check in for those not diagnosed

[baabr]

hi everyone

off to see my pcp to ask for some help with pain/pressure on and around my head; the primary problem is the pain; my head is so sensitive; at times even my hair makes it uncomfortable; it seems to increase with activity

then monday i am off to see the neurologist about my atypical trigeminal neuralgia; this is going to be difficult; trying to breathe and tell myself that he is just another human being on the planet; i ask for assistance/info. etc. just on the atn not on anything else; i mean if he starts getting too much into who diagnosed me etc. I will just say my thing and then leave; at least try to get out the door; instead of just sitting there while he gives his speech;

i am really fired up about this meeting:)

dh and i are going to try to go down the previous day; have a nice early dinner and then he will go someplace while i walk the floor with my anxiety

thinking of everyone

take care
Kris

[cricket52]

Hi Kris:

His job is to treat the TN, not judge you. Good for you for trying not to be traumatized by having to face him. He is not your judge, jury or anything else other than just a person who vowed to first do no harm.

Incidently, studies were released in Montreal this week that shows that children who were abused have altered genetic responses to stress. Made me think about some of us here (including myself).

No wonder some of us react the way we do to doctors who condemn, criticize etc.

Have a good evening with your DH and let us know how it went. We are with you in spirit.

[baabr]

thanks as always cricket for your ongoing support! I remember you going through a traumatic experience awhile ago with a doctor; we have all been there; some of us many times

its a shot in the dark for me with this doctor; i am prepared to deal with this as best i can; the pain etc. the doctor; well i shall use the strength and stamina i have developed over the years that started with the early trauma as you discussed

i do feel that my body took a beating literally and figuratively through the years as i internalized all the junk; poor body; i am trying to develop a kind parent inside myself who will always be there for me no matter what; its helpful

hope you are doing okay
Kris

[cricket52]

Kris:

A study released out of Montreal this week shows that children who are abused are genetically altered as a result - their stress gene is affected.

That certainly would explain many of my symptoms.

My 'internal parent' must have been napping last week - I had my hairdresser put some pink streaks in my hair. One does get tired of white hair after all this snow and no end in sight. :D

[terric]

As Cricket said, no one is your judge. You need help with a problem. I feel bad when someone doesn't take me seriously, but then I tell myself that me 'feeling bad' about something is my problem. If a doc doesn't take you seriously, it's his/her problem...I'd go somewhere else if a doc doesn't take me seriously.

terric

[Whisper]

Hello all,
I'm doing ok, mostly. The past few days I found that my legs and arms are very weak and trembly. Also the fatigue is back...not as forceful at before but when the yawns start, it's naptime for me!

Hope everyone is doing well.
Lorraine:)

[baabr]

oh cricket; too funny; i found i have naturally currly hair now; so i am the new well old shirley temple; maybe next year it will be pink with the white!

thanks terric; I will stand strong; and smile because in the long run guys and gals who act subhuman are a dime a dozen. I know I am special; my dh tells me so:)

sorry whisper about your weakness and fatigue; you had a period there where you were doing okay....i guess we have to live with the ups and downs.

well off to meditate on ups and downs. hugs everyone
Kris

[baabr]

Hey my neuro. appt. went really well! I couldn't believe it; still can't. Of course I did not bring my old records with me and told a fib that I had been diagnosed with ms by mri and spinal tap.

But if I didn't do that they wouldn't take me seriously. And I was just wanting help with my Atypical TN.

And he gave really great info. He said my head sensitivity/pain was most likely related to the ms. He said I was on the highest effective dose of neurontin/2400mgs. He said you just pee out anything higher

He knew about Atn and had attended the last national conference which was a breath of fresh air.

He gave me some lidocaine patches to try and if that doesn't work he wants me to talk with the psychiatrist about switching to Cymbalta. I have been on that but not sure of the dose. He said most of his patients have to be on 60-120 mgs. to see any effect.

