chicago area neurologist recommendation
 

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

Jack Miller center in Chicago specializes in peripheral neuropathy

Thanks, I will check them out!

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

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

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.

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.

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.

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.

Did I see you post that you had elevated creatinine on a recent test?

Are you still taking the Xanax? This is important, because in the short run it works, but as you develop tolerance you will have breakthru pain as each dose wears off. Xanax is a fast acting and quickly eliminated benzo. It can help pain in a way similar to anticonvulsants, and Benzos are sometimes given for seizures too. But when they leave the receptors, then the pain returns until another dose, or a dose increase. It can become a vicious cycle therefore.

Chronic infections suggest low Vit D status. Did you get that tested? Raising low levels, will improve your immunity and may reduce likelihood of chronic upper respiratory infections.

Does the Mobic work for you at all?

Zithromax does not show up on lists for neuropathy. But some papers show that it is not so safe for the heart. There is an increased risk of cardiac death found in new studies:
http://www.webmd.com/heart-disease/h...k-heart-attack
This article cites heart rhythm-- which is a nerve conduction issue in the heart.
http://www.nytimes.com/2012/05/17/he...den-death.html

Twice a year is a higher frequency than normal. But the jury is still out on this new information at this time.

I have not seen Ambien linked with PN as yet.
http://www.drugcite.com/?q=ambien
you can expand "neurological" and see no reports of neuropathy. But with drugs, one never knows for 100% surety.

You might try magnesium supplements, as they often help nerve functions. Take a Chelate type (citrate, gluconate etc) and not OXIDE form. At 1/2 RDA which is about 200mg for adults elemental. Magnesium blocks the pain receptors called NMDA receptors which are activated by calcium and glutamate.
Avoiding MSG in foods may help because of this too. Magnesium often improves circulation too, in addition to helping with pain.

You have a great memory; I do have elevated creatinine based on a recent blood test. I have searched about that and I would attribute it to the weight lifting. I have gotten more intense with that this past year as it was the only exercise I could do and I was also rather upset about my new physical limitations and pain. The doctor who ordered that test said that could be a marker for kidney function but not based on the rest of my blood test which was perfectly normal.

I am no longer taking the Xanax (yay!), just melatonin and valerian root at night. Major victory for me since I had anxiety at bedtime for many years.

I have been taking vitamin D for over a year now. The last I tested it was ok - 44 I think. Interesting about the link to infection. The last infection I had about month ago I was able to fight off on my own which I was very glad about.

The mobic is helpful but not on its own. The gabapentin is the most helpful. I appreciate that I tolerate it well.

Thank you, I will look into magnesium! I started fish oil last spring and the supplements listed here in august including R lipoic, coQ10, high B12.

I had also inquired here recently about MMA and homocysteine testing. My primary care was hesitant to prescribe a test she wasn't familiar with and the neurologist at U of Chicago said my symptoms were not congruent with B12 deficiency which would be more lack of balance, numbness etc when I have all hypersensitivity and pain.

People who run alot, can have microbleeds in the kidney.
Over time? Might compromise some function. But the kidney takes a long time to show this.

I am reminded of a doctor I used to work with, who claimed only the smartest students in his class went into renal specialty. It is VERY difficult to understand and interpret.

I would get it retested in 4 months. Use the excuse of the gabapentin...which is renally cleared, without liver metabolism.
Can't argue with that. Have him to a panel, with anion gap, just in case.

You might try SunTheanine...at night. It is relaxing and Dr. Blaylock recommended it for PN.
http://neurotalk.psychcentral.com/sh...light=theanine
I take 200mg at bedtime and it relaxes me. Along with a Melatonin. I use Doctor's Best. My son also uses it at times for anxiety.

If you use the methylB12 form you don't really need the other tests. They would only show if you were not utilizing cyano form,
(converting it to active in the body).