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Board: Neuropathy 04-07-2013, 10:02 AM
Replies: 5
Views: 292
Posted By daisymaegrl
Re: Daisymae

Hi June
I replied to your earlier post before I even saw this one!!!
Thanks so much for thinking of me.
My feet are just as bad a always but the addition of a Fentanyl patch has really turned my...
Board: Neuropathy 04-07-2013, 09:54 AM
Replies: 3
Views: 344
Posted By daisymaegrl
Re: IVIG treatment concerns

Hi June,
I haven't posted in a while either, I hope that you are doing ok!!
Are the IVIG treatments helping, other than the red spots? It has been mentioned in passing as something I could...
Board: Neuropathy 10-25-2012, 10:23 AM
Replies: 5
Views: 583
Posted By daisymaegrl
Re: Sjogrens,Sialogram,Strength Test, Imuran, Butrans

Hi June,
When I started Methotrexate, the list of possible side effects were unbelievable. I mean, it was so scary that I was petrified- hair loss, liver problems, mouth sores, nausea etc. But I...
Board: Neuropathy 10-24-2012, 05:34 PM
Replies: 5
Views: 583
Posted By daisymaegrl
Re: Sjogrens,Sialogram,Strength Test, Imuran, Butrans

Hi June
I really understand your dilemma!! I was tested for MS, it was a CT scan of my brain that didn't show any white spots.
I still have questions about whether I may have lupus too. I have...
Board: Neuropathy 10-22-2012, 06:32 PM
Replies: 5
Views: 583
Posted By daisymaegrl
Re: Sjogrens,Sialogram,Strength Test, Imuran, Butrans

Hi June
I really don't know much about Imuran, but I have been on an chemotherapy drug, Methotrexate, for 15 years to keep my immune system down. It has has helped me for years.
It's side effects...
Board: Arthritis 09-18-2012, 07:55 PM
Replies: 1
Views: 301
Posted By daisymaegrl
Re: Methotrexate

Hi
I have been on this med for probably 12 years or so. My LFT's have always been normal until six months ago when my Alk started creeping up. Now the others have crept up to just slightly out of...
Board: Neuropathy 09-04-2012, 06:38 PM
Replies: 5
Views: 923
Posted By daisymaegrl
Re: Trying a patch called BuTrans for chronic pain?

Hi June,

Did you change to the patch because the morphine wasn't working for you or was it something else that made you switch? I found that morphine didn't work at all for me either. Hopefully...
Board: Neuropathy 08-17-2012, 09:41 PM
Replies: 4
Views: 602
Posted By daisymaegrl
Re: :rolleyes: my journey continues

Hi June
I feel for you, I truly do!!

Is there some medication that you are taking that might be giving you such dry eyes?
I really hope your doctor can solve this for you!!

I personally am...
Board: Neuropathy 07-26-2012, 12:21 AM
Replies: 8
Views: 1,037
Posted By daisymaegrl
Re: Had EMG/NCT Today and...

Hi nola
My neuro referred to gabapentin as "electrical tape for the nerves" I really liked that explanation as that is exactly what I felt I needed. Unfortunately I could not take gabapentin. For...
Board: Neuropathy 07-12-2012, 04:33 PM
Replies: 16
Views: 1,454
Posted By daisymaegrl
Re: For those who have PN

Hi nolalore,
I started having neuropathy symptoms in 2005, but it took until 2008 to finally get a diagnosis. I saw 2 neurologists and 2 rheum's. I had previously been diagnosed with rheumatoid...
Board: Neuropathy 06-21-2012, 07:08 PM
Replies: 5
Views: 1,427
Posted By daisymaegrl
Re: living with neuropathy

Hi cocoa
I have had exactly the same symptoms for 8 years now.
I have tried all of the things you have tried, as mine is so much worse at night. I went thru a number of different narcotics but...
Board: Neuropathy 06-21-2012, 06:55 PM
Replies: 7
Views: 1,107
Posted By daisymaegrl
Re: Change in diagnosis

Hi June,
Wow, I can't believe the change in your doctor. But I am happy that he apologized and explained about the results. It is hard to start all over with a new doctor!

I have had SFN for 8...
Board: Neuropathy 06-15-2012, 09:48 PM
Replies: 1
Views: 764
Posted By daisymaegrl
Re: sharp in pain heel of my foot?

Hi catlady
THis sounds like plantar fasciitis to me. It can be a bear to get rid of, but your doctor can help with some solutions. It was imperative for me to get a pair of shoes that had a...
Board: Neuropathy 04-30-2012, 08:40 PM
Replies: 3
Views: 841
Posted By daisymaegrl
Re: update on IVIG

Hi June
I echo tingles, and thank you for keeping us up on the treatments. I sincerely hope you are feeling better and things are not as bad!! I am sure you weren't looking forward to the second...
Board: Neuropathy 04-23-2012, 06:10 PM
Replies: 4
Views: 905
Posted By daisymaegrl
Re: Finally a Diagnosis

Hi Tingles
Thanks for you caring post!
In the past I have tried Lyrica, Cymbalta, neurontin, Topomax, Elavil, and many other anti epileptics and anti depressants. So many I have lost track!
I had...
Board: Neuropathy 04-17-2012, 08:34 PM
Replies: 4
Views: 1,043
Posted By daisymaegrl
Re: Sharing general Info about Neuropathy.

Hi Stargrave,
This is a great post!! You are oh so right about the fluctuating realities of nerve problems!
Thank you for collecting the info and writing it out so concisely!

June: I wish you...
Board: Neuropathy 04-13-2012, 11:50 PM
Replies: 4
Views: 905
Posted By daisymaegrl
Re: Finally a Diagnosis

Hi June
Congratulations on finally getting a diagnosis!! I am sure it isn't one that you were hoping for, but at least you have a starting point.

