Starting in Jan '01, I'd get IVIG treatment; condition would improve for
about 2 weeks, then "they'd" make me wait several weeks to get another
treatment. Meanwhile, condition would continue to deteriorate. I'd get
another treatment, and condition would improve again, and I'd hafta wait
several more weeks to get another treatment, etc. Also tried plasma
pheresis for about a year with some improvement but not as much as IVIG.
Also tried retuxan treatments for year and a half with some improvement but,
again, not as good as IVIG, which I would get occasionally during "breaks"
from pheresis and retuxan. All of this time also trying several different
prescription drugs, with no positive results. Such as this went on for
seven years, during which time I kept telling the neurologists that what I
REALLY was IVIG every two weeks. By Nov '06, I was nearly helpless - severe
tremor both hands; unable to tie shoes, turn page in book, button shirt,
write, etc. Finally started IVIG every 2 weeks; in less than 2 months,
tremor was gone completely, hand function returned to normal, and I
assembled a grandfather clock cabinet, performed evapectomy on my MB 124 and
lostsa other stuff. Slight tremor has returned to left hand during last
coupla years and some Parkinson-type tremor has crept into right hand/arm,
but I can still hold pen in right hand and do a signature that looks as if I
went to medical school, i. e., barely legible. ;<) Even filled out a bank
deposit slip yesterday with shaky-looking printing - musta been OK, anyway;
teller took it.
Wilton
----- Original Message -----
From: "Mitch Haley via Mercedes" <mercedes@okiebenz.com>
To: "Mercedes Discussion List" <mercedes@okiebenz.com>
Cc: "Mitch Haley" <mi...@mitchellhaley.com>
Sent: Tuesday, January 03, 2017 6:39 PM
Subject: Re: [MBZ] Wilton?
Wilton can reply (on list or privately to Larry) with the details, but
IIRC the
infusions helped him for a short time, then he had to wait several more
short
times after it wore off to get another treatment, and found no real relief
until
years later when he talked them into giving him frequent treatments.
Mitch.
On January 3, 2017 at 6:22 AM Larry Turner via Mercedes
<mercedes@okiebenz.com> wrote:
Hey Wilton!
I'm glad to hear the Immunoglobulin infusions are helpful. I had 3
infusions when I was 1st diagnosed with CIDP and they were less and less
successful with each infusion. I guess everyone reacts differently to
the disease as well as the treatment? I continue to try to control the
pain which is only partly successful.
Maybe I should get my neurologist to give me multiple infusions
like you get? I guess if that would help, maybe the infusions I rec'd
would have shown more promise?
Have you heard of any other treatments?
Take care - stay in touch -
LarryT
On 01/03/2017 12:05 AM, G Mann via Mercedes wrote:
> Happy New Year Wilton !
>
> Always great to see you.
>
> On Mon, Jan 2, 2017 at 7:33 PM, Dwight Giles via Mercedes <
> mercedes@okiebenz.com> wrote:
>
>> Happy new year to you, Wilton
>>
>> Dwight Giles Jr.
>> 1982 300CD
>> 2005 E320 4 matic
>> Wickford RI
>>
>> On Jan 2, 2017 9:02 PM, "WILTON via Mercedes" <mercedes@okiebenz.com>
>> wrote:
>>
>>> Yep; 'been lurking.
>>>
>>> Indeed, I don't enjoy driving the 320CDI as much as I did my 126 &
>>> 124.
>>> I'm still even a little nervous driving, too, since the accident.
>>> 'Never
>>> had that problem before, neither driving nor flying. 'Don't know how
>>> I
>>> could have been driving any more carefully leading up to the
>>> accident,
>> but
>>> a damned fool ran a red light and hit me, anyway.
>>>
>>> The 320CDI does drive and ride mighty good, though, and has an excess
>>> of
>>> power - almost scary.
>>>
>>> BTW, that's CIDP - chronic inflammatory demyelinating polyneuropathy.
>>>
>>> Enjoyed short phone conversation with Craig. Thanks, Craig.
>>>
>>> Yep, I'll even see if there's a Sondy Tale I've not yet posted.
>>>
>>> Happy new year!
>>>
>>> Wilton
>>>
>>> ----- Original Message ----- From: "Craig via Mercedes" <
>>> mercedes@okiebenz.com>
>>> To: "Mercedes Discussion List" <mercedes@okiebenz.com>
>>> Cc: "Craig" <diese...@pisquared.net>
>>> Sent: Monday, January 02, 2017 8:24 PM
>>> Subject: Re: [MBZ] Wilton?
>>>
>>>
>>> On Mon, 2 Jan 2017 11:16:30 -0600 "Kaleb C. Striplin via Mercedes"
>>>> <mercedes@okiebenz.com> wrote:
>>>>
>>>> Now that I think about it, I don't recalling seeing Wilton around
>>>>> lately. Or did I just miss him?
>>>>>
>>>> I just called him.
>>>>
>>>> He said things are continuing on the same, with him having
>> immunoglobulin
>>>> infusions every two weeks to control his CIPD.
>>>>
>>>> He said his CDI is running well and doesn't have the typical 123,
>>>> 124,
>>>> and 126 problems to take care of, so he has been lurking.
>>>>
>>>> I suggested he might post another Sondy tale. He said he would think
>>>> about that and that he could pass out a few ATTABOYs, too.
>>>>
>>>> He said he didn't like all the computer stuff in the CDI and much
>>>> preferred driving his W124 when he had it before it got wrecked.
>>>>
>>>>
>>>> Craig
>>>>
>>>> _______________________________________
>>>> http://www.okiebenz.com
>>>>
>>>> To search list archives http://www.okiebenz.com/archive/
>>>>
>>>> To Unsubscribe or change delivery options go to:
>>>> http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com
>>>>
>>>>
>>> _______________________________________
>>> http://www.okiebenz.com
>>>
>>> To search list archives http://www.okiebenz.com/archive/
>>>
>>> To Unsubscribe or change delivery options go to:
>>> http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com
>>>
>>>
>> _______________________________________
>> http://www.okiebenz.com
>>
>> To search list archives http://www.okiebenz.com/archive/
>>
>> To Unsubscribe or change delivery options go to:
>> http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com
>>
>>
> _______________________________________
> http://www.okiebenz.com
>
> To search list archives http://www.okiebenz.com/archive/
>
> To Unsubscribe or change delivery options go to:
> http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com
>
>
_______________________________________
http://www.okiebenz.com
To search list archives http://www.okiebenz.com/archive/
To Unsubscribe or change delivery options go to:
http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com
_______________________________________
http://www.okiebenz.com
To search list archives http://www.okiebenz.com/archive/
To Unsubscribe or change delivery options go to:
http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com
_______________________________________
http://www.okiebenz.com
To search list archives http://www.okiebenz.com/archive/
To Unsubscribe or change delivery options go to:
http://mail.okiebenz.com/mailman/listinfo/mercedes_okiebenz.com
