I have same symptoms as you without loss of taste or smell.
I do have numb lips for 11 yrs now,cause unknown.
Started with first set of symptoms many yrs ago.
No one knows why, very frustrating.
I have same symptoms as you without loss of taste or smell.
I do have numb lips for 11 yrs now,cause unknown.
Started with first set of symptoms many yrs ago.
No one knows why, very frustrating.
Will send her an email and I may see her on Thursday. As far as I know she needs to have monthly infusions forever as that is how IVIG works, but I know she had substantial relief in the first two days of her first infusion. It is idiopathic SFN and I think that the abnormalities were in the EMG and skin biopsy. There is a trial which I think is still recruiting right now at Brigham and Women's in Boston. You can contact Dr. Oaklander at MGH for information, not sure when they will be done recruiting.https://www.google.com/search?q=doctor+oaklander+MGH&oq=doctor+oaklander+MGH&aqs=chrome..69i57j0.12978j0j4&sourceid=chrome&ie=UTF-8
The IVig infusion is not a pain killer, it is a treatment. The antibodies build up over time and slowly work. Neuropathy can only be treated, not cured. So, if if your Neuropathy does not get worse, I consider that an improvement. You need to do it for several months and the neuropathy might not be as bad and should not get worse.
I do a multi-faceted approach and am doing so much better than 3 years ago.
JFN
I’m not sure why I’m here. I do have PN, but I recently saw an allergist/immunologist & he brought up this as a treatment. But he didn’t say much about it beyond it was an infusion that might help. Blood tests showed abnormalities, low in more than one area of IgG.
I guess I’m curious about when the treatment is used: what conditions it treats. Things like that. I don’t expect a response, but I don’t trust just surfing the internet for medical advice .
The IVig infusion is not a pain killer, it is a treatment. The antibodies build up over time and slowly work. Neuropathy can only be treated, not cured. So, if if your Neuropathy does not get worse, I consider that an improvement. You need to do it for several months and the neuropathy might not be as bad and should not get worse.
I do a multi-faceted approach and am doing so much better than 3 years ago.
JFN
Thank you, Harley22 for that common sense testimonial. I finished my 5 days a couple of weeks ago with no noticible improvement. Now I know to not give up. (Not that giving up was really an option.) Also, I would like to ask a question: Are there any PN's out there without the usual numbness/pain complex? Just balance problems? My lack of symptoms has made it difficult to be diagnosed. Additional input would be helpful.
I’m not sure why I’m here. I do have PN, but I recently saw an allergist/immunologist & he brought up this as a treatment. But he didn’t say much about it beyond it was an infusion that might help. Blood tests showed abnormalities, low in more than one area of IgG.
I guess I’m curious about when the treatment is used: what conditions it treats. Things like that. I don’t expect a response, but I don’t trust just surfing the internet for medical advice .
rowun4
I have common variable immune deficiency which is a primary immune disease. I had very low IgG that caused me to have many severe infections throughout most of my life.
Before my insurance pays, the monthly cost of my daily infusions is over $17,000 dollars and not all insurance companies pay for this. I had to change insurance coverage because the insurance I had previously would have left me paying a few thousand a month. It might be a good idea to check and make sure that the insurance that you have would pay for it. Some insurance companies leave you paying for 20% which can end up being a lot of money.
Did your doctor give you an actual diagnosis? If you are able, maybe you should go back to your doctor and ask him if he can tell you a little more about your low IgG blood work. I am not familiar with Immunoglobulin being used for neuropathy so someone else on this site will have to inform you about that.
I hope that you can find something that will help you.
What are CLT & shockwave?
( I swear I live in a wasteland when it comes to medical care). I’ll try finding it, but expect to hit some really crazy info.
Thanks!!!
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Forgot to mention I had IVIG infusions also and they did nothing for me so my doc stoped them.
Just got done my 3 days of infusions
I haven't noticed that much improvement
Hello could you please ask your friend to e mail me aa
I am considering IVIG ,
Many thanks
@harley22
Hi,
The IVig infusion is not a pain killer, it is a treatment. The antibodies build up over time and slowly work. Neuropathy can only be treated, not cured. So, if if your Neuropathy does not get worse, I consider that an improvement. You need to do it for several months and the neuropathy might not be as bad and should not get worse.
I do a multi-faceted approach and am doing so much better than 3 years ago.
JFN
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2 ReactionsI’m not sure why I’m here. I do have PN, but I recently saw an allergist/immunologist & he brought up this as a treatment. But he didn’t say much about it beyond it was an infusion that might help. Blood tests showed abnormalities, low in more than one area of IgG.
I guess I’m curious about when the treatment is used: what conditions it treats. Things like that. I don’t expect a response, but I don’t trust just surfing the internet for medical advice .
I know IVIG is not a pain killer, my neurologist told me it should help with the pins and needles I’m having in my feet.
Thank you, Harley22 for that common sense testimonial. I finished my 5 days a couple of weeks ago with no noticible improvement. Now I know to not give up. (Not that giving up was really an option.) Also, I would like to ask a question: Are there any PN's out there without the usual numbness/pain complex? Just balance problems? My lack of symptoms has made it difficult to be diagnosed. Additional input would be helpful.
@rowun4 @harley22
It might help, it does not work immediately, patience, diet, and exercise. I also have used CLT and shock wave.
JFN
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1 Reactionrowun4
I have common variable immune deficiency which is a primary immune disease. I had very low IgG that caused me to have many severe infections throughout most of my life.
Before my insurance pays, the monthly cost of my daily infusions is over $17,000 dollars and not all insurance companies pay for this. I had to change insurance coverage because the insurance I had previously would have left me paying a few thousand a month. It might be a good idea to check and make sure that the insurance that you have would pay for it. Some insurance companies leave you paying for 20% which can end up being a lot of money.
Did your doctor give you an actual diagnosis? If you are able, maybe you should go back to your doctor and ask him if he can tell you a little more about your low IgG blood work. I am not familiar with Immunoglobulin being used for neuropathy so someone else on this site will have to inform you about that.
I hope that you can find something that will help you.
What are CLT & shockwave?
( I swear I live in a wasteland when it comes to medical care). I’ll try finding it, but expect to hit some really crazy info.
Thanks!!!