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Avatar universal

All comments appreciated (where to go from here?)

Any suggestion / guidance would be much appreciated.  I'm not sure where to go from here and my doctors don't seem to be either.  I haven't been to a neurologist yet and am not sure if my symptoms justify it.

I'm a 35 year old caucasian male and have been experiencing a host of symptoms - some physical and some neurological - for at least 10 years.  Over the last 3 months I've had symmetric numbness in my two outer fingers, up the outer edge of my arms and in my outer toes and up my legs.  I've also had some lightheadedness and some unsteadiness (I wouldn't call it vertigo as I'm not dizzy) over this period.  Tingling in my two outer fingers is a fairly regular thing, though it seems to come and go.  It's particularly acute in the morning.

Other neurological fun and games:
(a) when I sneeze I often get shooting pains down both my left and right arms that subside in under a minute.
(b) I often experience "spots" of pain.  I would liken it most to the feeling you get when your funny bone takes a whack.  They subside in 1-3 minutes.  They're not symmetric and though I tend to get them into the palms of my hands most often, I've gotten them in my arms, legs, shoulders and privates.  Is there a name for this?
(c) I get alot of muscle "twitching".  It does not persist for very long and tends to move around.

I had an MRI of the brain two weeks ago and that came back normal.  Various x-rays, bonescans, etc haven't shown anything. I don't perceive any muscle weakness.  I take Celebrex for various rheumatalogical symptoms.

Thanks much.
13 Responses
Avatar universal
Some of the symptoms you describe, particularly the sneezing and and funny bone like sensation, could be consistent with a nerve problem in your neck. Patients with bulging discs or nerve impingement within the spine typically complain of similar symptoms. Therefore an MRI of the cervical spine would be reasonable. If you have not seen a neurologist it would be advisable. They can help to further investigate your symptoms which are diffuse. Perhaps an EMG (test to measure the muscles and nerves) would be useful. Other possibilities which could be screened include vitamin B12 dysfunction, lupus, other connective tissue disorders, vitamin E dysfunction, and possibly lyme disease. Good luck
Avatar universal
Just as an addition, my rheumatalogical symptoms are described below.  Thanks again for any thoughts - I'm not sure where to go from here.

Longer term, I have been seeing a rheumatologist and am taking Celebrex for arthritic symptoms.  I get the usual batch of blood tests every 6 months and nothing exceptional ever turns up.  I have a tendency toward mild polycythemia.  I also had the genetic test for hemochromatosis which came back negative.  

Most of my physical pain is in my neck, hands and feet.  It seems to me as though it is focused on my tendons (esp achilles) but I can't say for sure.  It is almost always symmetric.  I also have bouts of fatigue.

Aside from some unexplained episodes about 20 years ago (vision disturbance, and a separate "illness" that resulted in incredible fatigue but was never diagnosed) I've had the following history:

15 years ago I started to experience a fair amount of pain fast walking or running in my shins.  If I ignored it, it would become quite bad and persist outside activity.  In some cases it bothered me for months before it got better.
12 years ago, I gave up golf because I couldn't play any more without substantial pain in my hands - it felt like tendonitis and took months to heal.
6 years ago I found I could no longer use a "normal" computer keyboard without alot of pain in my hands.  I had it in both hands and a neurologist gave me some tests for carpal tunnel which came back negative.  I started using specialized keyboards which are much better.
5 years ago I developed a large number of small blisters on my fingers and toes.  At their peak, there were as many as 50 on a single finger.  They were clustered around the joints.  This would subside and recurr, but each recurrence was less severe and now I only occasionally get a couple on one finger or toe.
3 years ago, I started having noticable morning stiffness and I was having some substantial joint pain (IOW it was bothering me).  My GP gave me methotrexate for a couple of months and that was great.  When I go to see the rheumatologist, I ended up taking celebrex which has seemed to limit the long term inflamation issues I was experiencing.
Recently I went to a research hospital for a second opinion on the rheumatology side and they said it sounded like spondylitis might be a possibility though I didn't really fit the pattern.  (I don't have any lower back pain)

Other physical fun and games:
(a) Chronic sinusitis
(b) My left eye gets red and itchy in the evening.  The corner of my eye twitched for a year straight - though fortunately thats subsided.  I was checked by an opthamologist and he just noted persistant low level conjunctivitis.
(c) Various bowel issues for the last 15 years (esp dumping syndrome).  Various tests for IBD come back negative.  Had a flex sig done and the doctor said there was alot of spasming going on.

