Cold Water sensation?

[ellenc]

I have been experienceing odd tingling, numbness,coldness steadily in both hands , feet and legs fo almost 11 months.
All tests - brain and cervical MRI's, EMH and nerve conduction tests, evoked potentials,clinical exams, exhaustive bloodwork for lupus, diabetes, thyroid, etc have been normal and clear. I am basically in limbo with no diagnosis, but my neuro is adamant that this is not MS,ALS of PN.


I have recently developed a bizarre sensation of having cold water droplets "sprayed" on me - it can happen anywhere on my body for a brief moment. I seem to recall reading on this forum that that is a CNS "symptom" . My question is, should I be newly concerned about this symptom - should I call my neuro? Or is this merely another manifestaion of my mystery problem? Is this "typically" a CNS proble, or can it come from other metabolic causes?

Thank you.

[[email protected]]

Have you get any diagonosis yet?  I have developed cold sensation
range from just cold, cold water to freezer burn cold sensation for different part of my body for 2 months.  I start the process of seeing neurology and doing MRI.  It is very frustrating.

[George]

Natalie..I've had those problems described by you since the  early 80's. I used to descibe it as someone sprinkling cold water over my legs or just droplets of cold water hitting my legs. People looked at me like I was nuts!!
After complaining of neck, back, and lower back pain for 20 years they finally admitted that I had 2 blown cervical disk
and stenosis and I just had an ACDF in August removing C5 and C7.
Now my lower back is killing me and I still get those feelings.
I think it's nerve entrapment but after all these years I just try to forget about it and stay busy.
I've also had numerous test that came up negative although when I first had symptoms they put me in the Hospital for a week to test for MS. It's almost like something got short circuited causing problems in your peripheral areas. The nerves in my legs are constantly giving me small shocks on a continual basis. I've just learned to live with it.
Take care...

[Suzie Lee]

Ive been experiencing this cold water sensation sine last Nov.  It then makes my leg feel weak.  Ive had also with this twitching for 2 anf a half years know.  Been to a Neuro.  and  2 second opinions during that coarse of time.  Ive had 2 emgs and nerve conduction tests.  I think we all tend to fear the worst,  and my life hasnt been the same since this all started in Feb.  98.  Ive lost some size in my legs because of it,  and the reflexes in my legs also, and they cant tell me whats wrong.  Has anybody  recieved chemo.  or had shingles,  or suffer from depression or is stessed out alot.......But back to the water sensation...it can happen any were,  but its mostly in the bottom  half of my body.  When it happens  I feel I have to check for water dripping down my leg.  I do  continue to exercise because I feel if I dont I might waste away.  I have given up gluten contained foods.  Im not going to give up trying to find out whats wrong.  Its good to share similar issues with someone...Thanks for reading.. If you would like to email me my address is ***@****

[Suzie Lee]

Ive been experiencing this cold water sensation sine last Nov.  It then makes my leg feel weak.  Ive had also with this twitching for 2 anf a half years know.  Been to a Neuro.  and  2 second opinions during that coarse of time.  Ive had 2 emgs and nerve conduction tests.  I think we all tend to fear the worst,  and my life hasnt been the same since this all started in Feb.  98.  Ive lost some size in my legs because of it,  and the reflexes in my legs also, and they cant tell me whats wrong.  Has anybody  recieved chemo.  or had shingles,  or suffer from depression or is stessed out alot.......But back to the water sensation...it can happen any were,  but its mostly in the bottom  half of my body.  When it happens  I feel I have to check for water dripping down my leg.  I do  continue to exercise because I feel if I dont I might waste away.  I have given up gluten contained foods.  Im not going to give up trying to find out whats wrong.  Its good to share similar issues with someone...Thanks for reading.. If you would like to email me my address is ***@****

[Felecia]

Dear Jan
I found this web site while searching for info about having an abnormal sensation of water spraying on my arms. I recently went to the doctor because over the last month every time I cough or take in a deep breath my hands tingle. He did a chest x-ray wich came out normal. My symptoms have seemed to progress, now other stimuli such as a loud noise or something that startles me creates the same sensation only it also goes in my face and up to my elbows.I'm going to make an appointment with a neutologist in Spokane tomorrow to be evaluated but this thing you are talking about souds right. I have had irratible bowels for years and chronic fatigue, I'm only 30 yrs old.I remeber last year I was roller blading and I felt this stinging sensation in my arms, it left these little red dots on my arms that are still here today.My doctor isn't worried about them since my cbc was normal.Anyway if you have anymore info my email is smiles_83858***@****.

