Anyone with similar acute onset and chronic course?
 

Hello all,

I have been dealing with neuropathic pain for 2 years now. It started one day suddenly after I came back from swimming. In the swimming pool I noticed a stabbing pain in my shoulder every time I made a stroke. Then I came home and all hell broke loose with tingling and twitching that started in my hands and quickly spread to my arms and legs over a few days. I also had an internal vibration sensation as if someone turned a cell phone inside my body.
Late on the tingling turned into very painful burning and the twitching stayed.

Over time the burning intensity in my calves diminished but at the same time it spread to my thighs and hands. These days the most painful are my calves and thighs along with my fingertips. My symptoms have always been totally symmetric and get worse *after* physical exercise or stress. If anything I feel better when walking.

I have been tested for pretty much anything under the sun: MRIs of the brain/spine, nerve conduction studies, B12 (was high - 980), diabetes, Lyme multiple times, autoimmune, thyroid etc. - everything normal.

Preceding the neuropathy I had what I would call the worst flu of my life as well as a very stressful life event which I am sure triggered this.

I have seen a few neuros and all of them are stumped. One suggested small fiber neuropathy while the other writes it off due to no autonomic issues whatsoever. My reflexes are normal, if a little bit exaggerated. I am taking Cymbalta and B12 + B1 + ALA + COQ10 + L-Carnitine + Magnesium + multivitamin for a year now.

I have no weakness that I know of, yet my muscles twitch, especially during flareups which happen every 2-4 weeks when my pain reaches very high levels. My symptoms also wax and wane throughout the day. For instance, my calves could be burning terribly around noon while my fingertips could be acting up later on.

Anyone had a similar experience with their condition?

thanks

Yep...we could be related. Started back of leg, went to arms, other leg, sometimes head. Lots of yuks and giggles with this.

But what I could advise you is to get a skin biopsy which will tell you if there is something going on with small fibers. Also if you are getting inadequate pain control, it is worth finding a neuro who specializes in this, and they can help you find the right meds. There are 50 or so of em out there, and sometimes it is a cocktail that works. If you live in a major city, you can find a neuro that specializes in this....I am NY, and there are folks who specialize, or should I say subspecialize in this.

pain
 

Yep, know what you mean, not exactly the same, my emg showed neuropathy. But have flare ups, I feel there is a mouse running up and down my leg, mine also didn't start so sudden, about month, and boom, I have pins throughout my body, and legs have muscle spasms, next day I am fine. Legs sometimes feel sore. Walking is better.
I also developed motor issues, which drive me nuts. Its a strange weakness and very slight tremor, that everyone thinks is stress. No way, I think I am about to get rid of most of my friends and family. I do get a reprieve, and feel like I am getting better, then the next day I am worse. Do you see a specialist in PN? I cant give you any advice, sorry, maybe someone elso on this board, they are so helpful, and nice Lynn

Feeling the same
 

Mine started 3.5 years ago. One of my neurologists thinks it is some viral infection or as he DX it as sensory GBS. The pains and the flares are real.
I found that relax, eating well, walking - help me alot, beside pilates that keeps my muscles streach.
We are in the same boat - more or less.
By the way - what age you are? female? male? I think in a way that hormones imbalance can "help" to the neuropathy onset.
Keep smiling...

While acute onset neuropathy is not as common--
 

--as slow, chronic progression, it does happen (it certainly did to me--full-body over hours/days with burning pain but no motor symptoms).

Very often, after the initial rush of horrible symptoms, the condition settles down. But often there's been major nerve damage, and recovery is not complete, but partial and patchy. Weird symptoms may persist for years, and even healing of nerves, as the growth cones fight their ways through tissue and attempt to reconnect to their afferents, can cause weird parasthetic symptoms--pain, tingles, fasiculations.

These may become less prominent in time, but never completely leave, and one may be prone to flares in times of sickness or stress--it's been estimated, for example, that about half of all people who are stricken with Guillain-Barre syndrome, one of the most well-documented acute onset demyelinating neuropathies, while recovering much function over weeks/months, still have residual symptoms or dysfunction years later, to varying degrees.

