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Tue Aug 4, 2015, 07:52 AM

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This message was self-deleted by its author (CountAllVotes) on Wed Sep 30, 2015, 07:50 AM. When the original post in a discussion thread is self-deleted, the entire discussion thread is automatically locked so new replies cannot be posted.

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Reply This message was self-deleted by its author (Original post)
CountAllVotes Aug 2015 OP
Downwinder Aug 2015 #1
CountAllVotes Aug 2015 #2
Downwinder Aug 2015 #3
CountAllVotes Aug 2015 #5
mackerel Aug 2015 #18
roody Aug 2015 #4
CountAllVotes Aug 2015 #6
Downwinder Aug 2015 #7
CountAllVotes Aug 2015 #8
Downwinder Aug 2015 #9
CountAllVotes Aug 2015 #10
Downwinder Aug 2015 #11
CountAllVotes Aug 2015 #12
Downwinder Aug 2015 #13
CountAllVotes Aug 2015 #14
Downwinder Aug 2015 #15
CountAllVotes Aug 2015 #16
Downwinder Aug 2015 #17
CountAllVotes Sep 2015 #19

Response to CountAllVotes (Original post)

Tue Aug 4, 2015, 08:38 AM

1. I'm fresh out of suggestions after being thoroughly

dressed down by a neurosurgeon for 20 minutes for not having a primary care doctor.

It sounds like an excellent opportunity. Have you contacted his office? Sometimes they are aware of additional resources. There might be a McDonald's house or some place you can stay. Just don't get locked in any stairwells.

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Response to Downwinder (Reply #1)


Response to CountAllVotes (Reply #2)

Tue Aug 4, 2015, 08:57 AM

3. There is bound to be someone up there

who would like to spend a few days in the City.

They still have the concerts at Sigmund Stern?

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Response to Downwinder (Reply #3)

Tue Aug 4, 2015, 11:01 AM

5. The heat and the fires are keeping people off the roads

Its bad out there and many can barely breathe from the ashes in the air.

I'm in northern Calif. about 90 miles south of the Oregon border on the coastline.

Fairly cool here but still the air is bad.

I'll post again after I call San Fran. to find out when they can see me. It will be very soon, this much I know.

Thanks again!!

P.S. Yes, they still have free concerts and Stern Grove best I know. Haven't been to S.F. in a long time I will admit and not particularly looking forward to it.

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Response to CountAllVotes (Reply #5)

Sat Aug 22, 2015, 12:32 AM

18. Omgee I was just in Chico on Tuesday and you couldn't even see Mt. Shasta

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Response to CountAllVotes (Original post)

Tue Aug 4, 2015, 09:26 AM

4. Post this in California group.

Are you in S. cal?

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Response to CountAllVotes (Original post)

Tue Aug 4, 2015, 07:06 PM

6. Well ...

This is not going to happen for several reasons.

1. I do not think it is safe for me to drive given the condition described above. At present my hands are all stiff and the heat is having a really bad effect on me.

2. There are 75 fires burning throughout the state of Calif. and I don't know which areas to avoid and which areas may have delays on the roads.

3. I called the place up and they wanted me to fax a bunch of old medical records (that I was told had been destroyed when the local neuro. office went to computerized records!!) and the MRI scan I have in my possession which cannot be faxed to them as they are large films. To fax what I have would have cost about $50.00 I think -- not sure.

4. Would cost overall about $2,000.00 to pull this thing off with airfare, renting a car, hotel in San Francisco, food, etc.

5. I am too damn sick to pull it off is my reality.

6. Light at end of tunnel: Contacted my old "aunt" that lives in central Calif. and there is a neuro. that was mentioned close to where she lives and she told me I could have her house 100% at anytime as she trusted me completely. That made me feel kind of good I must admit having no real family left sans an "evil brother" so to speak.

7. Will continue to go to doctor that doesn't write scripts. He can and does provide referrals and he's all I've got for now.

I don't know what else to add except I gave it a shot and it didn't work out but, I'll perhaps get in to see the other neuro. near my foster aunt and hope I can get a referral to see him.

I got real upset looking for those old records from as far back as 1995 and found myself in tears to be honest with you. I wished I was dead it stated in those records and wow, it made me relive that horrible time in my life when I was going down and my whole family was dying at that time as well.

So, hence -- ENOUGH for now. Will pursue this again when the heat goes down and the fires are gone! Not a great time to be traveling, that is for sure.

Thanks everyone that replied!

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Response to CountAllVotes (Reply #6)

Tue Aug 4, 2015, 09:31 PM

7. Understand everything you are going through.

I've been on interferon for 15 years. Keep the films handy, in case they evacuate you to the City from the fire zone.

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Response to Downwinder (Reply #7)

Wed Aug 5, 2015, 05:54 AM

8. Good thing I managed to get/keep all of that stuff

I find it just slightly annoying that they have thrown my chart away! is the matter with these greedy SOB's?