The doctor feels that my neuropathy is related...
Board: Neuropathy 03-18-2012, 06:42 PM
Replies: 1
Views: 910
Posted By daisymaegrl
Re: MRI interpretation, polyneuropathy

Hi there,
I am so sorry to hear of your suffering! I am not experienced in MRI's, but if you post on the Pain Management board, there is some one there who can help you I am sure.
Just a...
Board: Neuropathy 03-18-2012, 06:37 PM
Replies: 3
Views: 941
Posted By daisymaegrl
Re: Peeing Question?

Hi, there is autonomic neuropathy, which is a form of peripheral neuropathy, that can cause problems with bladder function. It might be best to discuss with your doctor as it can cause problems with...
Board: Neuropathy 03-12-2012, 08:24 PM
Replies: 5
Views: 1,438
Posted By daisymaegrl
Re: Electrical Shock Pain!!

I am so sorry June that you are in such pain!! I know of one other woman that had such bad reaction to the punch biopsy too.
I really don't know what to say other than to lend my support.
It is a...
Board: Neuropathy 03-10-2012, 09:20 PM
Replies: 4
Views: 1,736
Posted By daisymaegrl
Re: Frozen toes

Hi June
It is that attitude the appalls me!! There is nothing funny about the suffering of those of us with neuropathy!! And I would have done exactly as you did, gone to the ER!
I have...
Board: Neuropathy 03-09-2012, 09:25 PM
Replies: 4
Views: 1,736
Posted By daisymaegrl
Re: Frozen toes

Hi, I would love to know the answer to this too! Mine have become more and more immobile but no one can answer me why. I have RA and SFN, and see both a neurologist and a rheumatologist. But no one...
Board: Neuropathy 03-05-2012, 08:35 PM
Replies: 4
Views: 472
Posted By daisymaegrl
Re: in need of support

Hi Michael and tingles
This is such crazy thing, this SFN!! Mine was opposite to yours- mine started with the burning, electrical flashes, constant buzzing feeling. Then came the cramping. Oh...
Board: Neuropathy 02-21-2012, 06:29 PM
Replies: 1
Views: 879
Posted By daisymaegrl
Re: Nerve cutting surgery

Hi lunacy
Can you explain more about having the nerves cut in your legs?? Do you have peripheral neuropathy or something else??
Wow, that seems like a pretty radical thing to have done. Have you...
Board: Neuropathy 02-20-2012, 06:33 PM
Replies: 16
Views: 5,087
Posted By daisymaegrl
Re: Small Fiber Neuropathy - Please help/respond

Hi Heather
I hope your appointment goes well! I am sorry that I didn't explain that my SFN has been deemed related to my Rheumatoid arthritis. The second neuro I saw just said it was autoimmune...
Board: Neuropathy 01-12-2012, 01:30 AM
Replies: 2
Views: 790
Posted By daisymaegrl
Re: PN going up legs?

Hi Michelle
I know what you mean about the good days and the bad!
I have PN for 7 years now, started in my feet. But the neuro did warn me that is was possible for it to progress. Mine has moved...
Board: Pain Management 11-26-2011, 09:19 PM
Replies: 1
Views: 1,375
Posted By daisymaegrl
Re: possible lyrica side effects?

Hi brainpain!!
Welcome back!! It has been SOOOO long since you have posted!
You always were an invaluable wealth of information and I am happy that you are posting again.
But I am so sorry that...
Board: Neuropathy 11-22-2011, 08:21 PM
Replies: 10
Views: 1,424
Posted By daisymaegrl
Re: WHAT THE HECK "p n why do we have to chase "

Hi ivp and risingParrot

ivp, your story sound very similar to mine and risingParrot, my neuropathy has also started "to climb".

The frustration is unbelievable! I really am sorry that are...
Board: Neuropathy 08-26-2011, 09:39 PM
Replies: 113
Views: 35,887
Posted By daisymaegrl
Re: I have SFN-Do You?

Hi Capewind,
Ruby is right, we did learn a lot as a group sharing what we knew about neuropathy. I am so sorry you are suffering. Not much seems to have been done in the way of research about this...
Board: Neuropathy 07-24-2011, 08:45 PM
Replies: 4
Views: 969
Posted By daisymaegrl
Re: HELP...need info!

Hello bishop!
So sorry to hear that you are suffering so much! I have exactly the same symptoms you have, and have had them for over 6 years now. I am pre-diabetic and diagnosed with small fiber...
Board: Neuropathy 12-09-2010, 07:32 PM
Replies: 3
Views: 985
Posted By daisymaegrl
Re: New to sfn

Hi ppage58
Welcome to our little group of SFN'ers! I have had it for over 6 years now. I have tried all of the medications you have listed and many, many more. I am now on Dilaudid for the pain,...
Board: Pain Management 12-07-2010, 04:14 PM
Replies: 3
Views: 733
Posted By daisymaegrl
Re: Just got back from 2nd accupuncture appt.

Hi mom,
i just had to reply as I have had such a positive acupuncture experience as well! I have arthritis, fibro and small fiber neuropathy in my feet that brings a burning relentless nerve pain...
Board: Neuropathy 12-02-2010, 05:14 PM
Replies: 7
Views: 2,374
Posted By daisymaegrl
Re: I need advise with periphreal neuropathy pain

Hi Sharper2004
I know exactly how you are feeling! And I really feel for you!
My neuro told me that it is so important that we never ever go barefoot.She also recommended Birkenstocks as they have...
Showing results 1 to 33 of 33

 











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