[kpRN]

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.

[mrsD]

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!

[aeb105]

Originally Posted by mrsD

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.

[Mere]

Originally Posted by aeb105

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

[aeb105]

Originally Posted by Mere

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.

[lesley21]

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.

[nide44]

Originally Posted by aeb105

.......Neurontin and Lyrica can worsen Neuropathy longterm and lead to Diabetes............

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)

[kpRN]

Originally Posted by mrsD

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!

Copper = 136 Range is 85-155
Methylmalonic Acid = 194 Range is 79-376
Vitamin B12 = 712 Range 221-700
ANNA 1, S
ANNA 2,S
ANNA 3, S
Anti-dlial Nuc Ab
PCA, 1 S
PCA 2, S
PCA Tr, S
Amphiphysin Ab, S
CRMP 5IgG, S
Striational Ab, S (MYGRAV)
Ca Chn Bind Ab, P/Q (Lambrt)
Ca Ch Bind Ab, N Type (Lambrt)
ACh Receptr Bind Ab (MYGRAV)
AChR Ganglionic Neur
Neuronal V-GK+ Channel Ab All were negative
SED RATE WESTERGREN = 24 Range is 0-30
MPA Serium IgG= 999
MPA Serum IgA = 137
MPA Serum IgM = 77
MPA Serum Kappa = 853
MPA Serum Lambda = 342
MPA Kappa/Lambda Ratio = 2.49 Range is 1-3
Vitamin B-6 = 23.2 Range is 5-30

I was sent copies of these results to my home, without my having to ask. I still have to complete the 2 hr GTT, skin biopsies and repeat EMG/NCS.

Anyone see anything interesting or shocking here?

[daniella]

Hi Have you had your D levels checked? ARe any of these tests for auto immune conditions? I can't understand what those you listed mean. I just know when I had all my blood work we tested for auto immune conditions that could continue to this and I know D levels that are low can be signs of certain conditions. I had 2 nc/emg. The first one did not show and the 2nd showed PN. I hope you get some answers and relief. Hey how is the neurontin going?

[mrsD]

While your B12 is in the upper range I see CC is still using the antiquated range going down to 220! That's telling on THEM.

Your copper is approaching the upper range, but it is still normal.
Do you eat meat? or take a vitamin with zinc in it? I would wonder what your zinc level is therefore, because when one is up the other can be down. They are reciprocal.

Your sed rate is about what mine tests at.

I would definitely get the serum D run. Many people are very low with D.