Scared and worried...

[cathyst]

I was recently dx'ed with small & large fiber autonomic neuropathy.  At this point I am pretty much bed bound.  My symptoms come on like a steam roller when standing or sitting for more than fifteen minutes.

All the doctors I have seen have told me that I could drop dead suddenly from a heart attack, or lung failure due to paralyzed lungs.  I am horrified to say the least.  My symptoms continue to progress.  Last week there were two episodes where I was yawning and my chest muscles froze and I couldn't "fully yawn" because my lungs didn't have the space to expand.  

I want to know, if at my advanced stage, is death right around the corner?  Or, do people like me live in this horrible state for years.  There is so much I don't know.  My neuro told me that I am in the 4% that cannot be helped and not to go to any of the autonomic dysfunction centers.  

Please let me know if any of you are in my same position and IS death right around the corner.

Thank you so much for any input.

Cathy

[AireScottie]

MedHelp won't let you publish a private email address on the forum or your profile.  You might try a personal message to each other.

[cathyst]

Thank you so much for your reply.   I tried to add my e-mail address to my profile, but I don't think it worked.  I couldn't find an exact spot to enter it.  I'll write it now and see if it goes through...***@****.

I would absolutely love to hear more from you.   Do you have a family?  When did your symptoms start and what was your first symptom?  Exactly what are your symptoms at this point?  

I know it is hard, very hard, to find a good neuro to help with this condition.  What does your neuro provide for you that a neuro with less autonomic experience would provide.

Please give me as much detail as you are comfortable with, regarding your condition.

Thank you again for responding.  I look forward to corresponding with you.

Cathy

[Prof412]

Hi Cathy;

I know it has been a while since you initially wrote your post.  I was taken with your story because I have dysautonomia and also have large and small neuropathy, as well as a heart condition called POTS and problems with breathing.  I went to Vanderbilt and my experience there was less than satisfying.  The people there are amazing, they are very kind and empathetic to autonomic disorders. However, the main Dr. is a cardiologist and their main purpose is to try and conduct drug studies to see what helps and what does not.  The only thing that Mayo and Vanderbilt is good for is diagnosing but NOT helping with the symptoms.  You have to find yourself a good neurologist for that, which I am very lucky to have.  I am a researcher by nature as I am a History Professor and had to do a lot of the legwork for myself as MANY Dr's do not understand dyautonomia (which is the cause of autonomic problems) and often misdiagnois it as fibromyalgia.  You should not let yourself be scared, but put on your fighting gear, your reading glasses, and find a good Dr.  I am currently taking a one year medical leave of absence due to my illness, and I am going to assess whether I am able to lecture anymore.  I am only 41 years old.  I am also in the process of writing a book about this misunderstood disease.  If you would like to talk about some of your concerns, please let me know on this board and I will give you my email address.  Good luck, and do NOT give up!

[Heiferly]

I know you've been trying to find more information on large fiber neuropathy.  Are you able to sit at the computer much?  I tried finding information for you, but because this isn't really up my alley, I'm having trouble figuring out what will apply to you.  You may have better luck refining search strings for yourself.  

Go to this website; it's not the normal google--it searches for scholarly journals, etc.

http://scholar.google.com/

Search tips:
-Anything you want to find verbatim, put in quotation marks, e.g. "large fiber neuropathy"
-An asterisk acts as a wild card place marker, so searching for   neuropath*  will return anything with the words neuropathy, neuropathies, etc.; you can also use it for an entire word such as "small fiber * neuropathy" which might return results for small fiber sensory neuropathy, small fiber autonomic neuropathy, etc.
-Once you get your results, if you see many related results that pertain to something you don't want included in your search, add that term to the end of your search preceded by a minus sign; so if you originally searched for "large fiber neuropathy" and got many results about diabetes which you don't want, search for    "large fiber neuropathy" -diabetes  next time and it will take all those results out for you


I hope that helps.  

[AireScottie]

Sorry I didn't get back sooner; went to visit relatives, and long car rides are really hard on me!

All I know about Large Fiber Neuropathy is that it's tougher to treat.  If you've lost the main part of the nerve, it doesn't grow back.  Even with SFN, you can have breathing problems, because it's an autonomic function.  The symptoms get a lot more severe when the big nerves go.  If I were you, though, I would still go to CCF in Ohio.  The most important thing, from my understanding, is to find the cause of the nerves dying off.  If it's something treatable, then you wouldn't lose more function.  For instance, my Sjogren's could possibly start attacking larger nerves, so I need to make sure it's under control before I lose more.  That means I might have to take some nasty immunosupressants, but it's worth it to keep my nerves.  I know you're really sick right now, but I'm sure you'd rather keep your current level of functioning rather than just die!  So, at a minimum, I would go to Cleveland, and be insistent that the doctor either tell me the cause or test for a cause.  

