Neurologist in San Diego?
 

I am having trouble locating a good neurologist that would know about CMT, even Scripps La Jolla, had no mention of a doctor specializing in Herditary Neurapathy. after being greatly disappointed by the Endocronolgist I went to at Scripps today, I am reluctant to go back... You would think a pricy top of the line award winning hospital would hav more to offer then a Endo that did not know how to treat the thyroid... I guess I could travel to Los Angeles, if need be. The only neurologist mentioned on the CMT site is at a children's hospital.
Any ideas?
Thanks,
Jon

How about Cedars-Sinai Medical Center. I believe there is a neurologist there who is familiar with CMT.

I found a hopefully good Neurologist and he is close to home. The soonest appointment is June! I am hoping for a cancelation, so I can get in sooner.
I was going to go to Scripps La Jolla, but thy recommended a Doctor that had only bee practicing for a couple of years, and they didn't even have a listing for PN... I had also read a review on him, the patient had explained her symptoms of burning feet, the doctor said it was just a mental imbalance... I don't want the Neuro/shrink doctors, that try to make PN a sycosis, just because the pain is precieved in the brain, does not mean it is not a viable disease!

I was strictly mentioning Cedars Sinai Medical Center since you mentioned CMT and they know CMT there as I have read.

Yes, I did mention CMT, it is amazing there isn't any clinic in San Diego that deals with this! If you do a search at the major hospitals there is no mention!
I figured I would see a doctor that can test me for either small fiber Neuropathy or if he thinks it is CMT can test for that. It is a private firm, not in a big hospital setting, and the Neurologist seems to have the creds to make a good diagnoses. If it leans more to CMT, I will have to drive up to Cedars Sinai for further help.
Thanks!

Jon Sparky,

Interested to hear about your experience and if you like the neuro you will be seeing.

I too am from San Diego (Encinitas) and have had idiopathic SFN for 20 years. Ironically, I just saw a neuro at UCSD just yesterday by the name of Dr. Sheean. He only sees people for second opinions, but I thought he was really impressive and eager to keep searching for a diagnosis and treatment, which was refreshing.

Don't be discouraged, it was at the very same clinic 20 years ago that a neuro that still practices there said "I wouldn't put you through those invasive tests even if you were my own child". Well, I got a second opinion at UCDS La Jolla and found out that I had elevated spinal fluid proteins and was diagnosed with PN. Keep advocating for yourself, and best of luck on your journey.

Cool, I used to live in Encintas for several years. I have been a monk with SRF for 27 years. You may have visited our gardens on the bluff there at Swami's point.
The doctor I am going to see has a office in Oceanside and Escondido, I am out in Escondido area now, so it is only 20 minutes away. The doctor I chose has experence with PN and is a specialist for testing small fiber Neuropathy.
http://www.neurocenter.com/the-neuro...tors.aspx#greg
Dr. Gregory Shahagain. I will let you know how it goes. I still think I have a mild version of CMT 1A as my father really went through it, losing the feeling of his legs, about my age. Another twist, he had hyper atrophy in his calf muscles, so instead of wasting, they were large, but weak. I have the same version, along with high arches and the start of hammer toes. But I will see what the Doc says... Hopefully I won't have to spend thousands on a DNA test, seems kind of a waste, since they have no cure. Now I just have the waiting game, until June! Hopefully someone will cancel and I can move up the line...
I am a little turned off by the big hospital seen, Scripps was just going to assign me a junior doctor, I think that would probably be a waste of time...
Hopefully your Dr Sheen will find some help for you, though there doctor bag is quite empty when I comes to helping PN...

Was your father ever "diagnosed" with CMT1A? As far as having large calf muscles but weak, that is normal too with CMT. You do not have to have thin calves, hammer toes, high arches, etc. Your feet can look normal but you can still have CMT. It depends on the muscles that are affected.

CMT symptoms vary greatly even within the same family. If you have EMG/NCV testing that should tell you if you have CMT1 or CMT2 but not the sub type. When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal but the strength of the signal is reduced. All forms of CMT are either demylinating or axonal in nature. CMT is a multi-gene disorder and so there are many different genes that cause the disorder. There are over 70 kinds of CMT identified so far. A neurologist who knows CMT should be able to tell if you do indeed have CMT with EMG/NCV testing and whether it is of the most common - CMT1 or CMT2. However, if your father was diagnosed with CMT1A that is what would be in the family.

