frustrating!...but got scheduled for an MRI!
 

Just returned from our neuro appt. Doc must have been having a bad day - wasn't very patient w/ my husband! Doc said pain was a good sign - that the increased B12 was probably healing the nerves and that regeneration process is painful. He said migraines may not be related and that they in themselves can cause numbing and tingling... so he really dismissed all of my husbands complaints. He did a clinical exam and said he thought he was stronger than he was at last visit...He wrote a prescription for pain to see if without pain my husband is able to work the muscles more and continue to go on his daily walks. (?) (my husband hates pain meds!)
So... I said why 'wouldn't' we get an MRI - especially if we've met our insurance deductable? He said... we'll in that case, there's no reason not to... especially if there's a headache involved....
I almost felt like the doc hadn't review my husband's file... he was so much more non-chalant than he's been before.
He did order another blood test to see if the B12 level is rising and the Homocystine is lowering. We'll know in about 2 days.
I'm glad I have the Mayo appointment... keeps hope going!
My husband was very dissappointed. Several times during the appointment he had tears in his eyes... I know he felt weak, scared, and foolish.
Even IF it's not some big diagnosis..it's so important to know the doc is determined to find the 'solution'!!!

I have been on Peripheral Neuropathy forums here and at Braintalk for 10 yrs now.

The general concensus is that neuros are unfeeling, cold and infuriate patients. The neuros also ignore and dismiss Peripheral Neuropathies... when this is one of the most common neuro conditions afflicting people in all age groups.

Doctors in general also are leary of any patient damaged by drugs. They are afraid of being drawn into court cases or liability actions.

It is demoralizing how they can make one feel. They can accuse you of making your pain up, too.
You are welcome to join our PN forum here. Many patients share this negative view of neurologists, and support each other here.

I'd ask about Lidoderm patches...these can really help.

Thanks! So do folks just never learn what caused their neuropathy? If there's axon damage, does it repair? When does the fear of MS go away? When the B12 levels are normalized, does the fatigue go away? Will we go to Mayo and go through 3 days of tests and come away with the same diagnosis of unknown origin?

So many questions and very few answers!
Thanks, I'll try to figure out how to move to the PN section!

Here is the link to the PN forum:
http://neurotalk.psychcentral.com/forum20.html

Just click on the words and you will go there.

Many people never find the cause of their PN. They fall into the idiopathic diagnosis.

It will take time to repair your husband's nerves. It is a slow process. Check out the post at the top of the page at PN...
"neuropathy does improve" for some personal stories of our members.

Hello ididit1960,
Reading your post I was shocked as it matched my symptoms after taking Zocor for six weeks. I didn't get the headaches but it started in the left foot and progressed to both feet and legs. Have been diagnosed as idiopathic by one neuro and polyneuropathy by another. The big let down to all of this is there is no know cure. My wife has been very supportive the last five years as this hit when I retired and had many objectives I wanted to pursue. Your husband appears to be the highly active type. You will find a great deal of knowledge and support here. Visiting the old forum I told my PCP I thought I had PN. Pain is the main enemy with this condition along with limited mobility. I wish you and your husband the very best. Please keep in touch and let us know the out come. I have tried many drugs for this condition and also many supplements as well as devices such a tens unit, air cuffs, foot messagers. I suggest beside taking the oral supplements suggested on the PN forum you get your husband magnesium gel to rub on his arms and other areas of his discomfort. God Bless both of you.
Lanny

Some good news!!
 

We were very disappointed on wednesday after our most recent follow up with the neurologist (the doc seemed dismissive of his concerns and increased symptoms)..however, after one night of brett taking the Gabapentin, he is feeling himself!!! Its amazing...maybe he's on his way back!!! What a relief!!

We'll keep our MRI appointment and keep planning our October visit to the Mayo in Jacksonville... but, wow, it's nice to have my husband back and smiling!!!

That is good that he is getting some symptom relief finally.

But remember, gabapentin does nothing to the process creating
the PN. It only masks symptoms. It contributes nothing to healing.
So healing supports must be continued.

My husbands situation is nothing like yours but I will be praying for you and your husband. I understand the frustration of waiting and your anxiety from seeing continual decline must be awful. I hope you are able to find medical answers and compassionate care.

swallowing difficulty and better b12 and homocystine levels
 

After about 4 weeks on b12 and folic acid, his b12 levels have almost trippled to 640. His homocystine levels have decreased from 17.5 to 11. His pain, headaches, and brainfog worstened - but the doc said it was probably because the nerves were healing which causes increased pain. So, good news there! The Gabapentin, taken for about 2 weeks is helping significantly - decreasing all pain and relieving the brain fog.
However, recently, my husband is having difficulty swallowing his pills, vitamins, supplements, and such. He says it's like an increased gag reflex. In the last few years he has been choking or coughing at the first bite or drink of 'anything'- (it's hard to know what's going on - he thinks it's irritation on his throat from the tube used during sinus surgery - 3 years ago?!?)
He has an MRI scheduled for next week - will be interesting if they see anything parculiar.
Comments or suggestions are welcome!

They can do a swallowing MRI too. While he swallows, they'll take images and see what's going on.

Keep us posted.
Hope relief comes his way soon.