[MAT52]

Instead of offering us drugs such as Gaberpentin - which will only ever mask pain at best - why isn't more effort made to establish the causes of all types of neuropathy? Why can't they try IViG on someone like me just to see if it helps as a way of establishing the cause and slowing down the deterioration of nerve damage?

I'm irritated because my latest rheumatology letter states that he is suggesting I try Norotriptyline and Pregabalin but I'm declining. The implication is that it can't be that painful after all. But I've told him that, after several years of severe burning pain my main symptom now is widespread pins and needles with numbness and this spatial issue/ disorientation. If my problem is with my proprioception from lack of sensation (and my diagnosis of SFN is a clinicical one from a neurologist) then how on earth would drugs such as these help me? They aren't designed to modify the neuropathy - only to reduce the pain. My pain has largely burnt out now and I'm left with loss of sensation and muscle weakness/ poor grip, inability to regulate temperature, smell or sweat and an unpleasant taste the whole time. Plus I'm exhausted from having to think extra hard about where I'm walking and not losing my balance if I turn too fast or am crossing roads or faced with changes in floor patterns. How on earth would Pregabalin or Norotryptyline help with this?

The two oral surgeons/ maxilofacial doctors I've seen have both advised me to avoid these type of medications so I will. But I read of friends with OA and RA being offered laser therapy for tendinitis and yet this kind of therapy is never suggested to me for nerve pain/ numbness/ widespread tingle and burn/chill. I just get fed up with doctors shrugging and telling me they will probably never find the cause now so I need to accept that these nerve pain drugs are all they can offer me.

I've tried three already with disastrous consequences. I wish there was some kind of anti static device one could climb into and climb out static free and able to feel steady again.

[stillHoping]

I have been reading your posts and really sorry to hear what you are going through. I have been in the same boat, refused to take Amitrityline for the same reasons. Luckily after a long and frustrating struggle I found a neurologist who was ready to help me get immunological treatment, although I don't have a specific autoimmune diagnosis.
I really hope you would find a better doctor.

[Neuroproblem]

Originally Posted by MAT52

Instead of offering us drugs such as Gaberpentin - which will only ever mask pain at best - why isn't more effort made to establish the causes of all types of neuropathy? Why can't they try IViG on someone like me just to see if it helps as a way of establishing the cause and slowing down the deterioration of nerve damage?

I'm irritated because my latest rheumatology letter states that he is suggesting I try Norotriptyline and Pregabalin but I'm declining. The implication is that it can't be that painful after all. But I've told him that, after several years of severe burning pain my main symptom now is widespread pins and needles with numbness and this spatial issue/ disorientation. If my problem is with my proprioception from lack of sensation (and my diagnosis of SFN is a clinicical one from a neurologist) then how on earth would drugs such as these help me? They aren't designed to modify the neuropathy - only to reduce the pain. My pain has largely burnt out now and I'm left with loss of sensation and muscle weakness/ poor grip, inability to regulate temperature, smell or sweat and an unpleasant taste the whole time. Plus I'm exhausted from having to think extra hard about where I'm walking and not losing my balance if I turn too fast or am crossing roads or faced with changes in floor patterns. How on earth would Pregabalin or Norotryptyline help with this?

The two oral surgeons/ maxilofacial doctors I've seen have both advised me to avoid these type of medications so I will. But I read of friends with OA and RA being offered laser therapy for tendinitis and yet this kind of therapy is never suggested to me for nerve pain/ numbness/ widespread tingle and burn/chill. I just get fed up with doctors shrugging and telling me they will probably never find the cause now so I need to accept that these nerve pain drugs are all they can offer me.

I've tried three already with disastrous consequences. I wish there was some kind of anti static device one could climb into and climb out static free and able to feel steady again.

they cant try harder, because NEUROPathy have so many causes, and some of them are unknown, so there is no base where they can start. Something like a common cause of pn, can be seen as idiopathic because of unusual presentation. so in the end they will randomly throw medication at you, or in some cases they will say you are making it up or looking for drugs to get "high".
you seem to also have autonomic neuropathy. those drugs appears to only mask the pain, not suppress like anti-inflammatory. Ivig is very expensive, which is why there is hesitency, and also it might not work for everyone with pn. it is because neuropathy has so many causes, it hard to point it at "diabetes, sogrens, or some wierd diseases

[MAT52]

Originally Posted by stillHoping

I have been reading your posts and really sorry to hear what you are going through. I have been in the same boat, refused to take Amitrityline for the same reasons. Luckily after a long and frustrating struggle I found a neurologist who was ready to help me get immunological treatment, although I don't have a specific autoimmune diagnosis.
I really hope you would find a better doctor.