*sigh*

If I didn't have copies of the chart and the original MRI scan in my possession, I realize I'd have no proof that I have this shit!

As for you and the neuro. telling you primary care, primary care ... well I am a very good example of a person that was being treated by the primary care physician only to find out that when it all shakes out, what they want are the records from the neuro. The rest of the recent info. was not wanted.

So, don't let them push you away like they did me!

Thank you for your support!

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Response to CountAllVotes (Reply #8)

Wed Aug 5, 2015, 07:31 AM

9. Perhaps this Fall after fire season

they will still have an opening for you. It is not like the MS is going to go away.

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Response to Downwinder (Reply #9)

Wed Aug 5, 2015, 12:45 PM

10. Eh! They still want me down there!

Just got a call and they are still willing to take me!

I told them I cannot come now due to the fires and the Uhthoff's syndrome (which they'd never heard of of course!).

Anyway, if I mail them my neuro. records I can still get in during Sept./Oct. it seems!

Whadda ya know?

Must need the business ... or maybe they really care. Who knows but will send copies of what I've got to them.

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Response to CountAllVotes (Reply #10)

Wed Aug 5, 2015, 01:19 PM

11. I had never heard of Uhthoff's, but I sure have felt it.

Uhthoff got me arrested on a very hot 4th of July several years ago. But, thats another MS story.

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Response to Downwinder (Reply #11)

Thu Aug 6, 2015, 12:35 AM

12. Progress

Ok, I did it. Managed to get my ancient Lexmark printer to copy the records and I had enough Forever Stamps to post it down to S.F. and got it in the mail before they came by today so, the records are on their way and appt. is right around the corner I guess.

Will see how it goes and what else they may want and take it from there. Got the primary care doctor going too and got a referral to a pain doctor that doesn't care about medical MJ and the like.

Oddly, while doing all of this I found a note from my late mother and it said that she had no control over the M.S. and was extremely lost, confused and upset. That was sort of like a message from above if you know what I mean.

Anyway, progress alas!

I hope you never get Uhthoff's syndrome as it is a very debilitating problem at times as you can likely guess by now.

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Response to CountAllVotes (Reply #12)

Thu Aug 6, 2015, 12:50 AM

13. Your Mother also had MS?

They will probably want her records, if there are any. DNA?

I just did not know the "Uhthoff's syndrome" name.

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Response to Downwinder (Reply #13)

Thu Aug 6, 2015, 11:08 AM

14. Yes my mother had MS

Last edited Thu Aug 6, 2015, 11:47 AM - Edit history (1)

However, I did not find out about it until after she had passed away. She was dx'd in her mid-70s after an automobile accident and had dizzy spells which led to an MRI scan of her brain which showed the M.S.

She never told me about it nor did she follow-up on it. She died about 2 years after this happened.

I was in charge of her probated estate and there were outstanding bills that needed to be paid, one was to the doctor that ordered the MRI scan and that is how I found out about it.

Thanks again to The Greatest Generation or as they are now calling them quite appropriately, "The Silent Generation". Indeed eh?

To make it even more odd, it seems that her grandmother had it as well. My first cousin (still living at 85 years of age) that I found in 2008 has some rather extensive records on the old Indian grandma that died in her late-40s and has in fact written an entire book about that part of my family that I never knew a thing about being my mother was adopted out/sold in 1925 or was it really 1928? Never knew.

Grandma had severe dizzy spells as well and had taken a series of bad falls which led to her untimely demise leaving three little, ones, one of which was my grandmother that I never knew, behind in the same place where this doctor I'm supposed to go to is from strangely which is a well-known city in Louisiana! Grandma had traveled with her husband to the Medicine Mountain it states in her story. I didn't know where this is/was but it seems it is in the same place that the Medicine Wheel is located in Montana!

More about it here: https://en.wikipedia.org/wiki/Medicine_Wheel/Medicine_Mountain_National_Historic_Landmark

Obviously, the long journey from Texas to Montana was a long trip c. 1910 or so. Not sure how they got there but it was likely via their horse named "Old Frank" as I was told that lived to be almost 40 years old my cousin told me.

And the gene was passed down it seems to the women in my family, not that there are many of us, but seems almost all of "us" had "it".






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Response to CountAllVotes (Reply #14)

Thu Aug 6, 2015, 12:51 PM

15. interesting!

I had not heard of MS in genealogical lines. That deserves a study.

From your description I do not believe we are related. I am not aware of MS in any family members, but who knows, we surely had our share of strange ones (self included). Cancers aplenty. I have been blaming it on the Nevada tests.

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Response to Downwinder (Reply #15)

Thu Aug 6, 2015, 01:13 PM

16. The lady the runs the local MS support group

has two sisters that have MS! That makes three in the same immediate family!

More research indeed!

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Response to CountAllVotes (Reply #16)

Thu Aug 6, 2015, 01:28 PM

17. Could be environmental.

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Response to CountAllVotes (Original post)