Is it REALLY neuropathy?
 

My symptoms have been a little strange so I thought I'd start a new thread. I'm new here and young(ish) (age 24) so please be gentle on me.

For 8 months, I had a gradual onset of the below symptoms (in order):
Headache, Flu, Paresthesia (tingling) in feet, paresthesia in hands and face, shocks, pain along nerves, pain around joints.

Due to the ascending nature of it, I assumed small fiber neuropathy. Most tests (including ANA, Lyme, EMG, NCV, etc...) have been normal.

The neurologists shrug and the medicines they prescribe (Lyrica mainly) don't work. (What else is new?!)

So what is it? That is the question!

I have theories I would love to bounce around with people:

1. Cat Bite: I was bit by a sick cat I was cat-sitting a few months before onset.
2. dTap vaccine and Flu vaccine: I received both two months before onset
3. The flu: could this be post-viral? Where is the literature on this type of neuropathy?
4. I'm uber tall (6'10"). That must be a risk-factor. Multiple nerve entrapments?
5. Is it neuropathy at all? Could it be muscular? Connective tissue?
6. I'm crazy. I've had anxiety and somatization forever so maybe this is "just stress"?

Thanks for your time reading and your thoughts. I'd like to prove the doctor's wrong on this one so I'd love your help. :hug:

I tend to think, 1, 2, or 3, or a combination of them.

A cat bite often gets red/swollen, and shows infection. There may be fever and/or swollen lymph nodes. You can get tested for
bartonella I think.
this link explains all the bacteria that may be in a cat bite:
http://www.medscape.com/viewarticle/739023_5
If you don't belong to medscape, you can join free very easily and keep your account open for any future visits.

2) the vaccines really could be culprits.

3) and post viral damage is real, and maybe self limiting, with a recovery period. (shingles pain does pass for many, but not everyone, and some have lingering nerve symptoms).

I will give this example using myself.... I am pretty stable all these years with my PN, but if I get MSG in food by accident from a carry out or restaurant, I can have a couple days of real flaring symptoms. The same with sudden falls in barometric pressure with the weather. So the environment may play a big part of our distress sometimes.

I certainly don't think you are "crazy"!

Seems there has been a few people on here questioning the tdap----my neuropathy started several months after a tdap vaccine, but I have never had a Dr. have even the slightest interest in the connection.
Mine is believed to be acquired/immune related and shows up clearly on the emg/ncv.
I don't think being tall causes neuropathy in any way, but it makes sense that being tall would mean the nerves are longer would require more healing time. I am tall as well (5'9")

I commented on the vaccine in another forum too. There isn't much evidence for it and even the VAERS database doesn't have many claims. But it makes sense if you're body overreacts and starts attacking the cells, provoking something autoimmune.

I know this is awful to say but I'm glad you were able to diagnose it with a positive EMG finding. Ideally, it would be nice if no one had it. But at least you pinpointed the system involved. Now for the healing!

PS: Tall people unite!!!!

Thanks for reading and replying, mrsD. I hope you would. With your knowledge on the subject, you've been helping me since before I joined neurotalk. It feels like I'm talking with a rock star! Regardless, this is no fun to have. I can't imagine having it for many years / decades / rest of my life.

I'm currently being driven by "there always is a cause; it's just a matter of finding it." I just hope medical science is advanced enough to decipher it.

cat bite? Do you think the cat carries a pathogen, have it checked out for common organism cats can carry. Diseases from cats would show up with more symptoms than just PN.
6'10 is huge, but it has nothing to do with Neuropathy, unless theres a disorder related to your height.

3)is the most likely to trigger you event. Flu/cold has been suspected of triggering autoimmune disease/nueropathy.
i dont the vaccine would cause neuropathy, if you had the swine flu vaccine, there can be change you can get both pn and autonomic, but that would be guillan barre syndrome, and its rare disorder as well.