Thanks so much stillHoping. I'm trying not to expect too much but I should be seeing a neurologist in a larger hospital with a good reputation and better equipped to test and more acquainted with rare types of neuropathy. Fingers crossed for me and glad you've got your neurologist fighting your corner at last. I still have a 10 week wait to see one as this is the NHS. X

[MAT52]

Originally Posted by Neuroproblem

they cant try harder, because NEUROPathy have so many causes, and some of them are unknown, so there is no base where they can start. Something like a common cause of pn, can be seen as idiopathic because of unusual presentation. so in the end they will randomly throw medication at you, or in some cases they will say you are making it up or looking for drugs to get "high".
you seem to also have autonomic neuropathy. those drugs appears to only mask the pain, not suppress like anti-inflammatory. Ivig is very expensive, which is why there is hesitency, and also it might not work for everyone with pn. it is because neuropathy has so many causes, it hard to point it at "diabetes, sogrens, or some wierd diseases

Neuroproblem I know you are right in your analalsys but I refuse to accept that they can't try much harder to find the cause. After all there are any number of cancers and types of arthritis but they research these like crazy in order to save lives or improve the quality of life for sufferers. So why do they accept that with PN they can say "cause Unknown" so readily or dismiss as a psychiatric issue? I'm clinically diagnosed so presumably they aren't saying its psychological and I'm a pretty rational, healthy living type so all I'm saying is that they should try harder with neuropathy to find the cause because it costs society/ the tax payer if I end up unable to work (as I did last year) because of symptoms or drug reactions. If they tried IViG and it made no difference then this would suggest mine wasn't immune mediated whereas if it worked they could have a more functional member of society who would be costing the tax payer less in other ways. I find it short sighted and frustrating that they bandy around this term idiopathic so readily. Idiotic and pathetic is how it sounds to me!!

[stillHoping]

Originally Posted by MAT52

Thanks so much stillHoping. I'm trying not to expect too much but I should be seeing a neurologist in a larger hospital with a good reputation and better equipped to test and more acquainted with rare types of neuropathy. Fingers crossed for me and glad you've got your neurologist fighting your corner at last. I still have a 10 week wait to see one as this is the NHS. X

Good luck, I hope he would be worth waiting for!

[bluesfan]

Hi Mat52

I understand your frustration. Like you I'm left with no specifically diagnosed cause for my neuropathy but from a process of elimination the most likely one is autoimmune secondary to Addison's Disease. The neuro didn't label it idiopathic - but only because I made it clear before he said it that I wasn't going to accept that label.

I was offered gabapentin but refused (for now at least) - I have reactions to so many meds and like you feel it only masks the pain. Saving it for later if the pain gets really bad. I'm guessing the reason no one even mentioned IVIG to me is that it's extremely expensive and probably rationed (I'm also under a public health system). Knowing my options are limited (I can't take most pain relievers due to them interacting with the essential Addison's meds), I'm starting to look at alternatives - particularly LDN -Low Dose Naltrexone. I'm just starting my research and have a ways to go - including getting it approved by my endocrinologist - but from what I've read so far it looks possible - it's not a cure for PN but a modulator of the immune system which may provide 20-30% relief - that I'd take.

I may already have told you in earlier posts that it is likely your PN is caused by the Hashimoto's - it is very common that even though a primary auto-immune condition is being well managed the secondary condition caused by it (ie PN) does not resolve.

Sorry this doesn't give much hope but stay determined and persevere with the system and hopefully a way to manage your symptoms will be found.

[chris85]

Yes the elusive cause of chronic disease, now that's a tricky one. I'm a medical researcher and I can tell you the body is so complex compared with our understanding. It's good to always look for the cause, but so many times, we just mask or pacify the symptoms. I can tell you for sure I'm glad I started Lyrica because it has helped my sleep and so pain too. These drugs naproxen and Lyrica, they keep life bearable for me, I am happy with that.

[caroline2]

That's what is great about this forum..the doctors don't have time and don't recommend the needed and helpful supplements anyway. Their job is to write scripts...truth.

Same with thyroid help, they don't take time and just go by numbers....we are not numbers, we are symptoms...I've been thru years on the thyroid issue and I'm done...took a lot of my work and support groups to get the help I needed for years.

Everyone has to learn to work on themselves to save themselves and get as healthy as they can. There is plenty of help from dr google and this dr is free. And friends are free too, they want to help us.

[en bloc]

Mat,

It is SO hard to find the cause of neuropathy in some cases. They could literally run tests weekly for a couple years and not be finished checking every possibility. You have to have someone that is committed to helping you, and that, my friend, is hard to come by in today's world. They are so overworked, they just don't have the time to give that sort of attention to every patient. They do what they can in the limited amount of time they are given. It's NOT the way it should be...but it's just the way it is.

I had forgotten about a previous thread of yours that I meant to follow-up...until just now seeing this thread. We were talking about vascular issues, if you remember. I really think this should be given some attention. There are several vascular conditions that can cause (directly or indirectly) neuropathy. Vasculitis for one, and there is another autoimmune condition that comes to mind based upon your 'neurological events' that have taken place. This is APS (antiphospholipid syndrome). Have you ever been tested for this? It's just a matter of a few blood tests (nothing costly or rare). The main one is aCl (anticardiolipin). Other tests are Lupus anticoagulant and Beta-2 Glyco-protein 1 antibody (B2GP1). APS is a clotting disorder and I believe you have mentioned some odd 'neurological events' that may have been some sort of TIA for clotting event. APS is tied to several vascular issues that cause neuropathy. So I think it's worth looking into. But back to the vasculitis itself...has anyone looked into this as well?

I have profound proprioception issues, and I can tell you that typical neuropathy medications will NOT help proprioception. Those drugs are designed to alleviate the pain and some will help with the tingling/buzzing/etc...but that is about it. And they DON'T cure the problem...just help make the patient have a better quality of life. Masking the pain may not seem like the thing to do, but when a cause cannot be found, one must consider every option to at least increase their function and meds that give them some manageability to their life.