Most clinical reports of acute onset neuropathy end with the prognosis of "slow, partial recovery"--how slow and how partial depend on lots of individual factors. One should try to maximize the condtions for nerve healing with appropriate diet, supplementation, and exercise to tolerance.

to glenn
 

how one can know if it's neuropathy is one quick onset or a slow progresive one? since even if it quick - it also take several days. mine took 6 weeks. where shall I put it? or just after a while - several years - one can tell?

Have you had your rotator cuff checked? I assumed mine was neuropathy, but nope, it was torn. I am in PT now, and it helps.

Mine was a fairly quick onset. It started at the beginning of last November and in six weeks or so it spread like wild fire. It started with burning in my upper back, then to the side of my left leg, then the other. This is when I went to the neurologist. He took blood work and took an MRI of my lower back since I have back problems. The MRI was unremarkable, with some arthritis and such. He should have done my mid back and neck. Anyway after that he put me on gabapentin and that's it. It then spread to all over my body, burning, cramping, electric shocks, sharp pains. I'm trying to get a second opinion, but it's taking forever with the doctors. I wish I had some hope. I'm wishing the best for all of my fellow sufferers. :grouphug:

Hi, how does your neuro explain the persisting flares if it really was a version of GBS? Wouldn't the symptoms slowly and consistently diminish over time in that case?
Relaxing, eating well help me a lot too. Any kind of stress induces a flareup for me. I am male and 29 years old by the way.

As far as skin punch biopsy I don't know what good that would do since the treatment would still not change unless they find a cause, which they haven't so far. I suppose at least I would know what is being damaged, but I still wouldn't know if it's autoimmune, viral, metabolic etc.

I have been reading Norman Latov's Neuropathy book and in it he mentions that sometimes small fiber symptoms precede the involvement of large fibers and hence motor symptoms. I hope this is not the case with me, but the fact that I have twitching tells me that the motor fibers must be at least partially affected.
Did anyone here experience motor symptoms after years of purely sensory ones?

All of this is frustrating....
 

It took me a year and a month and three neuros to get properly diagnosed.
I had what was initially diagnosed as a 'plain old simple sensory neuropathy' and then was told to look it all up on the internet! I wasn't 'net' conversant at the time and the public libraries didn't have much info that was current on it all other than the two paragraph basics.
According to the notes my neuro writes on my 'patient sheet', I've either CIDP or an agressive immune neuropathy.
That all said? Here is a post from the 'neuromuscular' forums here that cites some very good references for you:
http://neurotalk.psychcentral.com/thread38797.html
In my own case? I'd had a nine week long bout of pneumonia, followed by a short return to health and 6 weeks after recovery from that I started first with the classic numb toes, which progressed to the feet and ankles and my fingertips to almost my elbows. It took about 4 weeks and five nights of not being able to SLEEP to call my GP and was told to go to that ER. The numbness and severe burning progressed further in an ER where I waited a VERY LONG TIME and the burning progressed up to my knees! I was hospitalized for 3 days and that 'rest' did a real bad number on my muscles and coordination... After 9 months of more progressions, and the neuro 'on call' from the ER being VERY unresponsive to concerns as the numbness and pain progressed up my torso? I went and got a second opinion...I got the third as neuro #2 wasn't fast enuf [in my mind] in terms of how this pain and numbness w as going! I see neuro #2 w/#3's
knowledge and permission, as I live in the suburbs and driving downtown by myself could be a danger to all, including me. One of the factors about many neuropathies is the extreme fatigue that comes with it...that tiredness CAN and does affect/effect the muscles!
Do keep in mind, that my very first set of nerve conduction tests didn't show that much damage [about two weeks after the hospital] but a year later? Showed LOTS. Unfortunately it often takes time to really show damage.
After reading criteria for testing of CIDP? I've got it or a very close cousin. And, YES the treatments are pretty much the same, tho some are invasive and others can have long term serious side effects.
The definitions of immune-type neuropathies are changing, they used to be called Acute: meaning onset to the point of paralysis usually within a couple of days; Semi-Acute: from 3-8 weeks after 'onset'; and Chronic: which means it lasts a long time and doesn't go away w/any treatments. Actually CIDP used o be called 'chronic GBS until about 4 years ago.
The causes are as for most neuropathies: acquired [such as the flu, diabetes or other med issue]; Toxic [such as alcohol or chemical exposure]; and lastly, Hereditary-this is the hardest to get docs to assess, as you have to know your family history very well to have any ideas on this. IMHO tho, cancers can help cause severe neuropathies-tho who your neuropathy appears, is determined by the WHEN of the cancer discovery and treatments. I say this because I've both. Tho the Neuropathies came first by 3 years. They could be independent or connected-but we shall never know.
That is why I would encourage each of you....chemade, IVpound, sadfeet, amit and Hope 15 to be somewhat 'assertive' in seeing testing and maybe treatments as available. But, not soo assertive that you put any new or current doc off in trying to help you. Do it in steps and you might actually have some success! If you can, call back and see if you could be put on a 'cancellation' list? It means going at the drop of a hat, but it can get you IN sooner. AND you don't have to see the chief cheese of the practice - The others in that office are likely to try harder.
I was extraordinarily LUCKY with both Neuro #2 and Neuro #3! I do KNOW that! I just hope and hope hard that you find these kinds of docs that are curious and will listen to you and actually try and help you!
:hug:'s to you all. And do NOT GIVE UP! - j