Cat scratch/bartonella

It was one of my theories as well. I went to a lyme doctor and didn't even tell him I had a cat and he said my symptoms are consistent with bartnella (but he suspected from a spider or tick bite). I do get bitten by my bratty cat quite often though. She gets mad if I stop petting her. I don't know why they call female dogs bitches. ;)




https://www.nlm.nih.gov/medlineplus/...cle/001614.htm

http://www.ashdin.com/journals/jnp/235640.pdf

Hahaha. You are a funny lady!

when my youngest son was 10 months old, his lymph nodes began to swell.
His pediatrician ran so many lab tests, and had us worried about leukemia. It ended up being an infection in his blood caused by a cat scratch. A round of antibiotics and he was fine.
Who would think a simple cat scratch could cause such havoc in the body.

When I was first told I had pn, my gp said that i was tall and it was often found in taller persons. I never thought of it again until this post. Im only 6'3"-6'4" (im shrinking) and took his word for it because he is by far the best dr. I've run across.

Anyone else heard of this theory?

I do remember reading something like this once too. Something like; taller people and flexible jointed people are more prone to connective tissue diseases. Don't remember where I found that.

That is interesting......do you think it could be, the taller the person, the longer the limbs and nerves, making more nerve there for more chance of damage?
If there was a circulatory condition causing pn, maybe having further to circulate?

Yes.
 

Again, there aren't a lot of papers/studies that I can point to, but anecdotally, through this board and various other groups, there does seem to be a somewhat higher incidence of length-dependent neuropathy among the taller people, though this incidence seems to be more pronounced, from what I understand, among non-diabetics. ("Short" diabetic and impaired glucose tolerance people seem to get neuropathy symptoms around the same rate as "taller" ones do, however that is defined.)

I think northerngal has the right idea about the mechanism--those who are taller have longer nerves that might be more prone to compromise, whether through compressive or circulatory effects,than people whose nerve communications have shorter distances to travel.

I also suspect taller people may have more tendency to spinal problems and nerve root compression there, which can of course contribute to neural symptoms, and may be hard to distinguish from more peripheral symptoms. One orthopedist I know who treats a lot of athletes (he's a consultant to the NY Jets) speaks about the this tendency; he's said it's easier to compress/herniate discs, for example, when the spine is longer.

My podiatrist, who was really the first to diagnose me, instantly cited my height as a contributing factor. He said the neurologist who diagnosed me with bilateral carpal tunnel several years earlier was an idiot as that combined with being 6'2" (ridiculously tall for a woman), was a red flag.

I also have multiple nerve entrapments. The neurologist at Johns Hopkins found them everywhere he looked. He tested for HNPP but it was negative. One of my sons has had surgery to release an elbow entrapment, but that was either caused or aggravated by a car accident.

I was also very flexible when I was younger, as were my sons, both of whom have inherited the neuropathy. They are each 6'4". With CMT height shouldn't be an issue but I think it may show up earlier and move faster if you are extremely tall, the length of the nerves seems to make a difference.

An insurance company in an accident case tried to claim that my son had Marfan's syndrome. We do have some of the markers including unusually long arms, but not the others. His doctor joked that it would have been the first time a car accident caused Marfan's.

Yeppers. Lookup "Peripheral Insensate Neuropathy." I think it's more about the feet than anything else though.

Hey Susanne! You bring up a lot of good points. I was also slated for a Marfan's diagnosis but luckily it's not that bad. And it would be something if a car crash caused a genetic disorder. The whole medical field would turn on its head!

HNPP sounds just like me. I don't know how you would diagnosis it though apart from getting an EMG just at the right time.

There's also a crazy weird study that suggests that neuropathy is caused by old mitochondria. If it's true, I imagine healing would take longer too.

Check out this site on HNPP. It tells all about it and how it is diagnosed.

http://www.hnpp.org/genetics.htm

Simply put there is a deletion with HNPP and a duplication with CMT1A.

As far as CMT goes it depends on the type of CMT a person has as to when it shows up or progresses. I don't see any evidence that CMT shows up earlier or moves faster if you are tall. Just referring to CMT. CMT is an "inherited" peripheral neuropathy.

There are over 70 types of CMT identified so far and there is no end in sight. A lot of us have the more common types. The type would be an answer to CMT showing up earlier or moving faster. In the case of CMT it is not because a person is tall. It is an equal opportunity syndrome.