Sicerely Felecia

[Jan Bailey]

Thelma, I don't know which diseases show red ragged fiber...I think there are several, because, as I talked with my neuro, I asked him if he had any idea which mito disease I had, he said "No" and I am of the impression that based on the frozen biopsy with four pieces of tissue, he will never know because it is frozen, not fresh.  I think he said he doesn't do fresh because they are notoriously inaccurate...his opinion surely, but he is very smart and trained at Duke.  I am trying to post on this forum and find out how important it is to really know which disease you have because often, they treat them the same anyway re. enzymes, vitamins, etc.  Please e-mail me at ***@**** when you come back and I'll give the the low down on the "cocktail(s)" he has told me to take, what the Mitochondrial association says to take and what I actually am taking.  This is so frustrating, as there is no consistancy in any of the information out there.  Talk to you later, and enjoy your week out of town!  Jan

[Thelma to JanB]

Jan, Thanks for the reply. My first biopsy ( a needle punch type in my right thigh muscle) was May 1995 At University Hosp, London, Ont.  They found type II muscle atrophy, The neurologist letter to my doctor and the referring neurologist read "the observation of type II muscle fibre atrophy is very non-specific and is not always associated with an active muscle fibre disorder or presynaptic neuromuscular defect." This was before she actually looked at the slides.  Then she wrote a postscript "Type II atrophy is impressive and certainly real; I can't put my finger on the diagnosis and will keep thinking about it."  She had thought it was a somatiform disorder, whereas the first neurologist had thought it was a mitochondrial myopathy or calcium channelopathy.
    They then referred me to 2 other neurologists for their opinions and  I was sent to Montreal Neurological Institute and had repeat biopsy, this time in my left bicep with a incision to get a better and bigger sample.  They were looking for mitochondrial as well as other primary muscle diseases.  The only identifiable thing they found was a deficiency of myoadenylate deaminase, a muscle enzyme which can cause fatique, but certainly not the other neurological features I have - cogwheeling rigidity,clonus, left sided weakness, burning paresthesias, dizzy spells where i feel briefly paralyzed (can't talk or move parts of my body).  
     So at this point I am wondering if they should keep looking at the muscle biopsy slides or take a new biopsy.  The only thing it sounds like to me is a mitochondrial myopathy.  Are the ragged red fibres seen only in MERRF or also in MELAS and the other mito diseases?  Do you know?  I remember reading one journal article a few years ago that said the ragged red fibres don't always show up in the first few years of a mito. disease. What is in your vitamin cocktail? I am going on holidays for a week but will check this posting when i get back.  Thank you so much for your reply.  You are the only person i have corresponded with who has ever been tested for ragged red fibres. I appreciate your response.

[Jan Bailey]

Thelma, My first muscle biopsy was done in Atlanta in 1998 and was read at Emory clinic as being "mildly abnormal" with no evidence of mitochondrial disease.  It was done in the calf, which two neuro's at the University of MS have told me makes it highly unlikely that any "important information" would be attained from it.  I had a repeat biopsy done by my neurologist at the U. of MS....The report came back with my having Type II muscle atrophy.  It showed no evidence of mito disease.  But my neuro was convinced this is what was my problem, and sat down with the neuropathologist and looked at over 3000 cells until they found red ragged fiber.  My pulmonary testing last week reinforced that diagnosis, with my having some diaphragm involvement and the bicycling showed low metabolic energy in my cells.  Keep pushing for a diagnosis.  I started the cocktail last week and feel better already...maybe just the knowledge of what is wrong helps.  Good luck...JanB

[Thelma to JanB]

I was interested in your response to natalie that ragged red fibres showed up on your muscle biopsy.  I have had 2 muscle biopsies which looked for the ragged red fibres and they didn't find them (1995 and 1997). My symptoms started with exercise intolerance and a feeling of dizzines that I was going to fall down during pregnancy 6 years ago.  I still have the same feelings to this day as well as left sided weakness in my arms and legs, and a painful burning sensation on the surface of my skin.  The neurologists have told me they don't believe it is mitochondrial, although I still wonder because I don't have a definitive diagnosis yet.  I am taking prozac and amantadine, which is an anti-parkinson drug.  They both help the horrible feeling of weakness and fatigue and the burning sensation.  I have tried going off both of them and I can only last a day without 4 doses of amantadine.  ( and a week without prozac)  I hope you find some answers.  I was at a point two years ago when i just couldn't cope anymore, My neurologist had me try amantadine and also cylert(pemoline) which is used for narcolepy and also in MS to boost energy.  I hope you get some relief soon.