In any case, it's insidious and progressive.  Any thoughts and potential new directions would be appreciated.
Avatar universal
Your symptoms could suggest fibromyalgia. Check out this list of indicators-- many things you talk about are listed here:
http://www.fmnetnews.com/pages/criteria.html

Tests like MRIs, EMGs, and standard bloodwork usually come out negative. That does *NOT* mean that this condition isn't real, or that you don't need the Celebrex or other treatment. It just means fibromyalgia is not understood yet.
Avatar universal
have you been checked for vitamin b12 deficiency or viral syndrome such as herpes?
Avatar universal
Hi Joe:
The "blisters" you describe having on your fingers and toes - did you also notice any around your abdomen/upper thighs? Also, did these "blisters" look like small, dark red/black, bumps that bled when scatched? Do you experience "burning" and/or "shooting" pain in your hands and/or feet, especially when it's hot out or if you have a fever? You mentioned an opthamology exam noted conjunctivitis? Did the DO also perform a slit-lamp exam, if and so, did he/she make any mention of "corneal opacities"?
If yes to these queries, I would look up Fabry's disease. Your symptoms sound very similar to my own (except location of "blisters" - angiokeratomas and bowel symptoms), and I am being tested for this lyosomal disorder now. Your age (35) is a little off for developing these symptoms now, but it has such variable presentations, who knows?
Best of luck in nailing the problem down...
Avatar universal
There is a diagnosis of undifferenciated connective tissue disease.  In laymens terms, it means we know you have got some rheumatological disease, but don't know which one.  I have read a  lot about it and many people will have normal labs with this.  Or the labs will come and go with abnormal readings.  The literature says it is usually connective tissue disease in the making, and will usually evolve into a recognizable disease.  It sounds to me as if it is rheumatologic in nature.  Have you ever had biopsies of these blisters or any of the other areas you are having a problem in.  My daughter has a rare autoimmmune disease, and it has been our experience that she may have normal labs, but when biopsies were taken they would show the real problem.  If you have these blisters pop up again ask for them to be biopsied, and take pictures of any weird skin things that come up.  It also helps to keep a journal of symptoms to helpkeep track of everything.
Avatar universal
Thanks much for the comments so far - there are some new directions for me there.  I really appreciate your thoughts.  It's hard to stay creative in searching for solutions to these things sometimes.

Some clarifications for the folks who asked and are otherwise interested:

o I don't think Fibromyalgia fits.  Though the laundry list of general symptoms does overlap mine quite a bit, the touch points don't really make any sense for me.

o Given my lifestyle something like herpes would be very unlikely.  I suppose it's not inconceivable but...  I do know that my doctors have asked me numerous questions about STDs / Drugs / etc and maybe run a few tests but theres nothing indicative there.

o The B12 thing is interesting but I haven't ever tested even close to anemic and my blood cells are within normal size constraints.  I have mild polycythemia (high density of red cells) and tend to test a little high on iron.  That's why I took a shot at hemochromatosis but it doesn't look promising.  Is there something more to do here?

o On the blisters - fun little things - I thought they were an allergic reaction and wish now that I had photos of them since I really don't get many that "emerge" anymore.  Instead they tend to stay below the scar tissue generated by prior batches, and the severity of the outbreaks is waaay down.  The were filled with clear liquid and itched alot.  I do get another "rash" periodically which I don't perceive as blisters and develops over my lower abdomen and to the left and right just above my hips.  I had a similar outbreak around my kneck/shoulders but that only happened once or twice.  My eye exam was otherwise normal, aside from the conjunctivitis.  Also, I do get "shooting" pains, often in my hands but often in other places as well.

o On the "undifferenciated connective tissue disease", that's probably where I'm at now.  My concerns are more because the progressive nature of *whatever it is* is apparent to me now.  The re's stuff from 10-15 years ago I never associated with this kind of disease that I can start knitting together now.  I often feel as though I just need to wait until something really overbearing occurs and then a diagnosis will follow and I'll be able to be more directed.
Avatar universal
Hi Joe, I would go along with Ozark about the b12 concerns. I think this is an area which you definately should have fully investigated.

You mentioned that your blood tests had never shown signs of anaemia and that your blood cells were of normal size. The problem here is that you do not have to have anaemia and your MCV (mean cell volume) does not have to show megablastic (enlarged) blood cells. The unfortunate thing is that many doctors think that if these tests are normal, then your problem can not be related to b12 deficiency.

Whilst these are abnormalities which can indicate b12 deficiency, the fact of the matter is that some people can be b12 deficient, with all the symptoms associated with b12 deficiency (including neurological symptoms) and not have anaemia or megablastic blood cells. In fact, for some reason, those that don't develop such abnormalities can have worse neurological symptoms than those that do.