Sorry to get off topic here...but how did you know you had nerve entrapments--did they show up in an emg/ncv? I've read where diabetic neuropathy has responded to entrapment surgery and wondered if other types of pn would too.

They spent about 2 hours on my EMG/NCS at Hopkins, after keeping me under a heat lamp for half an hour- I was freezing. When he found the first ulnar nerve entrapment he went to the other arm and found another. They did do the genetic test for HNPP because of that, but it was negative, so CMT type 2 stood. He seemed to feel there was no point in further testing, and never suggested surgery.
I wondered too if surgery would help, but it flares up and goes away so maybe it isn't like the type where they can release the nerve. Since it is progressive and the nerves are deteriorating it is a different situation. My son was in constant pain before his surgery, with numbness, and did get immediate relief.
I still think height is an aggravating factor in all length dependent neuropathies, and CMT is highly idiosyncratic- everyone seems to be affected differently. It is like the pain component- many people with CMT do not have pain and retain feeling in their feet and legs, but if I have severe SFN with no small nerve fibers I am going to have a lot of pain, whether the cause is CMT, diabetes or something else.

Well the fact they found nerves on the EMG means that they found some affected large nerves (right? or am i simplifying this?).

Also, thanks for sharing this. I'm going to lock the doctor in during my EMG until I know we explored everything.

PS: Good word there, "idiosyncratic."

Yes, I have large fiber neuropathy (LFN) as well as SFN. Hereditary neuropathy causes both to develop- the first causing the sensory loss, the second the muscular atrophy. This is a little simplistic as the whole effect is greater than the sum of its parts.
Small, unmyelinated fibers do not show up on an EMG, that is why the skin biopsy is so important. You can have very severe SFN with a perfect EMG.
If you have pinched nerves they should show up on the EMG.

Yes, CMT is unique to the individual (ideosyncratic). However, that does not mean it affects tall people differently. Many types of it and none that I have found mentions anything about it affecting tall people like that. It's the type and subtype of it. Symptoms of CMT vary greatly even within the same family.

Looking at the general presentation of CMT, I'm starting to doubt how genetic this is.

Height may cause you to be susceptible to PN and it could cause other genetic disorders, but I think the total number of environmental causes for PN outweighs the inherited ones.

Not to say either is worse or more worthy of attention. They all suck. So... :hug:

CMT is an "inherited" syndrome. It is genetic and progressive no matter what you do. There are over 70 types identified so far with no end in site. Most CMTers have the more common types. Height is not in the picture for CMT. It is an equal opportunity "inherited" syndrome.

Bringing this thread back to life. Saw a doctor at Jefferson University but am still in the dark / lacking a diagnosis.

The tingling has gotten better (YAY) and is limited to the fingertips and toes.

However, I'm starting to develop more pain around the joints (knees and elbows especially). My knee is starting to give out and I'm noticing visual deformities (either swelling or muscle atrophy).

I've also developed a twitch in my right eye (three weeks now). And am starting to get twitches in my left foot.

I'm worried and could use some :grouphug:.
If you have any ideas, let me know.

Hi

I have similar symptoms, height, it is difficult being tall. I think we know little about these complex diseases and how to treat them. The only thing you can do is support your bodies recovery with gentle exercise and the right diet. Seafood and green veg is great. I do tai chi for arthritis by dr lam. Possibly some b vitamins. A good chinese dr could help maybe. Your bodies a complex orgasm it needs nourishment, complex diseases dont often have miracle pill cures.

Hey there from Georgia :)
 

I'll give you bunches of hugs ! :hug: :hug: :hug: :hug: :hug: :hug:

I am so sorry you are going through this. I have severe SFN that started strong in May 2013 after chemo ended and I was pre-diabetic also.

Yep they all suck big time. But we are here for you and each other.

Take care and keep us posted on how you are doing and what you find out.

And one BIG group hug :grouphug:

Debi from Georgia

Thank you SOOOOO much Debi!
:hug:

:grouphug: