Need a new Neuro!

[NotALS!]

Can anyone recommend an open-minded neurologist in CT? I've been to 2 that insist I have ALS and aren't willing to consider that I have a pinched cervical nerve causing my arm paralysis. My neck is killing me! I had whiplash 30 years ago and have suffered sporatically ever since.

I've had MRIs but nothing has shown up. I have a clinical diagnosed of Lyme and am on ceftriaxone. I feel better but my arms haven't improved and my neck feels worse. I'm so frustrated!

 

[Sammantha]

There is alway's hope, but it has been my experience that no neuro wants to give an ALS diagnosis and would not go about it willy nilly.. What tests did you have done, myself and others can see if they have all avenues have been checked.

 

[twinmommie72]

If you are willing to travel Dr. Bedlack is an ALS spec at Duke in North Carolina. He has people that travel to see him from all over the world. His staff is also excellent. Keep us posted. Never give up hope!

 

[rose]

I agree that sometimes you have to travel. I was living just over the Hudson from Manhattan, and eventually my doctors said I needed to go to either Mayo or Johns Hopkins, I could take my pick, but to go. Which, considering the excellent level of experience and knowledge the doctors I WAS seeing, that is saying something. I chose Johns Hopkins, and have never regretted it.

I'm really glad that you've been able to be in touch with Tracy. Her husband is only one of others who had treatment delayed, and thus outcome delayed, because of an incorrect diagnosis.

If there is a chance that your problems are caused by something treatable, that is reason enough IMO to continue to get more opinions.

Closer to Connecticut, there is Boston of course, and New York -Presbyterian. I went to Mount Sinai myself, and they are very good, but, if you're willing to go only "so far" and New York City is within that range, then, probably Presbyterian is a better choice.

However, once you're already committed to a road trip, why not continue on down to Baltimore and Johns Hopkins. They are amazing, and really truly the best there is in the field of neurology. Ask your doctor for a referral. You can self refer yourself, but it takes much longer. Even though I moved a bit closer since I originally started going to Hopkins, its still over an hour's drive for me, but I would never consider going to some place closer for things that really matter.

good luck to you, you've got many people pulling for you here.

 

[rose]

Not to beat a dead horse, but about action needed if you even have a tiny suspicion that your diagnosed is not correct: There is another member who's husband was incorrectly diagnosed with PBP, they (the husband and wife) questioned it because of certain tests not showing what they had learned should be diagnostic for a motor neuron disease. They asked for specific tests to be run, such as a specialized MRI of just the brain stem. But again, another "excellent" neuro, with a huge ego, insisted she was correct, and further testing was not needed. Well, she was NOT correct. The man had oral cancer. By time it was found, he already had a feeding tube in place as he could not eat or drink anything without aspirating, the cancer was way more advanced than it would have been (obviously) if treatment would have been started months and months before.

 

[Phil M]

I too had my doubts. I have had neck issues for many years that was like whiplash, and it was pretty ironic that mine is bulbar. And they did not see much of a problem in my mri's either. Mine gets so bad it will hurt all the way in my chest, and my scalp will go numb! I see the best neurologist we have in the south, and he insist it is als, and I feel certain that he is right now.

 

[NotALS!]

I went to see a spinal surgeon last week and he recognized my neuro's name and said "oh, he's very competent" so i knew I wa sunk. He wasn't going to look for any other answer that ALS. He ordered some tests but I'm not expecting anything to show up since I've already had them all done a few months ago.

My neck is killing me and not getting any better. The stress is overwhelming and I'm exhausted. I feel like the progress I made being on ceftriaxone is being undone. I'm too terrified to go to another neurologist and hear ALS again.

How do you cope with a death sentence?

 

[Lavender Lady]

I do believe in God and draw upon him for strength each day. I also have to live each day and enjoy the time I have with my family and friends. I try to find other things to fill my day besides constantly thinking about this disease. Don't let this disease still the joy out of life you have left, which could be many years.

 

[NotALS!]

I wonder if I would get a fairer diagnosis from a new neuro if he didn't know about my previous ALS diagnosed? I can give him all the tests but none say conclusively ALS. That was just my first neuro's opinion. Just a thought.

 

[Alyoop]

I do not think many neurologists take the diagnosed of ALS lightly. why don't you take a look at the thread about classification of ALS/MND.
Most of the Drs are very careful not to give someone that dX with out alot of evidence pointing in that direction.
I went to 4 neurologists, with unexplained symptoms and decreasing mobility. My doctor who was also a personal friend had just labelled me as a neuroltic neurologists wife, and had many many months before, just stopped examining me or even listening. It ate away at me so badll, that I had no self esteem left. I got very depressed and thought seriously about taking my life.
Now that I have found a neurologist that started from scratch and said I had some form of MND, I have actually found myself again. The Dx actually helped. With a Dx you can understand what is happening to you, and get on with living all the time to the max.
Stressing over what it may or not be destroyed me.

What i am trying to say is , by all means seek another opinion, but you also must consider that they may be correct, and if so you need to try and let lose the feelings of panic, and grab the chance of loving everything that is "you", and everything that is around you.

Its hard, I could not do it without GOD helping. He has been amazing. I know that you are loved and many here are praying for you.
Bless you
Aly