Thanks Quix, I am here

[Idab]

Hi Quix, not sure if you will get this, I have battled all day to get through on both Neuro and MS sites - everything is just so sloooooow.  

I have managed to read all your notes.  I found the scleroderma information most interesting and today have gone into the Guillian-Barre symptoms and it is becoming quite scary.  Why would the specialist physician that tested me so thoroughly late last year not have mentioned all these things?  In fact in the 3 months I saw him - he gave me no indication of anything.  Then he phoned me in Feb 07 to ask me to see him again in April/May this year so that he could reassess me from head to toe, mentioned that it could be nerve related.  That is when I asked him to refer me to a neurologist, as his specialty is gastroenterology.  He said that he is a specialist physician and that he needed to assess me from head to toe and then take it from there.  But I am exhausted.  My daughter (7yrs) is seeing an educational psychologist as she was unable to cope with her Grade 1 tutoring last year, due to the emotional trauma of watching me being carried out of my bed by an ambulance, watching me being paralyzed in either leg at a time, in fact she always had the walking stick ready for me.  My husband and my son (10yrs) have gone through major depression for fear of losing me.  All, including myself did not think I would see 2007.  Yet, I have made it through with only prayer and aspirin, have not been able to bring myself to the Specialists appointment, for fear of the exploratory surgery and what I will put my family through again.  When I got sick again on 20th April this year, I told my children that I had a stomach bug and that I am allowed to get tummy bugs.  Not sure if they are entirely convinced, as the symptoms are exactly the same.  No warning, just aggressive cramping, nausea/vomiting and leaving me feeling 'disemboweled' for 2 days afterwards, only being able to drink soup.  It is almost like a build up of something in my system (the gnawing deep inside my legs is trying to tell me something) and then my body needs to dispel of whatever it is.  

To diagnose the Guillian-Barre syndrome – which would be the best specialist to see?  Could a Neurologist help with this as I am afraid that perhaps my gastro specialist has not heard of it, therefore his never mentioning its possibility.

Thank you Quix for your care and kindness.

[Quixotic1]

I'm so glad you're back.  I'm in the middle of a horrible bout of vertigo and can'ty look at the screen. In further reading, on the guillain-Barre I came across another disorder that seems to be the chronic, form ofGBS and thought you should look at some of the sites and articles on it.  Its called CIDP, Chronic Inflammatory Demyelinating Polyneuropathy.   I think it fits you better.  I would think a Neurologist would be your best bet, but if the specialist to whom you are assigned is that involved in his own ego, you're going to have to have some references, and a good knowledge of the disease when you go in.  I'll try to get back as soon as I can tolerate the screen-reading.  As it is I can barely edit my own posts.  The best to you, Quix

[Quixotic1]

I forgot to mention that CIDP is considerd the mor echronic form of Guillain-Barre.  I seems to fit the best with all the things that you have going on.  Imay, of course, be way off base, but it is worth reading about. There is also a website of GBS and CIDP sufferers that you could discuss your course with.

Here is a site from the UK

http://www.gbs.org.uk/chronic.html

Quix

[Idab]

and I am even more glad you're back... been reading some of your answers and have noted your pain and fatigue - just being there for all these people can be exhausting, but I know and as I have mentioned before - each and everyone is most thankful for your input.

I will immediately search this website and see if I can gather as much info as possible, as I know that if I am going to change specialists I need as much ammunition as possible.  The current gastro specialist has ALL my medical history from March 2006, when I first got ill.  

Another thing I didn't mention Quix is that in my last severe attack (18 Oct 06), my white blood count had shot up to 42 000, apparenlty this should have been around 12 000.  Just out of interest, they only had me on pain and saline drips for 5 days.  They would not administer antibiotics.  The last course of antibiotics I had was in June 06 when I came out of surgery for the appendix story and I hoped that all my troubles would be over, but little did I know that they had just begun, as I was then taken by Ambulance end July, Sep and finally Oct.  The April 07 attack, I just lived through it.

Thanks again and take care.