Checking in...

[dogmum]

I just wanted to stop by and say hi.  Every time I stop in there are always so many helpful and friendly posts going on that I regret not coming by more frequently. I've been pretty scarce lately as I'm having problems with my eyes again lately.  My legs are also acting up, but I'm still walking with a cane mostly.  We got a bit of snow this past week and that cold combined with a lot of strong wind has my TN is acting up as well.  

Anyway, after I got back to Italy after my visit to the US and US neuro, my doctors here are basically uninterested in working with my doctor there.  So I'm left hanging again.  I have Lyrica for the TN and chest pains, but am under the attention of just my family doctor who says MS and MG are out of his league.  I'm trying not to let this stuff get to me, but am actually feeling rather irritated at the whole situation.

Thank you all for being here.  When things get better (hopefully not worse) I'll be back.

Laura

[dogmum]

Thanks, Deb.  ***hugs back to you***

Laura

[debgen]

Hi Laura,

It was so nice to hear from you again but I really wish it was better news. I am so sorry that you are going through all this. I know how difficult it is to get info  integrated between doctors in different cities, I can't imagine how difficult it is internationally. I hope th Italian MS Society can help you because it sounds like your issues need to be addressed sooner than later!

My thoughts are with you :)

(((gentle hugs)))
Deb

[aspen2]

Taking a break is okay.  There is so much to think about, and the fatigue and cognitive stuff makes it even more difficult.  One thing though -- I ended up being referred back to the same neurologist who had ignored me previously.  He did listen better the second time, still disagreed but was willing to refer me that visit.  I'm thinking you have more history with your doc though :-(.

Be well :-).

[dogmum]

Thanks.  We all have obstacles.  I feel a bit cowardly for hiding from them at the moment, but I need a break.  Thanks for the positive words.  :)

Laura

[Corriel]

Hi Laura, I am relatively new to the forum but I wanted to tell you that you sound very courageous with all of the obstacles that you have encountered. I hope the medical professionals can get out of their own way long enough to provide quality patient care. Please take care!

Corrie

[dogmum]

You're right, K.  I should contact the AISM.  I married an Italian and am here permanently.  The main problem here, however, is the Italian health system.  Now that my records are in the system, no one here wants to step on my first docs' toes by actually trying to help me and they can all read what she wrote and which is completely unhelpful. No matter who my family doc sends me to, they all refer me back to my "assigned" neuro which is a total waste of time.  

I'm giving up for now though and going back to my old operating plan of using the ER as needed and staying away from the whole thing apart from that.  Just don't have the energy to do more than that at the moment.  Thanks for the suggestions and encouraging reply.  

Laura

[aspen2]

I'm so sorry :-(.  Are you in Italy permanently?  What about neurologists in a neighbouring country?  What about the Italian MS Society?  (I googled that -- all in Italian which may be a problem unless you speak Italian -- or at least enough to find the English translation button lol).

Why can your family doctor only refer you to this one team?  

And it's okay to be overwhelmed ... really.  I think there may be message boards at the Italian ms society website -- perhaps you could make connections with someone local there who could give you ideas?

K.

[dogmum]

Hi Shell... My US neuro has some other patients in Europe, but none in this situation, I think.  All are long term patients who come to see him every couple of years to make sure their home country neuro is doing everything right.  My family doc is in a hard place because he can only refer me to one of the local neuros who are the team of docs who don't care.  He knows I need treatment, but just shrugs like it's not his problem anymore.  

Sorry to be so down about this.  I don't want to sound complainy... just really overwhelmed at the moment.  

Thanks again for everything.

Laura

[sllowe]

Hey stranger,

I'm so sorry to hear this - you need to be treated. Do the US neuro have any experience with this situation? You really need treatment :( And, this is unacceptable. If MS out of your docs league then family doc needs to seek a doc to manage this for you.
Nice to see you - your frustrated for good reason.
-shell

[dogmum]

That is definitely true about TN.  I used to go to the ER when the "hug" got bad, now I can pretty much plow through it.  TN has been good for that at least. Thanks for your comments.

[aspen2]

How frustrating for you ... and as one who also has had TN ... I'm so very sorry it's acting up :-(.

The advantage of having TN?  My pain tolerance for everything else is much larger than it used to be ... if TN is a 10/10, nothing else comes close.

Thinking of you ...