I think you mentioned before that you have MS?  Does that cause nerve damage?  If so, are you positive about the MS diagnosis?  Did you have an MRI with clear MS lesions?  Make sure the doctor tells you very clearly what he thinks is happening, and then make sure it's backed up with as much medical knowledge and testing as possible.  Your doctors may all be right, and maybe you are going to deteriorate, but you should track down every possibility.  If you did have an MRI to confirm MS, you still might want to get a copy of it and take it to Cleveland, have them take a look, and make sure that it really is MS lesions (and not lesions from Sjogren's or something else!)

Also, what would you be saving the money for?  If you can't find out what's going on, your nerves will continue to be destroyed, and you won't be around to enjoy the money!

Very best of luck, and be as stubborn as a mule to get answers!

[mothersunite]

Cath,tell me what happened before you got sick,look up neuroendrocrinneimmunedysfunction,everything starts in brain,my little boy supposedly had small fiber nueropathy,ivig therapy nuero. wanted to give he could not under weight,parvo 5th disease.
Neuopathy,I dont know if your diabetic,spinal chord injury,there is always a reason you know yourself better if pain is bad talk to GP,you can email at ***@**** I went to Mayo with my son they are great all the interventions Docs wanted to do I did not Mayo Agreed but you need to tell me more I am not a nurse or Dr.just a mother who saw over 21specialist,for her son,husband and i  could not figure out?Neuropathy big name now Dr. Axelrod NYC severe Dysautonmia mainly jewish origin? Hope I helped go to google search channelopathy,Alabama great Hospitals cleveland great it all depends if you can travel always have help.Rita

[Heiferly]

Cathy,

Maybe try contacting these people:

http://www.aircharitynetwork.org/

and see if they can help.  

[Heiferly]

Cathy,

Cleveland Clinic, OH is excellent.  I had misunderstood and thought you'd already run that option through.  As for flying, there are organizations that help transport people with significant medical problems across the country to get to the hospitals they need to get to, and I hope we can connect you with one that can accommodate your need to be horizontal.  I bet we can.  It's 4 am here now, but I'll get on looking into that for you tomorrow if I can.  We'll figure something out.  

Goodnight,
heiferly.

[cathyst]

Heiferly -  This is such a dilemma!  I am afraid to take to risk of going all the way to MN in hopes the ER will admit me and take me serious.  I would expect them to tell me to make an appt.  With my dr. saying, don't go, I am really dragging my feet.  Rather, I am considering taking the money and going to Lourdes in Sept.  Is the Cleveland Clinic, OH a worthwhile place to go for someone in my position?  Flying is going to be a real problem for me, as I can only sit for a short while, before having to be horizontal.

What do you think of Vanderbilt?  It is a much shorter flight from S. Florida.  My sister's friend and husband are dr's at Vanderbilt.  I am thinking of writing to her to see if she can help me out.  That would probably be the smartest thing I could do at this point.

Thank you for your responses!
Cathy

[cathyst]

Aire Socttie-

I hate to put you on the spot, but can you explain what you have heard about lg. fiber neuropathy.  My doctors have given me almost no information.  Don't be afraid - I can take it!  The neuro I am currently seeing, and told me not to bother going to an autonomic dysfunction facility, is from the Cleveland Clinic in Weston, FL.  I do have an appt with Dr. Chapali at Cleveland Clinic, OH in August.  After what my dr. said, I am tempted to save the money and energy and just not go.  Please give me lg. fiber info.  That may help me make up my mind regarding the Ohio appt.

Thank you!
Cathy

[AireScottie]

Was this from the neurologist at CCF?  I wish I had answers for you, but I only know about the small fiber neuropathy.  All I know about large fiber is that it can be very serious.  But, duh, you already know that!  If it were me, I'd try to find out if there are any studies for nerve regeneration.  I know it's not a going concern, but I think there is some research being done with Parkinson's and other more well known disorders.  I really feel for you, and if I hear of any studies or fabulous doctors, I'll send you a message.  

Can you get any kind of ventilator for your breathing problems?  I know that was something that really scared me when I was first diagnosed, but so far, so good.

Have the doctors decided what's destroying the nerves?

[Heiferly]

I'm not in your shoes, so I can't tell you what to do, I can only speculate.  I've only read about the form of dysautonomia you are facing.  I strongly feel that if I were in your position, come h*** or high water, I would get myself up to Mayo.  Even if they told me not to come, I would go there and camp out in their ER.  Yes, I know of patients who have done this and gotten admitted that way.  This is your life.  Only you can know what is best for you and what you want, but if you want to fight than by all means, ignore the docs and fight.  We're all here cheering for you no matter what you decide.  

Gentle hugs,
heiferly