Such a breath of fresh air. Problem is he wants another mri! I told him I had one done just two years ago but he said because I am progressing he wants to see a new one done.

I want to continue to see him and I will come clean and just see how it plays out. If he dismisses me then I will at least have gotten some good info. And if he keeps me then I actually have a neuro!

Anyway I just wanted to share some good news for a change; there are docs. out there who are helpful. I think what helped is that he was recommended by the Trigeminal Association. By a patient support group. I think thats the key. You have to find someone that others have seen and report positive outcomes.

So we shall see if these patches work or if I can try and make a med. change./ since I have serious depression issues and am on several antidepressants. but i see my psychiatrist next week!

He also had a nurse practicioner come in first who did the neuro. exam. I like working with them. they are more into patient practicioner relationships and she was very nice which helped to break the ice!

So good news from me!!!! Such a breath of fresh air to have had this encounter. The encounter alone was worth it even if it doesn't pan out in the future.

hope all is well with everyone else
Kris

[Whisper]

Hey Kris,

So glad your appt went well. Let's hope this neuro will give you the help you need. I don't know if telling fibs is wise or not, you'll have to wait to see how he reacts when you tell him. I hope things will be ok.

I'm doing ok. Tired and weakness in limbs, but otherwise ok still. Spent 6 hours in the ER with Hubby last night. His blood-sugar was up and he felt really unwell and had chest pains. He is doing fine now. Thank goodness. Pretty scary stuff. I can only handle one of us being sick at a time...

Here's hoping everyone is having good weeks.

Lorraine:)

[baabr]

that is pretty scary stuff lorraine; glad he is doing better/sorry about your fatigue and weakness

your right about the lie; its just that every time I have an MRI it just shows two tiny lesions; they are in the area that is where ms shows up but thats it for info. and insight; we have just watched the progression and the areas it affected; i heard some people come up with a clean mri; and again my progression has been steady but comes bit by bit

will see what pcp says

just felt we would get the same run around on the diagnosis when i just wanted to focus on the face pain.

well enough justification; i got some good info. and if thats all that comes of it well it was still worth it

Kris

[cricket52]

Lorraine - whew - glad to hear your husband is OK - knowing where you had to go at least makes it easier - good cariologists.

Kris: WHOOO HOOO!!! (Jumping up and down and clapping) Finally - some great news!

[Whisper]

Yes Jan, he's in good hands. In fact, they just phoned and set up some tests for him. I'll rest easier when I know it's all ok!

I understand exactly where you are coming from Kris...I wasn't criticizing you...I just hope the doctor understands why. I think we have to do whatever we need to, to get the care and relief...I am not judging, honest! I think it's great that you got some help and information.

Take care all,
Lorraine :)

[deanne]

Hey Kris maybe you could say you where "of the understanding your ill health was caused by MS,"as other conditions causing your symptoms have been ruled out and no other diagnosis could be given.i mean that is the truth,let the neuro tell you what he believes is your diagnosis first before saying anything.
HI to everyone ,doing well down here.Busy doing my volunteer work helping out the bushfire victims in Victoria,it rained heavily there yesterday so the threat of any fires reigniting is now over.Its so unbelievable over 200 people died and I think 30 are still unaccounted for .
Best wishes to all ,thinking of everyone.

[baabr]

thanks so much for your support! Thats awesome Deanne that you can give of yourself and time; thinking of those affected by those awful fires.

I know you weren't criticizing me Lorraine; I was feeling guilty; but I know that I have to take care of myself; get whatever help I can and Deanne that is a good way to step into the reality of the situation

another thing I thought of was that I wasn't asking for any help with the MS or any meds. specifically; I wrote a note saying my doctors and I were asking for any insight, info. etc. that we could use regarding the atn. he went down the ms path; though I told him I didn't want to do any ms drugs etc.

anyway I will let this rest; I can see I am still feeling bad; always have felt bad when i take care of myself; took care of so many people for so many years and didn't think anything of it; but when it comes to me.....

but thats for my mental health team:D