I was going to talk about distinctions--
 

--among what most doctors consider "acute", "sub-acute", and "chronic" onset, but dahlek beat me to it. :p

The borders between then are a bit arbitrary, but yes, the major differences are how long does it take to go from no symptoms to major symptoms. In a chronic case, the progression in insidious in that one first starts noticing little things that gradually increase in severity and intensity over months/years; with the other categories the time from "nothing" to full-blown symptoms is much shorter.

And yes, chronic inflammatory demeylinating polyneuropathy (CIDP), has been considered the sub-acute, lingering form of Guillain Barre syndrome by many researchers (though there's some dispute about this). There are some similarities--autoimmune demyelinating attack, infectious prodrome, etc., and, in many people, a relapsing/remitting (flares) characteristic that is somewhat common in autoimmune disorders.

It's very hard to analyze these things at the time they'e going on--one is generally much more worried and concerned about the situation that is ongoing--it's only in retrospect that most can generalize about the timing and appearance of symptoms. It's why many people keep a diary or other written record of how they feel, so they can note the differences day to day, week to week, month to month.

GBS? to chamade
 

I think only the time will tell us what is it. since there is no test to say if it one onset or something that is very slowly progresse. For meanwhile - I'm trying to be optimistic and do my best to help myself.
Next month I'm going to see a new neurologist here. hope that she will tell me more, but also - there is no cure, but time, good diet and relax.
About twitching - my neuro said that - these are common complains of neuropathy and that this means anything. (So, even if this is not true - what can we do? so I choose to believe him).

diary - to glenntaj
 

I try to keep a diary of my symptom - but I found that I don't remember what was the "burn" feeling like a year ago in comparision to now. When it burns - it burns.
So as you said - we will know if it progressive kind of neuropathy or stable one - only after a while.

I would like to offer to make somewhere in this forum - some kind of a table with the name, since when the neuropathy, what kind of N. ect. It will help the new here to learn more about the other in this forum.

I have found that my burning has become more of a deep aching over time. This is all so weird, I guess in 5 years looking back at all this some of us will have a clearer picture of the what is going on. In the meantime I am doing everything i can to eat healthy, stay away from processed foods, take the recommended supplements and get enough sleep.

BTW, does anyone here have scoliosis? I do and I know it is associated with certain nerve disorders sometimes...

Today my hands burn and tingle while the cellphone is going off in my right leg:eek: The vibration thingy is the only asymmetric symptoms I have.

Also did anyone experience eye pains with their neuropathy? I did in the beginning and still get it very rarely.

amit--
 

--these two sites should help regarding classificiation of neuropathy:

http://neuromuscular.wustl.edu/naltbrain.html

This is the Washington University at St. Louis Neuromuscular database--while written for doctors, it is an excellent overview of neurological conditions. The link above is the neuropathy classification page (we also have it in the Useful Websites "stickies") and it breaks down neuropathy type in several dimensions--cause, patttern of onset, anatomical distribution, functional disruption.

http://neuromuscular.wustl.edu/naltbrain.html

This is the classification page of The Neuropathy Association. (A number of us have commented on the inefficiency of the message boards there, but they do have a good informational database on the condition.)

