Continuing assessments?
 

I was wondering if anyone has repeated assessments after the initial diagnosis of PN?

My husband was diagnosed with small fibre symmetrical sensory polyneuropathy which progressed to large fibre and some motor. I suspect he also has some autonomic.

I would like him to get a complete/new work up done since it has been 12 years since the initial diagnosis.

He is of the opinion "why bother, there is nothing they can do except help with the pain" - would we be wasting our time to push for a new neurologist appointment?

I wondered if now this has progressed they might be able to pinpoint a cause - it is currently classed as idiopathic.

Thanks, Linda

I personally don't think it would be a waste of time after 12 years, especially if he goes to a different neuro. He may not learn anything new, but what if he did and he could be rid of the beast.

I'm also idiopathic, and it's coming up on two years since I last saw my neuro and gave up. I'm contemplating giving it another go, either with a new neuro (maybe one at Hopkins), or a completely different kind of doc.

7 Months In
 

I agree - we just can't give up trying to find a cause. I had sudden onset of polyneuropathy after many years of very mild toe tingling. I met with a neuro who said that Guillan Barre - or some form of the condition is the number one cause of idiopathic PN. And, that the markers for the disease don't show up in blood serum or in spinal fluid after the acute period. So, if you are not tested in the first 4 to 8 weeks you likely will not have abnormal levels to get a diagnosis of CIPD or CIP or any of the alphabet soup of related neuro diseases.

My only abnormal tests are two EMG's for the Idio PN diagnosis. Two neuro's are just taking their time, but this new Neuro is willing to give me IVIG. He is not certain that it will help at this point. I should have had the treatment initially, but I was told to "come back in a year" by the first Neuro that saw me after the abnormal EMG.

Fingers are crossed - my symptoms are full body and I'm on heavy meds to control pain - especially in legs. I walk at around .0001 mile an hour ... this has been life changing and not in a good way.

BUT - I'm not going to accept this ... I'm going to keep trying! I hope the IVIG will work even tho it's late in the game.

Thank you both for your input.

He had all the normal burning/tingling/shooting pain which started in his feet and legs and has now progressed to his hands. He is on heavy medication for that (Fentanyl). He does take the recommended supplements.

Initially all blood work was normal. In 2009 his C-Reactive was 9 with a glucose tolerance test of 9.1. All further Glucose tests have been normal with the last one 6 months ago being 5.6. I'm not sure anyone has tested the C-Reactive again.

In 2012 he was diagnosed with ventricular tachycardia caused by low blood volume, quickly followed (a month apart) by sleep apnea and almost non existent thyroid levels. He is on meds for that.

He frequently gets dizzy on standing or bending over, and sweats profusely on his upper body while doing nothing, even in Winter.

He also periodically gets areas of a weeping rash on his lower legs which about 10 years ago was diagnosed as "an allergy"? Cortisone cream seems to clear it up, and he is left with a dark area almost like a bruise where the rash was. He doesn't "heal" well - had an abscess which he was eventually hospitalized for because it would not heal.

He has never had an EMG or spinal fluid test to my knowledge.

I'm definitely going to push him to see another neuro and ask for specific tests based on the information we have gained from this terrific site.

Linda

He's lucky ...
 

In spite of all of his health issues your hubby is very lucky to have a caring wife like you. Keep trying to convince him to keep going ... there is help out there, we just need to find it. Best!

Thank you. This "monster" affects so many people, not just the patient:)

Linda