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Unread 11-05-2012, 09:50 AM   #1
susie34
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Default thank you and any advice

hello,first i would like to thank everyone for their help in advance my situation is very upsetting and i am very new to all this,being very healthy at 34 then getting a td vaccine,tetanus and dipheria,after a week i began getting a small fiber neuropathy,auto immune! it has been 9weeks and my neurologist is not being pro active to getting me better!!!! here are my questions,i have read there is no cure just treatments,he has not mentioned ivig treatments and when i tried he snapped and said this will go,i am not doing that to your kidneys!,so is there a time limit to when you can start treatment?meaning if he lets this go to long will i not be able to get the ivig to work?also,he really didnt give me anything to take is there anyone on here who is fighting this naturally and has gotten relief from natural measures?if so what are they?also is there any doctors who specialize and also will admit that a vaccine can cause this in pennsylvania?has anyone gotten a neuropathy from a vaccine,wich one was it? thank you and i am amazed at how drs just dismiss this real and frightening diagnosis! God bless all of you and know that with adversity comes strength!
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Unread 11-05-2012, 04:32 PM   #2
alt1268
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susie,

Welcome to Neurotalk. Just a recommendation, but it worked for me when I found out I don't keep my antibitotis (?spelling) I went and saw an infectious disease dr. Also don't loose faith, there are many neurologist in PA. I would recommend getting a second opionion.

In the meantime, look around the different forums, there is one for autoimmune disorders.
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Unread 11-06-2012, 01:20 AM   #3
Darlene
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susie,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Click on the following forum, there you will find a large group of friends to assist you in your need.

Peripheral Neuropathy:
http://neurotalk.psychcentral.com/forum20.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.


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Unread 11-07-2012, 09:20 PM   #4
Rrae
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Smile Hello Susie!

Welcome to NT!

You've come to a GREAT place for support and understanding!

People here are very caring and down-to-earth, which makes it easy to just relax and 'be'.

Make yourself right at home, surf through the other forums and post wherever you feel inclined. Just holler if you have any questions or need help in finding your way around!

It's great to have you!

Caring,
Rae
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Unread 11-09-2012, 09:01 AM   #5
Jenn M
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I too am a newbie, I introduced myself last night but in wrong spot I think. and I too had that vaccine a couple weeks ago!!!!! was hospitalized with severe vertigo since then. the neuro doc insists that it is MS and not from vaccine because I have old lesions and that out just triggered it but I am skeptical. I have an apt. in an hour. not sure what to do. I want to try going on antibiotics?? keep me posted!!!!!
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Unread 11-09-2012, 10:20 AM   #6
ginnie
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Default Hi susie

Welcome to Neuro Talk. I am sorry to hear about the auto immune problem. Your doctor should have had more compassion. Maybe it is time to move on and find some good doctor who can help you to heal. There is always hope Susie. I found a Physiatrist. This specialty treats for pain AND the whole body on a cellular level. she did more for my PN or RSD than any other doctor. I take B12 shots, and that has helped. I also have a lotion that has a number of ingrediants, that helps with pain. I did not get this from shots, but from surgery. There has been dicussion on this subject of injections, and adverse effects on this site. More folks will jump in to try and help you. I also have auto immune problems, from a virus, and epson Barr. I went to Mayo clinic for DX. A teaching hospital is also a good place to try, more heads get together to try and help. Keep your spirits up. NT will be here for you. ginnie
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Unread 11-09-2012, 02:16 PM   #7
Dlala
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Hi, I could sure use some help, advise, support, or whatever. I am a 61 year old female & have had peripheral neuropathy for 20+ years, along with a pluthera of other conditions, the most troubling being fibromyalgia. I have been to numerous doctors, had numerous tests, and although all my NCS have shown increasingly severe peripheral neuropathies, the cause has never been determined. Within the past 4-5 weeks, I have started with a new neurological group, had numerous blood/urine tests including GTT...all negative. I have an excellent pain management doctor, now have my 3rd implanted spinal cord stimulator, the list goes on & on, and the twitches/tremors/spasms have been virtually ignored by these new doctors. Although 1 of the doctors suggested I be tested by anti-mag & LP, the other said it was Hereditary Neuropathy, and no further testing is needed. I cannot find any info on Hereditary Neuropathy and wonder if anyone has any information, suggestions, advise, etc. I received this latest DX yesterday...I am frustrated, upset, angry, scared, emotional & just don't know what my next step should be. Just a friendly note would really be appreciated...Thanks!!!
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Unread 11-09-2012, 02:25 PM   #8
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Quote:
Originally Posted by Dlala View Post
Hi, I could sure use some help, advise, support, or whatever. I am a 61 year old female & have had peripheral neuropathy for 20+ years, along with a pluthera of other conditions, the most troubling being fibromyalgia. I have been to numerous doctors, had numerous tests, and although all my NCS have shown increasingly severe peripheral neuropathies, the cause has never been determined. Within the past 4-5 weeks, I have started with a new neurological group, had numerous blood/urine tests including GTT...all negative. I have an excellent pain management doctor, now have my 3rd implanted spinal cord stimulator, the list goes on & on, and the twitches/tremors/spasms have been virtually ignored by these new doctors. Although 1 of the doctors suggested I be tested by anti-mag & LP, the other said it was Hereditary Neuropathy, and no further testing is needed. I cannot find any info on Hereditary Neuropathy and wonder if anyone has any information, suggestions, advise, etc. I received this latest DX yesterday...I am frustrated, upset, angry, scared, emotional & just don't know what my next step should be. Just a friendly note would really be appreciated...Thanks!!!
Welcome to NeuroTalk:
This is our link to hereditary neuropathies.
http://neurotalk.psychcentral.com/thread121564.html

We also have some members on the PN forum...so do please look there also.

http://neurotalk.psychcentral.com/forum20.html

Hereditary neuropathies lead to muscle wasting and debility.
Google Charcot Marie Tooth and select images, and you will see what the lower legs look like with this.

Did you get a B12 level done? Do you know the numbers? Doctors say "normal" when they are actually low, because lab ranges in US have
not been changed to reflect the newer therapeutic protocols. So if you are below 400 US units (pg/ml) you need to start supplements ASAP.
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Unread 11-09-2012, 04:33 PM   #9
Kitt
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Hi Dlala, Lower legs can also look normal. The same with the feet. You can have high or low arches or normal ones. Or one flat foot and one high arch. It depends on the type of CMT and the muscles affected. Symptoms vary greatly even within the same family. CMT is very complicated and there are very, very many types and subtypes of it. Family history is also helpful in a diagnosis. And also DNA blood testing (very expensive) thru Athena Diagnostics.

I hope you get an answer.
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"It is what it is, it's not what it was, it's not what it could have been, it is what it is."

Charcot-Marie-Tooth Syndrome (CMT) The Curse.

AKA Hereditary Motor Sensory Neuropathy (HMSN).

"I was once like you and you will be like me."

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Unread 11-10-2012, 01:15 AM   #10
Darlene
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Jenn M & Dlala,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.


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