Wow. What a long day. Left home at 0830 this morning and just now getting home 11 hrs later. I left Cleveland Clinic feeling inspired and hopeful for the first time in a long time!! I saw Dr. Steven Shook who is a neurologist that specializes in PN and also in neuromuscular disorders. He spent 75 mins with my husband and myself going over timelines, symptoms, testing done at other facilities and a physical exam. Let's just say he was less than impressed with the $15k + workup I had done through IU. While my neurologist at IU felt it was unimportant to do skin biopsies (because the treatment is the same regardless, according to him) Dr. Shook has ordered skin biopsies, a repeat EMG and the following blood work.....copper level, methylmalonic acid, vitamin B12, paraneoplastic AUTOABS, sed rate and monoclonal Proteins, as well as a 2 hr GTT (as he feels HgbA1c's are not good predictors of diabetes.) He has also taken my neurontin from 900mg at bedtime to 600mg three times a day (titrating up, not increasing all at once). He is also testing to rule out CIDP. He does feel that there is an additional component of fibromyalgia coming into play here and possibly causing some of my on-going discomfort. Hubby was even impressed with him.....that is pretty good because hubby is getting increasingly frustrated with the whole medical system as he watches my health decline. I will let everyone know what I find out. Lab work was done today ( except for the glucose TT) and EMG & skin biopsies are scheduled for 7/27. In the meantime, I fly out to California for a week tomorrow morning to visit my brother. Things are maybe looking up???? I will check in with you soon and share results........God bless.

Sounds like he is covering alot of bases. I hope you find your answers this time.

Make sure you get the B12 numbers... so we can know if CC is using the new criteria!

Careful with the drugs. Take only what you need. They have a bad habit of making many symptoms worse. My feeling is that how can nerves regenerate if you can't feel(and aren't using them)? Use your best judgement and go with what you feel is best but keep an eye on if the frequency of the symptoms get worse. This is what clued me into the fact I was doing more damage than good with these drugs. The symptoms started happening all the time and got worse.

What drugs are you referring to? I was unable to tolerate neurontin. I developed swelling and pitted edema. The higher the dosage, the worse the edema.

Mere

Neurontin worsened my Acid Reflux and made me trigger all the time. Made my symptoms more intense and more frequent. Neurontin and Lyrica can worsen Neuropathy longterm and lead to Diabetes(another potential moneymaker for Big Pharma). Crazy isn't it, that the only thing they give you actually makes your problem more severe and leads to other problems Big Pharma can make money off of.

I think everyone is different, Cymbalta made my symptoms worse, where neurontin is helping my pain. I am glad you have found a good neurologist kpRN, I hope my neurologist I am seeing in July is a thorough as yours has been. All the best with your test results.

I am unaware of this. where did you get this info?
Please post links of studies, I'd be interested
in reading anything about this.
(Especially the link to diabetes)

Actually I should of stated, I have come across many posts in these and other forums where the doctor keeps upping the Lyrica or Neurontin and the frequency and intensity of pain gets worse. This was also my situation. I have also read many articles, don't have links present about this drug messing with blood sugar and causing or worsening Diabetes. I will keep an eye out and when I find something post it. The reason I think I got worse and others get worse is because it masks nerve sensation causing nerves to degenerate(almost like muscles when you don't use them) quicker. Just my theory of my problems and others I have seen.

Gabapentin and Lyrica cause weight gain. So they are lumped with other drugs that do that also, and hence may make diabetes worse or raise blood sugar. Some of the gabapenin/Lyrica weight gain is fluid I suspect as well.

But I could not find studies to prove that they CAUSE diabetes independently.

Giving these drugs commonly to diabetics, would mask the effects of the drugs IMO. Diabetics blood sugars typically change alot. So the any effects these drugs would have would be hidden somewhat. I do recall one person on a forum somewhere claiming her blood sugars went up on Neurontin...she was a chronic pain patient.

Hi well I am glad CC appt went good. That doctor really spent time with you so that is good. I am on neurontin and increased slowly with my pain doctor. With each increase I did get some side effects but after a few days they lessened. For me I am not sure what med helps and what does not but at one time I felt neurontin helped. We are all different so it is hard to know what works for one may not another. The only drug that was mentioned to me that may increase blood sugar at higher doses was serequel. I hope you have a nice trip in CA.