just diagnosed
 

Hi everyone, Had EMG yesterday with my Neurologist. His comment when finished was that I have Neuropathy. He said to make an appointment with my GP for next week to go over things??
Same as most, started with pain in the ball of my left foot which turned to numbness, pins and needles. Over 4 months this moved to burning in both feet and now legs with ongoing throbbing, pins and needles in my hands and fingers. I have also started having random intermittent sharp pains in my calves and shins. I also have aches in my head and tenderness around the temples.
I also mentioned to the Neurologist my most worrying concern, periods of memory loss and confusion. I have had trouble with multi tasking and some times even adding up basic numbers in my head. Sometimes I have trouble finding the right word and just spitting it out.
The Neurologist didn't think these problems were linked to my Neuropathy, but I'm not so sure. As my body symptom's have increased so have my cognitive problems. I am scheduled for a PET scan to check for early Alzheimer's
I have had 2 melanomas removed (early stage) and have a 10yr history of working with MDF (Formaldehyde) in our workshop at school.
I'm concerned of making mistakes with my students and also duty of care.
Can this all be linked together.
Dearly appreciate any help and advice.

Hi Phil,

Sorry you find yourself here, but welcome. You've found a wonderful place to learn and get support. You'll hear from a bunch of helpful people, but I'll ask you my "mantra" question right away...

What tests did they use to screen you for diabetes? Sometimes diabetic neuropathy shows up before the diabetes does in bloodwork, and because 60% - 70% of all diabetics will develop neuropathy, it has to be looked at very closely. It's pretty general consensus here that cutting back on sugar and processed carbs is a good thing to do regardless. Right away, start thinking about your diet.

And your B12? Did they test that?

You seem to be experiencing "brain fog." When my symptoms were really bad, I had that. It's like my brain just wasn't working right. Try not to panic about it. I think it's relatively common with SFN.

I have the weird thing in my temples as well. Do you have any known neck problems? My neck is a mess, and I think my SFN is just opportunistic and exacerbates those issues giving me weird sensations in my head which is where I normally experience symptoms from my neck. I used to just get headaches, now it's all this other stuff too. I sometimes feel like I have electric current running from my right temple down under my right eye.

You'll hear about a lot of supplements that can help. I'll tell you the ones that I'm absolutely convinced helped me... Alpha Lipoic Acid in its more bioavailable form called RLA, and quality omega 3s. (fish oil) These two things have been found to be protective to nerves in research studies, and I do believe they've helped me.

Hang in there. You'll get a lot of help from the forum.

Janie

Thanks Janie for your help.
I have only had blood tests over the last year for diabetes and nothing for B12.
But I meet with my GP next Thursday week to go over the Neurologists report.
I can't but wonder how bad my mobility will get. Got notice today that my PET scan is in 2 months.
Thanks again Janie

Hello,
I had terrible cognitive problems in the beginning. It was so bad at one point that I couldn't balance the check book with a calculator or comprehend a conversation if there was background noise. I felt like I wasn't me. I lived in a thick fog every day for about 6 months. This was when my autonomic problems were most severe.
Have you had the tilt table test?

Welcome to NeuroTalk Phil:

With that melanoma and formaldehyde history, have you had a paraneoplastic panel run? This detects cancers often before they become symptomatic or obvious.

Did you have chemo at all for that melanoma, or just surgery?

Formaldehyde is thought to cause cancer, and the most common type is leukemia or other bone marrow types.

By all means, get that B12 run and a Vit D too.

Hi PhilfromOz,
I'm sorry to hear about your problems. It's good that you're having the PET scan to help you better understand your cognitive issues. Are you on any medication that might be contributing to your brain fog? Your GP should be able to answer your questions and order lab work for you. You might find it helpful to bring someone to your appointment with you to make sure your concerns are listened to and your questions are answered.

I'm a school librarian and I can understand your concerns about your students. With chronic pain, I have become noise sensitive and just plain worn out. Making it through a school day can be very challenging. But I don't let this get in the way of providing quality service to my students. Going to work every day gives me something to focus on and the kids always brighten my day.

I try not to talk about my health at work, but my boss and coworkers know what I'm going through and have been very understanding. I hope this is the same for you at your school.

I hope you get some good answers and treatment soon. Best of luck with your appointment, Cheryl

Hi,no haven't had anything except the EMG this week. Due back with my GP next week to find out what's next I expect. He has referred me to another neurologist Regarding my memory and thinking problems to rule out early Alzeimer's. I said to him I thought my leg, fingers and feet problems were linked but he didn't think so. Hmmmmm
Phil

Hi Cheryl I really appreciate your help. It is hard at work but like you my students are a breath of fresh air. Apart from my boss a few staff know and are supportive. My principal is very supportive and happy to wait for further tests to see where I'm at and whether I will be ok to continue my role. Others who know I'm having some health issues and very nicely keep asking how I am, I think I will just say fine thanks. It's too hard going over and over it.

Thanks again

Hi and thank you, I had surgery for the melanomas not chemo for they were early stage. My legs are tired but I can still walk fine, but they are charged up all the time. Haven't had blood test for 6 months and apparently they were full blood tests ? I will ask my GP about the paraneoplastic blood test. I am concerned with cancer.

Hi Phil,

As the stickies suggest there are many things that could cause sfn. You should look at your autoimmune indicators (ANA, Rheumatoid factor, IGG, IGM levels), heavy metals panel (things like mercury/copper, b vitamins toxicity/deficiency), bacterial infections (lyme/late lyme) etc. 50% of these cases or more end up being idiopathic meaning they just don't know or they don't know yet which is frustrating. Hang in there. I too am in the struggling to keep up with work and not sure how long i can hack it but I am fighting hard every day! If you have any questions feel free to msg me.

Wish you the best.