New Neurologist today at JH...LOVE her!

[mews]

I saw a new Neuro today a John's Hopkins she was so wonderful I had to keep pinching myself to make sure I wasn't sleeping. She couldn't believe I was never put on anything for pain or to control the symptoms. She had me go through another EMG and nerve conduction study. Then she did 3 punch biopsy's on my poor left leg, that is already in such sad shape. She is sending me for another MRI, a scan of my salivary glands and a referral to a GYN for women with Sjogren's and I didn't even ask for that...I sure wish she could be my reg Dr.

She also put me on Gabapentin and Effexor, so I'm hoping to hear how you all made out on these drugs. For the most part I didn't want to go on them, but the neuropathy has become so bad that I have to bite the bullet and go on some meds for it. So please let me know what you have gone through on these meds.

Thanks so much and stay well...Mary

[soycoffee]

I saw a new Neuro today a John's Hopkins she was so wonderful I had to keep pinching myself to make sure I wasn't sleeping. She couldn't believe I was never put on anything for pain or to control the symptoms. She had me go through another EMG and nerve conduction study. Then she did 3 punch biopsy's on my poor left leg, that is already in such sad shape. She is sending me for another MRI, a scan of my salivary glands and a referral to a GYN for women with Sjogren's and I didn't even ask for that...I sure wish she could be my reg Dr.

She also put me on Gabapentin and Effexor, so I'm hoping to hear how you all made out on these drugs. For the most part I didn't want to go on them, but the neuropathy has become so bad that I have to bite the bullet and go on some meds for it. So please let me know what you have gone through on these meds.

Thanks so much and stay well...Mary

A wonderful report, Mary. Perhaps the new neuro can continue to be a consultant for your care, long distance, by staying in contact with your regular doctors. I know that the doctors at the Sjögren's Syndrome Center here can often arrange for follow up with local doctors -- they can get paid by most insurance companies if the patient returns within a year (not approximately a year, not "well I would have been there within a year, but"). Even without the return, they will, for a year, share their insights from a diagnostic visit/diagnostic research study with your local doctors.

I can only tell you about Gabapentin, as I haven't been on Effexor. I've been on Gabapentin since 9/2001, just before 9/11. The neuropathy was really bad by then, with burning (the first sign), tingling and prickling, and numbness extending up my legs starting with my toes.

Gabapenting has been very effective over this time at relieving the burning, tingling, shooting pains, and prickling. It has not been effective in relieving numbness and loss of sensory input, and position sense. That is, it did not prevent my falls, when I lost the sense of the ground under my feet or the positions of my feet.

It would be good to get a vitamin B-12 level, and perhaps a urinary MMMA test, and supplement with sublingual Methyl B-12, unless the B-12 level is over 1,000. That is because maintaining a high B-12 level will slow or stop and possibly restore demyelination, or loss of conductivity, of the nerve.

Gabapentin is an anti seizure medication that has been found to have the additional property of damping down nerve pain. Because it is an anti-seizure medication, it is wise to go slowly both in increasing and decreasing the dose. That is, make a commitment to taking the drug every day in the same amount, until you and your doctor agree to increase or decrease the dose.

On gabapentin (or trademarked name Neurontin) I built up gradually to a maximum daily dosage of 3600 mg. 

With methyl b-12 supplements as well as gabapentin, I was able to decrease to a total of 300 mg/ day of gabapentin, and now am taking 400 mg /day, the better to maintain a steady level of Gabapenting.

This is the trick to a good experience with Gabapentin. That is, it is very important to maintain the same level of gabapentin, day in and day out, unless you are deliberately increasing or decreasing the amount you take, and you should have a doctor's knowledge and supervision when you do it.

Side effects: Mostly none, except feeling a little weighed down, in the sense of attached to the earth, not as spontaneously active. I did maintain the ability to stick to a task for long periods, just didn't feel quite the same doing it.

That's my subjective assessment of gabapentin /Neurontin.

Good luck, and PM me if you need further information.

Best,
Soycoffee

[Chickpea]

Hi Mary!

It's lovely to hear a positive report about a hospital visit.  It sounds as though the neuro you met actually saw you as a whole person rather than a collection of symptoms which sometimes happens.  She's a 'keeper' as we say here!

Let us know about the gynae who specialises in women with Sjogren's - I've never heard about that speciality and I'd love to know more.  Many of us here have or had endometriosis and I've often wondered if there's a connection.

I don't have experience of either of the meds you've been prescribed although I've been taking a similar med to Effexor for over 4 years.  In the UK neuros prescribe Amitriptyline/Nortriptyline for neurological pain, usually in low doses of 10-30 mg.  It's hard to know how much difference it makes.  I take 20 mg of Nortriptyline at night and haven't noticed any side effects.  I think you need to take 70 mg+ to have any of the mood changing effects.

I hope your poor left leg has recovered from the punch biopsies.

Take care - Chickpea

[gurs]

Great news...I use my rheumy as my Primary care doc because she is the only one I ever really see, and plus she knows about everything.
Problem is, she is a 2 hour drive, but then I have all my other speciality docs, heart, ENT, lungs, etc in my area.

I would not start these meds at the same time. Try one, see how you feel for a few weeks, then try the other. Always in the lowest dose
possible.

I hope you can find some relief. Sounds like your doc is a winner!

Gursie

[anita]

I bet you'll be seeing Dr. Burke (GYN) at the Sjogren's Center.  So glad you got into the Hopkins system.  I'm curious who the neuro was.  I see Dr. Birnbaum but I heard he isn't taking new patients anymore.

Anyway, very happy you're getting great care.  Wishing you the best.

[mews]

Anita,

LOL yes that was the Dr's name for the gyno Dr Burke..that's so funny to find other people that know these Dr's in such a big hospital like Hopkins. Yes Dr Birnbaum is not taking new patients but he does over see the the younger Dr's. Dr Ostrow, and the PA Kathy Burke who is beyond incredible, I spent most of the time with her and I loved her.

Soycoffee
Thanks for that great explanation of the Gabapentin I am using it very slowly as I am one not to over medicate. I did not use the  Effexor as I feel it's not for me and I will let them know that when I call tomorrow.

gurs, I know..I would never start two meds at once, thanks for looking out for me !

Chickpea, thank you for your great info!