I have also found over time that in the case of my legs, I have much more of a deep aching, cramping and other funny sensations going on then the initial burning which was my first body symptom. Some of the burning that I do have is very strange as it goes down certain strips or areas of my body. My entire back actually burns the worse these days. Like you, I also have scoliosis...

My neuropathy started on a day when i was extremely stressed out. I ignored for about a month. It was first on my reproductive area then on my tighs, in about a month it had spread to my calves and feet... That was 2.5 years ago.

Something that makes me wonder is that my neuropathy started on the top of my legs not on the feet. Most people get it first on their feet. I wonder if it is related to scoliosis now. I was told i have a slight scoliosis. I also have some lipomas on my low back. I wonder if they're pressing some nerves and that be causing my neuropathy....

Is there a chance the lipomas are causing my neuropathy?

"member list"
 

I know these sites. I didn't mean classificatin of neuropathy, but a kind of "member list" of the members in this forom - how old they are, since when we have our neuropathy, what kind of neuropathy - idiopatic, diabetic or other. All this - just in case that we would like to "talk" to people with the same history. This member list can be in a table - some where in the forum - where it will be easy to enter and learn about colegues. (sorry for the English mistakes)

I have a lipoma in the brain corpus callosum, of all places, as discovered on the MRI. The neuro doesn't seem to think anything of it. Yet, can't the body sometimes produce antibodies to fight "cancers" that also affect the nerves? It is called paraneoplastic syndrome and I wonder if it could be related to that.

I have cervical scoliosis which could explain my body wide symptoms. Also, it all started after I overdid it with swimming and exercises and I wonder if I tweaked my cervical spine somehow - yet they don't see abnormalities on the MRI.

I see that you're from the SF area too! What doctors did you see for your problems so far?

First I went to the UCSF, now I am seeing someone at the CPMC and just today made an appointment to see someone else at the UCSF again.

relax
 

If you didd the all blood tests recomnded - it won't be paraneoplastic syndrom. Lipoma is not "cancer".

Since when do you have your NP symptoms (I don't remember - sorry)?

Hi chamade, small world...:)

I saw a private neurologist in Castro Valley at first, but I wanted a second opinion, so I went to my primary doctor and asked about a referral to UCSF, but he said they didn't take my insurance. He then said he would like me to see someone at Stanford and gave me a referral, but it's taking forever for them to call and set it up. I am suppose to wait for them to call me and I am about ready to call my doctor back and ask him whats going on. Do you like UCSF?

My lower MRI wasn't that bad, but I have had a lot of back problems and pain. I need to get a full MRI on my mid back and neck.

Can you tell me what is the CPMC?

AMIT: It started suddenly in march, 2007.

Hope: The CPMC is the California Pacific Medical Center in Pacific Heights. They have a neuro there who specializes in inflammatory peripheral neuropathies and is a big shot (wrote CIDP treatment guidelines etc.). So far I haven't had much luck with him because no test is showing anything. Next I will ask him to do a skin biopsy - he seemed resistant about it last time. This neuro (Dr. Katz) also works at the Stanford hospital, so you might run into him.
I would recommend going to the CPMC if you can, because they run tests the same day, at least they did for me (MRI and EMG/NCV).

Last I saw the UCSF neuro was a year ago and they suspected small fiber neuropathy, but wanted to do a lumbar puncture. I chickened out and never went to the follow up appointment, which was a mistake in retrospect. I guess I was just hoping the neuropathy would go away, as it seemed to be lessening at the time.
When I have my next UCSF appointment I will have them do the puncture if they still think it's necessary and whatever other tests they want to do.

Stay in touch, maybe we help each other if either of us finds something out about the diagnosis, since our problems are so similar.
Good luck with Stanford, let us know how it goes.

Thanks chamade, best of luck to you too, and yes, lets definitely stay connected. I think exchanging information can most certainly help each other. I will also keep the CPMC in mind....