[bananababe]

Can anyone recommend a neurologist in the chicago area? I have seen two (one from U of IL) and been disappointed with their response to wait and see if it gets worse or goes away. It is clear to me that the PN is getting worse and I have not yet found a cause or a doctor who knows any of the stuff I've learned from this forum. I'd appreciate a recommendation if anyone has one.

thanks

[echoes long ago]

Jack Miller center in Chicago specializes in peripheral neuropathy

[bananababe]

Thanks, I will check them out!

[FlyingSquirrel]

Dr. Roos is the director at Jack Miller, his phone number is 773-702-5659. Good luck!

[bananababe]

Thank you very much! I have just sent in my records and information and will try to wait patiently until I hear back.

[bananababe]

So I couldn't get in with Dr Roos. He sent me back to general neurology, which I was very disappointed about. I was able to get an appointment last thursday with a neurologist. Luckily, I didn't have high expectations since I thought it was Dr Roos who I should've been seeing. They explained that Dr Roos specializes in MS, ALS and loss of sensation. I have PN but all hypersensitivity with tingling and burning and no loss of sensation. The internist and neurologist at U of Chicago were nice but said the same thing I have heard many times now which is my symptoms are not "worrying" because they can see no obvious cause (I have no abnormalities in my bloodwork, EMG/NCV and MRIs) and my symptoms do not coincide with any specific conditions, other than PN.

I been told by my podiatrist, psychiatrist and primary care to keep looking, there has to be a cause but when you go to the experts they tell you it's about pain management. It's hard to get both kinds of responses because on the one hand, I need the hope that something can be done or figured out because I agree, how can you be very active and healthy and at 32 suddenly have all this pain? But then the hope gets dashed every time in a less than sensitive way by the neurologists:

"You're lucky the gabapentin is helping"
"It doesn't sound like it's progressing" after I've just described how it is
"Why are you upset?"
"Your symptoms are not worrying" - to whom??

Those responses only make sense to me now that I know my symptoms are not markers for something worse. However, they are so discouraging when given without context and further explanation.

Plus, I am convinced that neurologists know less than this forum about PN.

[mrsD]

I believe that many answers can be had from examining your lifestyle carefully. What you do, hobbies, what illnesses you've had, vaccines, drugs, antibiotics, solvent exposure and other chemicals, diet..etc.

Keeping a journal may help...if you have good days and worse ones. Once you see what a trigger may have been, you can try the various supplements to help with that particular trigger.

Doctors still do not look for DNA errors... in methylation. (rarely do they test for MTHFR mutations)
They don't understand B6 very well, or B12. They don't understand magnesium at all. They don't understand the effects of LOW blood sugars on nerves. They don't understand high carbs food intake can harm nerves over time esp if you are low in thiamine (B1) or have a genetic problem with thiamine. And they pooh pooh food intolerances. So much of what can be done, is left to the patients to do for themselves, IMO.

[bananababe]

Thank you for your response Mrs D. Can you guys help me then? I have analyzed this over and over for the past 13 months and have followed different leads but I don't feel I have gotten any closer to solving it.

[mrsD]

Originally Posted by bananababe

Thank you for your response Mrs D. Can you guys help me then? I have analyzed this over and over for the past 13 months and have followed different leads but I don't feel I have gotten any closer to solving it.

Can you make a post with your lifestyle, test results, age, hobbies, etc? Any drugs taken...in the recent past, any illnesses, etc?

Nerves are signaling cells...they are to alert us to situations that are harmful. If the nerves are acting up, something may be triggering them. This could be in the environment or because of some medical change inside you. Some people inherit a defect in the cells which cause them to not repair and hence they deteriorate. The hereditary types of PN are called CMT (Charcot Marie Tooth). Your feet can suffer from mechanical stress and problems as well. Just lacing shoes too tightly can compress nerves in the instep and lead to damage, over time.

Often being a detective, is what we have to do.

[bananababe]

Sure, thanks so much:

I'm currently 33. I have been into fitness and health since high school. I ran recreationally since I was 16, probably 9-15 miles/week and lifted weights a few times week.

Maybe three years back I started having pain in the balls of my feet while running. I finally had it checked out two years ago and was diagnosed with metatarsalgia/fat pad atrophy. In hindsight, I know I should've stopped running but the podiatrist didn't mention anything about that.

About a year later, July 2011, my heels would feel tingly when I woke up, then they started hurting while running so I saw the podiatrist again and he said I had plantar fasciitis (and I don't recall him even touching my heels). He said I could cycle and should do calf stretches, which I faithfully did for a week until the pain became unbearable and I was crawling around my house in tears. I challenged his diagnosis since my symptoms were opposite of plantar fasciitis (I felt best in am with pain worsening with use).

Found another podiatrist who said I might have tarsal tunnel. Got EMG/NCVs and MRIs on both feet/ankles which were all normal. Now the tingling and burning had moved to top of my feet, so we tested for immune system problems and B12. All tests for immune problems (sed rate, etc, don't have the paperwork in front of me) were normal. B12 came back at 973 or so. He didn't think I had any fat pad atrophy on my heels. Started Mobic (anti-inflammatory) daily in september and then gabapentin (400mg 3x/day) in late october for pain management.

I was glad for the relief with the gabapentin but was not ready to accept pain management without more research. Went to the neurologist who had done EMGs and we upped the gabapentin to 4x/day. She said wait for more symptoms or maybe it will go away. Meantime, she sent me for a second opinion with neuromuscular specialist from University of Illinois. He said the same as her. We could do a skin test to see if small fiber nerves dying but that doesn't reveal a cause.

I started noticing electrical like sensations elsewhere in my body, at random times for 1-2 seconds. It was very different to the constant tingling and burning in my feet. I didn't want to admit this for awhile because I was very scared of what it might mean. But, it suggested a systemic cause which was another clue. I talked to the neuromuscular specialist's nurse and she wasn't concerned.

In march 2012, I saw a napropath who suggested altering my diet. I've always had a sweet tooth and prefer carbs as well, I assumed because of the calories I burned working out but I'd eliminated candy a few years earlier and thought I was eating healthily. She said sugar was bad for nerves so I cut out all sugar, refined flour, wheat dairy and even nightshades. It was so restrictive and I didn't feel any difference so I started eating nightshades again. I'm still avoiding sugar, refined flour, wheat and dairy.

After some research, she also suggested two medications I was on could be the culprit: ambien and zoloft. I dropped the zoloft immediately (I was on a very low dose) and made steps to get off ambien (got psychiatrist and counselor). In June 2012, I started xanax at night in place of ambien. I was convinced for a month that it was the ambien that was to blame and I started ramping down on the gabapentin (slowly) and was feeling great. Every two weeks I dropped 1 dose/day. After Fourth of July, I was in a ton of pain again and quickly upped back to 4x/day. Clearly this was not a side effect of the ambien, or if it was, damage had been done.

I saw another podiatrist in July 2012 who diagnosed me with fat pad atrophy on my heels, which I believe has been a large part of my pain. Now I have a new orthotic set up and I tape my heels all the time. This has helped a lot. Between this and the gabapentin I am cycling some again and still lifting weights but it doesn't explain to me why over the past month I can tell that that it has moved up to over my ankles to the classic sock area or why I have strange sensations elsewhere in my body. I understand the pain in my heels due to the fat pad atrophy but nerve pain doesn't spread like inflammation.

The last innoculation I had was a tetnus shot in 2003. I had chicken pox when I was 4 or 5. No major illnesses since. The past few years I have become a little prone to sinus infections getting 2 year. I usually take azithromyacin. I have not noticed a correlation between taking that drug and the initial onset of the neuropathy.