A little about my husband..
 

Hi,
Three years ago my 50 year old husband was very healthy, active, and happy. After a checkup prior to a boyscout high adventure trip, his PCP put him on Lipitor for a 220 cholesteral score. Immediatly he had all the 'bad' symptoms you find in the small type. He went off of the drug after 6 months. They put him on another Statin drug that lasted about 3 months. They tried another non-statin that did nothing. He gave up and just tried to improve his diet and exercise. That was 3 months ago.

Since then, his elbows and now entire arms have never recovered from the numb, tingling, weakness, & pain. He could not shake hands (especially w/ men who tried to prove something w/ their handshake!), open champagne, drive a car for long distances, etc. After 2 appts. w/ his orthopedic surgeon and an mri on his arm... he was told theirs nothing structurally wrong.

Finally, I did some research about statin drugs and their ability to remove the myelin sheath from the nerves exposing them to damage... i found a neurologist a few months ago and have seen him twice. My husband had a Nerve Conduction Study and and EMG. The results were severe axonal damage and moderate myelin damage - thus he was diagnosed w/ Chronic Axonal Neuropathy. ok. how did that happen?

The next week he had 2 back to back migrane headaches - 6 days of on the floor pain. but, they subsided right before the doc appt and he felt great!

The doc studied the blood test to reveal a low (279) B12 level and a high (17) homocystine level (supporting the low b12 diagnosis). So, he started a mego dose regimine of folate and b12 orally.

immediately, he got headaches again and his legs began symptoms like his arms but came on faster and more spastic (tight). he says he's afraid he'll wake up one day soon and not be able to get out of bed and walk.

He has extreme brain fog (he looks like someone turned off the light inside his head - literally!!!!). He's been chronically constipated for about 2 years (some say this is a symptom of 'something'). Yesterday his arm went totally numb again..

Earlier this week I did beg for another appointment saying i'm not willing to wait for 3 months to see if the b12 is working when he continues to slide downhill. (he's lying on the floor more than he's sitting up these days!!!) We will see the doc again this Wednesday. I'm hoping for at least a b12 injection.

Today I went ahead and scheduled an appt at the Florida-Mayo for late October.. just in case.

Maybe it is simple b12 deficiency... but i'm scared, he's scared. it's so frustrating to not know and try to go on with life like nothing is happening.

but i will!

Thanks for listening...

:hug: I am so sorry your going through this. The unknown is much harder than knowing, trust me, I know. My hubby has ms and I remember very well how many docs and tests he went through before he was diagnosed. It was fast for him and I hope the same for you too so he can get the treatment he needs. :hug:

That's just awful to take a med thinking you're going to get help, and have it make you that sick!

Glad you made the appt. Hoping you get some quick and accurate answers.

Let us know how it goes, k?

Welcome to NeuroTalk, the place to come for answers. If we don't have the answers (usually we don't!), we'll at least give you support. :hug:

I hope you both get answers soon. Has he had tests for vasulitis? It was one of the first things the PCP wanted checked because I have migraines, brain pain is more than a little debilitating.

I also take B12 injections when I need them, I give them to myself at least every six weeks or less. It also helps with the fatigue.

Welcome and I hope he feels better soon...:hug:

you and your husband will be lifted up in prayer tonite. I wouldnt wait either,,and i agree with you,,there is something wrong,,and the mayo clinic will not treat him,,,but they will diagnose him,,,,,,,,,,,,,,,,much love with empathy,,,,,,bobber

wow
 

I hope our resident experts on drug toxicity, Mrs.D and Jackie66, weigh in on this.

I'm so sorry for your husband's troubles. He's lucky to have such a loving advocate and life partner.

Good Luck

Welcome to NeuroTalk. This subject has been a hot topic on many forums here.

This link
http://neurotalk.psychcentral.com/thread102924-2.html
post #12
is from olsen, who follows the statin research carefully. It explains how the side effects manifest and why.

To get over this damage, your hubby needs more than B12 and folate. He needs EFAs, (omega-3s) to rebuild the myelin, and also CoQ-10 in high doses to help improve the mitochondrial damage to the nerves. Acetyl Carnitine may help in this regard too, as it is often used for patients with chemo damage and damage from other drugs.

If you search the Peripheral Neuropathy forums for "statins" there are many many discussions there. Also at Medications, and Parkinson's, and even at Multiple Sclerosis.

Dr. Jay Cohen, MD has a book out on this subject:
http://www.medicationsense.com/
His website is always interesting to read and current.

Another good resource is:
http://www.spacedoc.net/

It is a shame your husband has to go thru this. A reading of 220 is not that high.
Here is a video to watch:
http://www.youtube.com/watch?v=i8SSCNaaDcE

Welcome to Neurotalk. I was once on that not knowing bandwagon(still
am, I guess). Its very difficult.

Make yourself at home and have a look around. There is great info to
be had here.

Im sorry you and your husband are going thru such a difficult time now.
I hope things get better soon.

Thanks for the info! He has read Duane Graveline's book Statin Damage Crisis and is taking all the supplements recommended (especially COQ-10). We have NO DOUBT Lipitor cause a 'trigger' somewhere in his body immediatly upon taking the drug to set this 3 year nerve destruction in motion. Why, how, i don't know. But, it can't be coincidence the way it all hit him and never went away during the 5 months on statins.
Thanks again!

http://i489.photobucket.com/albums/r...me-bug-ag1.gif

Hello ididit, and welcome to NT! This is a great place. You will find a lot of support here.