DNA blood testing is expensive so that is a concern. As I said, EMG/NCV testing should be able to tell you if you do have CMT1 or CMT2.

CMT is progressive no matter what you do. You can have symptoms of CMT that are evident when you are young, old, or in-between. Or you may never have symptoms that are evident but you still have it. No one, not even a doctor, can tell you how you will end up with CMT. Hope you find the answer.

Unfortunately, I have no medical records from my Dad, he went to Navel hospitals for his Dx and never told my Mom. I remember him telling me that his doctor told him that the high arches were tied to the PN, I didn't know about CMT at the time, so I remember thinking that was kind of odd, that high arches would have anything to do with neuropathy. This was pre-google when you just didn't have information handy! I know he had hammer toes and high arches like mine. He told me that the nerves felt like a fuse slowly burning up his leg, then he lost all feeling of his legs. I did acupuncture on them one time, and he could feel some sensation right afterwards.
If I need further diagnoses beyond the local Neurologist, I will just have to commute up to Los Angeles. I still find it strange that there are no CMT specialist in San Diego. Seems like Scripps would at least have one doctor.
The last time I consulted with a Neurologist he ordered the DNA test, but he told me that even if I tested positive there was no cure. I thought they just wanted to try out there new diagnostic tool at my expense! Now that I have read more into it, it would make some sense to find out what I have...
Thanks for the info!

Yes, there is no cure/treatment for any type of CMT at the present time. However, much research and trials are being done and have been done. Hopefully down the road there will be whether it leaves you right where you are with your symptoms or not. Thank you.

Funny thing happened when I went to see my Rheumatologist today, I told her that I was planning to see a Neurologist, she recommended the same one that I came up with!
That is a good sign! Just shows you how few there are, that treat this kind of thing, in San Diego. She has been in practice for several years, so she has a lot of connections. I told her that I was thinking it may be CMT, she is still thinking Pre-Diabetic Neuropathy, we shall see...
I am also back on Ambien for sleep, I was taking it for two years, and then went off it for a few weeks, but haven't got much sleep.
Is this a common thing with PN, this inability to get to sleep and stay asleep?
Then Costco pharmacy screwed up my prescription, I was at the big box store for 1-1/2 hours! I ate a lot of free samples, but that is a long time to be on my burning painful feet!

I actually saw Dr. Sahagian before going to UCSD. He did the skin biopsy that showed reduced nerve fiber density consistent with SFN. Since we live so proximate, we should maybe have a cup of coffee one day. It sure would be nice to actually meet somebody that could truly empathize with my journey. Also, given your religious background, any insights on coping with this would be truly appreciated. As the pain has increased, the coping with this has become extremely challenging.

Yes, lets do that! I will PM you when I go to the coast next. Right now I am heading to the desert... It would be nice to talk to someone that would understand the level of pain, most of my friends have no idea. Having meditation practices have helped detach myself form the pain, but with it always there, it makes it a challenge!
Curious, why did you decide to go to UCSD after Dr Sahagain? Being that there is no cure, has UCSD offered you anymore insight or relief from the PN?
Take care,
Jon

Sfn
 

Hello- I am also in the San Diego area and I believe I may have small fiber neuropathy in my feet since 2005. I was diagnosed with Fibromyalgia but I am also questioning the diagnosis. I had a negative EMG in 2005 which leads me to believe it could be SFN. This pain seems to wax and wane in my case. I was doing very well for the last four years until I suffered a relapse with my feet. I have all of the sensations with SFN but I can't get a definite diagnosis. In 2005 I saw numerous specialist and each one gave me a different diagnosis depending on which type of specialty they studied. I gave up the search after getting the run around and felt very discouraged and turned off by the medical field.

The medications that have helped somewhat are amytriptyline and Gabapentin. In 2005 I also started taking 10 mg. of oral hydrocortisone and that's when the pain really turned around. I am now off of hydrocortisone as of the last two years.

I was wondering what Dr. Sheean has helped you concerning SFN? I have not had a skin biopsy, it was never offered, but I have researched this and am wondering if this test could help me get a proper diagnosis? Thank you.