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Posted 7/22/2010 6:48 PM (GMT 0)
well I said that my new pain doc wanted me to see a neurologist and had been hesitant, not that I didn't want to go through that again because I'd already seen neuro for 2 years and was passed along before. I was afraid of getting my hopes up. She would have been doctor number 16 in this 10 year battle to find some help. After much thought considering the pros and cons i bit the bullet and went thinking "maybe this time."...well i went for my second appointment with her after she got what she could of past records ( the primary teaching hospital that I went to for 5 years told her they had no records of me!!!! WHAT??????..)
wELL FOLKS , IT HAPPENED AGAIN, she said there was nothing she could do for me, stop taking the med she had prescribed. All those positive hopes I was trying to hang to were once again flushed. another 2 months and $200 for nothing. She did give me the name of ANOTHER doctor I could go to who is suppose to be the "headache god". Hes' in Michigan, I'm in Illinois. Then I can come see her again in 3 months.
My dear friends..what do you think? Again I ask, when do we have the right to say "enough" without being called a quitter? I don't know if others who are not in this situation can understand how much trying to keep up hope can be so devistating when once again that hope is dashed.
The only recourse I have now is to continue with the new pain med ( who wasn't going to make a follow-up appointment with me until she knew which way neuro was going). Now I am worried that she will say she can do nothing.
I am so very tired of this pain and of trying to have hope.I just don't have the strenght to "keep on keeping on", ya know?
I so desperately wish you all better days. I am at the end of my rope. If this is some kind of karmic payback I must have really done somone wrong!!!
catahoula
Posted 7/22/2010 9:26 PM (GMT 0)
Oh Cat , I'm so sorry , I can sense your frustration and its just so unfair sometimes . Its very draining to keep getting your hopes up and then not get the results you desire , I've expierenced this to a degree myself and your right its no picnic thats for sure . Give yourself some time to accept this last dissappointment , do you see a therapist where you can talk out your frustation with this ? I think addressing the emotional side of this would help you a lot . Good luck friend and please try to stay positive , we never know what tomorrow holds . Mikel
Posted 7/22/2010 9:27 PM (GMT 0)
Dear Catahoula,

I don't know what to say except that I am so sorry that it turned out this way again for you! I know that it is so difficult when you allow yourself to be hopeful and then have it fall apart again! I can really relate right now!!! Waited for weeks to get into the rheumy...drove 3 1/2 hours to get there and now I am more lost and confused then before I went!! I keep feeling the same way.....like I must have been somebody really terrible in a past life or something!!

Just know that we all care very much and we are here for you trying to give you the strength to keep going!!

Take care of you!
Hugs,
Beckey
Posted 7/23/2010 4:35 AM (GMT 0)
 

Dear Cata,

     I sure am glad to hear from you *hugg* I had hoped that no news, was good news. I am terribly sorry that isnt the case. I sure hope though, that aside from the terrible developments from the neuro, that everything else is going okay? How are you doing?

     I sure am sorry to hear about the neuro. I was sure this time that you would get some much needed help. Did the neuro run any tests atall? Are you sure your current doctor will want to stop medication? I cant imagine why you would need to stop your meds. IS 3 months from now a follow up or is it to refil meds? Sorry if I am asking annoying questions, I am just having a kinda hard time understanding. I dont see why you would need to stop your medication, especially if it is helping. Alot of times there isnt a clear answer as to why there is pain, but it doesnt change the fact that you are still in pain. Just because the neurologist was unable to pin point the problem, doesnt mean that you dont need treatment. You still need help and you still need your medicines.

     I hear what you are saying about this "Headache specialist" in michigan... but to travel that far for treatment sounds like they are asking way to much of you. To have the expectation to travel that far and the expenses of such travel is.. rediclious. Of course though, if it is something you truly want to do.. I am behind you 110%!! I just worry this is an expectation placed by the neurologist, not something you want to do for can afford.

     I really hope you are able to relax at some point tonight. I can only imagine after the day you have had, you must be exhausted and tired to your very core. You are in our prayers here. Hang in there!!!!

*HUGG*
  dani 

Posted 7/23/2010 5:41 PM (GMT 0)
Hi Dani-
no, neuro didn't do any tests. She just wanted results from all the other MRI's and CT's I've had over the years but for some reason the hospital told her they have no records from me!!!! I have all the films but over the course of the other 15 doctors, the reports are gone, even if I asked them to make a copy, the docs just put them in their files. She can't order a new MRI because I have that silly supraorbital nerve stim in my head so no more MRI's for me. ( another reason to seriously consider before having such an implant done!) Now I have to try to backtrack all those other doctors who may have swiped the reports and see if any of them still have them in my records IF they still have records on me.
It was Neuro who said to stop taking the Nadalol she ordered because it made no difference. The appointment in 3 months is suppose to be a follow-up after I see this new doc in Michigan. Well I just can't go to Michigan. I still have thousands of $$ in med bills from all the other "headache gods" I have seen to no avail. I really don't see a point in keeping that follow-up with her unless by some miracle I can track down old records.
I don't see the pain doc for 2 weeks but she was reluctant to make any changes until she knew what plans Neuro had. Well I guess since Neuro has no plans its all up to her BUT last time I saw her she was at the point of "I don't know what to do."
Its just so hard to try to keep hope alive when all one gets is disappointment after disappointment. Why would I assume this "headache god" in Michigan is any smarter than the other 15 doctors I've seen? I tried to look him up on the internet and could not find a listing for him, even after goggling his number she gave me!
'I really am at wits end and don't know what to do anymore.
thanks for being there
catahoula
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