I've just been diagnosed with this but have no other information. Can anyone help me with this? I've looked online to see what I can find but nothing seems to fit...

Many thanks!

Perhaps this site will help.

http://www.athenadiagnostics.com/con...ral-neuropathy

Ask your doctor/neurologist for an explanation as to what it is or as to what he/she thinks it is. It can be due to many things. Family history might be something to look into as well. Good luck!

Hi Kitt,
Thanks for your kind response. I did check out the site you gave a link to and found myself even a bit more confused. I will ask for an explanation from my consultant today. Whatever the outcome, I have a bit of trepidation about the treatment if, what athenadiagnostics shows it is. Is the treatment worse than the condition? I'll let you know what I find out.
All the very best and thanks, again.
Jean

I promised to let you know more and this is what I've found out today.

I saw the consultant today and we discussed how we would go forward. I've been given a bit of a respite as investigations are still ongoing. They have to look into 3 things, in this order: genetics, paraprotein and inflammatory.

What this means is that I will have an appointment with a geneticist who has a special interest in demyelinating neuropathies. She will start by ruling out genes that could provide an answer as to what treatment, if any, is pursued. Initially, she will look at the PMP22 gene. If this is ruled out, she has many more to exhaust. In the worst case, this investigation could take 5 months or more.

At the time I see the geneticist, I will also have a blood test to see if I have an abundance of paraproteins present. If it is positive, that suggests a different form of treatment. If it is negative and the genetics are negative, we will then look at inflammatory issues.

My consultant wanted me to focus on the first two for now. If we have to cross the bridge of inflammatory issues, we will but he is hopeful one of the first two will tell us what we need to know. If we go there, we will start with Prednisone and IVIg therapy (immunoglobulin therapy). I see him again in 4 months (June 19).

So, we are where we are and we know very little more than before. I am researching as much as I can and, as I find out more, I'll keep everyone informed.

Please don't be shy! If you have any information you think might be helpful, please do let me know... the internet is a huge beast and I may not find what you are looking at.

Thanks everyone!

Hi,

When you mentioned the PMP22 gene it rang a bell. A person who has CMT type 1A has a duplication of it. If there is a deletion then that would indicate HNPP (Hereditary Neuropathy with Liability to Pressure Palsy). Interesting. Here is a site concerning it.

http://www.ncbi.nlm.nih.gov/pubmed/14555828

Also, I do believe IVIG is for autoimmune diseases which the two above are not. What are your symptoms if you care to share. Hope you find the answer and thank you.

Hi Kitt

Thanks for your response and the additional information.

My symptoms... started initially with problem with balance a long time ago. This resulted in problems with walking; having to have injections in my ankles due to pain from walking improperly; teaching myself how to walk again and my strength depleting over time to where walking is very problematic (I use a wheelchair for long distances - I use a 4-wheeled walker with a seat for short distances or in places where I know I can sit when I need to without creating chaos); swelling around the ankles if I stand or sit for too long a period; pain in the knees, feet, hands; feeling fluey(?); catching the infection of the moment - if I am in a confined and/or crowded public place (I had a very bad 2011 caught laryngitis, then a very bad chest infection, then what they thought was meningitis (ended up being a very bad migraine but with a high fever); tired; no grip strength in my hands; drop foot; heavy feet on bad days; foggy head. There are other symptoms that seem to come and go depending on good and bad days.

My balance started becoming an issue back in 2003. I wasn't taken seriously until late 2009 when I insisted that my GP take me seriously and refer me to a consultant. It has taken 4 EMG tests for them to figure out the neuropathy I have and several consultants. I now feel, at least, like the consultant I am seeing may be the one who will work with me to figure this out but I have been disappointed so many times that I hesitate to place my complete trust in this.

I know I'll have to educate my GP about this because he is a General Practitioner and will not know specifically about this but I have to educate myself first.

It is quite exhausting, confusing and frustrating because just when I think I have a hint at what is going on, I find something else out to take me down another road. One day at a time, I suppose.

Thanks for taking an interest. I will keep looking, keep reading, keep researching and keep everyone informed of my progress. You never know, something that is happening with me might supply someone else with information they've been looking for as well.

Thanks again, Kitt!
All the very best! ~ Jean

@Jean....

Have you had Vit D testing? Low D levels, impair immunity and raising them can ward off flu, colds, and other nasties.
Low D also is showing up in PNers.

Have you had B12 tested? Often low levels are reported as
normal.

What antibiotics did you use with your illness... if a fluoroquinolone like ciprofloxacin or levofloxacin, you could have nerve damage from that. Taken with NSAIDs or prednisone increases likelihood of nerve damage.
Many doctors do not know this, or patients.

Hello MrsD,
Thanks for your response. I wasn't given any antibiotics with the laryngitis. Just bed rest and fluids. I was given a penicillin derivative, I think, for the chest infection (I don't really remember as I was not in a good way and I didn't keep a record of it). I was unwell for over a month with that. Diclofenac and increased Amitriptyline for the migraine - it took four days before I was able to tolerate sound or light. Had a lumbar puncture and ended up with over six holes in my back as they struggled and I suffered with that. Back pain from that for months.

I take a vitD3 supplement and a vitB12 sublingual supplement. I take Furosemide, a diuretic, for edema and Amitripyline to prevent migraines and for nerve pain (20mg). That is all the meds I take currently. I use a hot water bottle when my back pain gets too bad. It does offer some relief.

Thanks for taking an interest.
All the very best!
Jean

Thanks for the drug list:

Furosemide is very potent. It depletes the body of electrolytes.
Doctors will follow this for potassium, but they often neglect
magnesium(until the poor patient gets so low they have a cardiac arrthymia). Also it depletes thiamine B1. The magnesium and thiamine when low give lots of nerve symptoms.

So it would be prudent to take a magnesium supplement (if you don't eat foods high in magnesium) and also thiamine 100mg 3 times a day. I myself had this reaction with flared my own PN, which was stable. So now I only use furosemide once a week or ever 10 days, and that way I get rid of some of my hypothyroid edema, and don't get depleted. I also choose to take magnesium in the form a lotion, and nuts as a food source, and Benfotiamine 150mg a day (which is an improved type of B1).

It is always possible to have more than one thing going on.
You could have some genetic component but also suffer from
side effects from drugs.

In addition to these two nutrients which are severely affected,
the reference I use also lists these as well--to attention to all of these is a good idea:

minerals:
calcium
magnesium
sodium
potassium
zinc

vitamins
Vitamin B1 (thiamine)
Vitamin B6 (pyridoxine)
Vitamin C

Thank you MrsD!

I can see I have a lot more research to do and some preventive steps to take. I'll keep you informed of my progress.

This is going to be interesting.
All the very best!
Jean