I'm so sorry about what your husband is going through. I wish him the best.

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.

MRI results
 

okay... just have to write...and get of the internet search - i'm driving myself crazy.
My husband went in last week for his contrast MRI (requested a swallowing MRI too, but that didn't get coordinated in time)... he's been feeling GREAT with the gabapentin - just like his ole self!!!
My husband is to have his follow up with the neuro doc on Wed. of this week. Today i got a call from the nurse confirming the appointment... I told her that I was not going to be able to make the appointment as I have a conference out of state and will be flying out early. She was kind of quiet.. so i said..well, unless i need to be there... if the MRI is abnormal, or if there's bad news, i want to be there for the news.. but if it is normal, i probably need to travel for work. She said she'd check and call me right back. within 5 minutes, she called and said she'd talked with the doc and even tho he didn't say one way or the other, he did indicate a slight abnormality and it would be important that i was there with my husband. She also said she would be available to meet with us afterward and to call at anytime day or night if we need anything - she gave me her cell #. (this was a new nurse we had not dealt with yet). i was suspicious because she was so helpful and nice (kinda sad, huh?). So, I"m postponing my work trip for a day to go to the doc w/ my husband... it is hard not to obsess about this!!! i know.. i have to wait.. and it may be 'nothing'!!!! but, still... wow!!! what a trip (or not!)... just freaked out... will let you know...
The gabapentin is sure a relief!!!

You're a good wife. Hope everything turns out ok.

Gabapentin comes in a liquid form. It is not very stable and has to be refrigerated. The pills for it are very large, and would be difficult for some people. It helps to put large oval tablets on the tongue, with the point facing back and then drink some water and throw the head back and swallow. Some people find using a straw helps with swallowing.

http://www.brucemedical.com/mepiswsy.html

The B12 is typically a sublingual type tablet. These can be chewed up and swallowed --take on an empty stomach.

Most vitamins can be ground up and mixed into apple sauce or pudding.
If you give me a list of the drugs and supplements he takes I can look that up for you... which are safe to alter.

Extended release forms of drugs cannot be ground up. There are a few that may be broken in half, but one has to be very sure before attempting that. Always ask your pharmacist about extended release drugs and safety issues. Your pamphlet you receive with them, usually spells that out. Some drugs with tiny time beads in them can be opened into applesauce and swallowed WITHOUT chewing. There are a few of this type on the market.

If your husband has GERD, and doesn't realize it, he may be refluxing and irritating the throat during sleep. This may increase the gag reflex.

hi ididit. please try to keep a positive attitude, both of you.
even IF something is wrong it may be able to be treated. don't give up hope.
i know all too well how hard it is to schdule test, wait for the results and deal with it, good or bad.

i will be saying some prayers for both you and your dh.

MRI results and ongoing improvement!
 

Visited the neuro doc to hear about the results of the MRI... I had planned for the worst and got 'good' news. All he saw was evidence of "small vessel ischemic disease ". He said since the Gabapentin has solved the 'pain', we should just come back in 6 months for another MRI and compare to see where we are then.
It was good news.. but confusing. We still don't know why this happened nor if it will happen again. My husband continues to feel better - he says 'almost normal'!!! He still takes the Gabapentin (2 pills at night). I just can't believe where he was 1-1/2 month ago.. and where he is now.. it's day and night!!! Was it really just a B12 deficiency? And if so, why did he get deficient?
So... as healthy as he feels now, we're still going to the Mayo in Jacksonville in 8 days. What would others do, continue to look for a cause? Or, save our $$ because he's feeling better? So far he's been diagnosed w/ Axonal Neuropathy and Small Vessel Ischemic Disease.. (and i believe those are unrelated).
I feel almost embarrassed that we were so worried...if it was something as small as a vitamin deficiency.. i feel like we cried wolf for nothing... but the 'nothing' took the 'life' as we know it out of my husband.. that's scary!!!
thanks for listening... i'll let you know if the Mayo gives us any answers beyond what we've learned. thanks for being here... i don't know who else i could have talked to that wouldn't have thought i was a worry-wart! :winky:

MRI - good results (i think!)
 

Visited the neuro doc to hear about the results of the MRI... I had planned for the worst and got 'good' news. All he saw was evidence of "small vessel ischemic disease ". He said since the Gabapentin has solved the 'pain', we should just come back in 6 months for another MRI and compare to see where we are then.
It was good news.. but confusing. We still don't know why this happened nor if it will happen again. My husband continues to feel better - he says 'almost normal'!!! He still takes the Gabapentin (2 pills at night). I just can't believe where he was 1-1/2 month ago.. and where he is now.. it's day and night!!! Was it really just a B12 deficiency? And if so, why did he get deficient?
So... as healthy as he feels now, we're still going to the Mayo in Jacksonville in 8 days. What would others do, continue to look for a cause? Or, save our $$ because he's feeling better? So far he's been diagnosed w/ Axonal Neuropathy and Small Vessel Ischemic Disease.. (and i believe those are unrelated).
I feel almost embarrassed that we were so worried...if it was something as small as a vitamin deficiency.. i feel like we cried wolf for nothing... but the 'nothing' took the 'life' as we know it out of my husband.. that's scary!!!
thanks for listening... i'll let you know if the Mayo gives us any answers beyond what we've learned. thanks for being here... i don't know who else i could have talked to that wouldn't have thought i was a worry-wart! :winky:

"vita"min....vita meaning vital......you dont get, you die......so please dont "worry about worrying about it"......may he continue to be well