Do you know what your serum b12 level was. If it has not been taken because you did not have anaemia or large blood cells, then you need it taken right away. If it has been taken do you know what your result was. If you are in the US, many doctors think that if you are not below 200 pg/ml (picogramms/millilitre) then you don't have a problem. This is definately not the case, published studies have shown people suffer deficiency at levels far higher than this.

If your serum b12 level is anywhere in the 200's your doctor should want to check your methylmalonic acid and homocysteine levels as these can often identify true deficiency before a serum b12 level drops into the abnormal range.

Owing to the fact that you have long standing stomach/bowel problems, this could well be the cause of your deficiency, if that is your problem, and of course it may not be. Because of your problems they should also check your intrinsic factor antibodies and parietal cell antibodies which may help to identify any problem.

As I mentioned earlier, this might not be your problem, or it might be only part of your problem. What is for sure is that b12 deficiency causes devastating problems if not recognised and treated. Unfortunately there are many people who are identified far too late and suffer needlessly.

Best of luck
Graham
Avatar universal
You're getting lots of help here & lots of conditons! A simple ?
about the blisters? Are they kinda' like tapioca under the skin?
I had this weird conditon that started on my palms & itched then
sore/red. Mo. later a few on my feet. Dr's had no Dx. It went on
from age 29-35 off/on. Worst itching was after holding nickles!
Later it was during work touching money & tools. Finally, a Dr.
said try cotton gloves a few days & touch only stainless-steel
metals. I got better! `Dyshidrosis'/`dyshidrotic ecxema'. Nothing
explains it. Hits mostly on palms/feet/toes. Starts around that
age & if you touch your eyelid, fingers can give conjunctivitis.
My system became hyper & I then added rashes at waist/thigh area.
Dr. said change laundry soap & avoid elastic at waist. Things
settled down. Can't wear/touch cheap jewelery or `nickel' can
go thru skin. I was achy alot till I bot $$$ski-poles. Trial of
latex gloves made worse, hence elastic. Still get rashes if long
contact but most settled by 40. Aging sometimes helps + humor.
I really suffered on my hands playing caddy! Carts/bags have alot
of cheap metal! I use gauze under latex-band @ blood-draws. It
just disappeared one day. Hyper-sensitive is only treatable by
avoidance of ? I have body aches left from sports injuries of yrs
ago. You sound like you're athletic & push yourself alittle? I
too see a Rheuma. He took me off Celebrex. Stomache felt better.
I stopped multi-vites w/ nickel & muscles felt better. Allergy
tests were neg. You may never have an answer. Share `if find'?


Avatar universal
You can even test high on b12 and have severe neurological deficiency signs.  I almost died from it several times while taking lots of cyanoB12.  The difference is that methylB12 is the active form that actually works in our bodies.  In my life of this I have had multiple deficiency crisis', usually triggered by either an illness ranging from common colds and streps and more severe, and physical trauma and probably vaccines.  The neuropathies just kept getting worse and worse with each crisis.  It can cause autonomic neuropathies as well that affect the entire digestive system, lesions anywhere from the mouth down in the digestive system, sore burning red tongue, ataxic gait especially in the dark, bilateral neuropathies and a whole lot more.  It can also cause extreme longlasting fatigue and muscle pains and burning.  The pains move around as different parts are damaged.  Also muscle spasm and cramps, and headaches can be present. If a person takes cyanoB12 they usually don't have the megoblastic anemia.  Most perople only have some of the symtoms.  I started having massive noticable improvement in 1 hour after taking a sublingual 1000mcg methylb12; the severe abnormal fatigue of 15 years standing, one kind of muscle pain of 15 years standing and a lifelong depression lifted as "the lights came on" for one of the few times in my life.  It was literal too as my vision literally brightened.
Avatar universal
Again thanks for the comments everyone.  I'm going to get some more testing done and will post in a reply somewhere if I learn anything.

Avatar universal
I noticed you said you had the genetic test done for Hemochromatosis and it was negitive. This test is now inconclusive. You must have the blood test done for this disorder to rule it out! They should take at least 3 viles of blood. Ask your doctor to rule this out the right way.
Good Luck!

If anyone would like more information on Hemochromatosis, I would be happy to email you links on it. You can email me at ***@**** in subject please put Hemochromatosis thank you!
Avatar universal
I noticed you said you had the genetic test done for Hemochromatosis and it was negitive. This test is now inconclusive. You must have the blood test done for this disorder to rule it out! They should take at least 3 viles of blood. Ask your doctor to rule this out the right way.
Good Luck!

If anyone would like more information on Hemochromatosis, I would be happy to email you links on it. You can email me at ***@**** in subject please put Hemochromatosis thank you!
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