best.

Guadalupe

[Christine47 in reply to easterncedar]

Easterncedar,

Just out of curiosity, did you ever give your guy luteolin for the myelin sheath? I have been reading about it and just started giving mine luteolin with quercetin.

Christine

[easterncedar in reply to Christine47]

Hi, Christine. No, I haven't pursued any other alternatives. How is your husband doing?