[Jan Bailey]

Maureen,  There is no cure of mito disease.  Treatment usually consists of a vitamin cocktail which can be tailored by the physcian to the patient, and sometimes of a regimented exercise program.  Sometimes people are helped by the cocktail and are stable or even improve, some people are not helped at all, and sometimes the body itself can arrests development of additional weakness for a time.  Once again, like in most diseases, each body will present with its own set of symptoms and will react to treatment in its own way....this is quite a rare disorder so please don't think you have it until proven otherwise...JanB

[Reenie]

Jan:  What is the treatment for the mitochondrial myopathy?  Thanks.

[ellenc]

Thank you for your caring and kind reply. Iguess I am obsessing about MS. I will look into the mito sites for more info. Thanks again.

[Jan Bailey]

Natalie, I did not mean to scare you or imply that you have MS.  I just had lots of peripheral sensory things...pins and needles, weakness in my left leg (also have bulging discs in lower back), paresthesias on right side of face, goosebumps in wierd patterns.  When all labs came back normal, then my neuro in Atlanta did MRIs (often at my request...I am a nurse and I guess and didn't want to wait out the symptoms).  I had the first biopsy done in atlanta and it was negative for mito about 3 years ago...The one done a month ago was positive.  You can find out about mito disease by looking under the mitochondrial association's web pages.  It is a complicated disorder...with many, many variations in presentation and system involvement.  Mine is primarily myopathy of muscles and exercise intolerance.  It can be scary I suppose, but no more than knowing something is wrong and not being able to find out what it is.  Good luck..Jan

[Jan Bailey]

To Natalie, I did not mean to scare you.  I was worked up for MS for many of the same reasons you were...pins and needles, tingling, weakness in my left leg, etc.  I had many of the same tests you had...some were "mildly suggestive" of peripheral or central nervous system disease, most were normal.  I was initially told I had Guilliane Barre, but this was never really substantiated on an EMG, and quite frankly, my symptoms and the length of the problem didn't fit that pattern.  The water drops being flicked on me "feelings" have occured about 6 months now...very irregularly.  The nervous system is so complicated and can be affected by so many body systems.  Once again, I didn't mean to scare you.  You can find information on mitochondrial disease in the Mitochondrial Foundation webpages.  Good luck...JanB

[to Jan]

Jan:
I'm interested in talking to you more since my doctor has mentioned a possible mitochondrial disorder.  I thought I was home safe when I was unable to find anyone diagnosed with mito who began with sensory symptoms.  I too began with sensory symptoms but muscle weakness is my most prominent symptom now. Mito is very scary to me.  Post me privately if you'd like at ***@****.

[ellenc]

I'm sorry to hear of your diagnosis. I really have no idea WHAT mitochondrial myopathy is. Did your neuro give you any idea? What is the prognosis? In what way are you weak? Thanks for ANY insight you can give me.

By the way, why did they keep testing for MS? Is this s sign of MS?

Natalie

[Jan Bailey]

Natalie,I too have had that sensation (water dropping on my skin) and have been worked up nearly yearly for MS over a period of 4 years, always negative.  This time, however, I have an elevated lactic acid and my muscle biopsy was positive for red ragged fiber, and I have been diagnosed as having mitochondrial myopathy...the type not determined.  Since the biopsy was done by frozen section, I will not learn the type and am trying to find out HOW IMPORTANT it is to have a fresh biopsy or to know exactly which mito disease I have.  Keep pushing for a diagnosis IF the symptoms are bothersome.  I lived with the wierd sensory things for 5 years, and truly was able to push it out of my mind most of the time. It was only when weakness developed that I finally had to dig deeper to find the answers.  Good luck.

[CCF Neuro[P] MD, RPS]

Dear Natalie:

Sorry to hear about your symptoms.  The good news, I guess, is that all your tests are normal, but the counterpart is that you are having the symptoms.  Sensory problems, especially pain and temperature sensations might be caused by small fiber neuropathies which would not be picked on EMG, either needle or conduction velocity tests.  The problem is that all of your lab tests have been normal and thus the causes of small fiber neuropathies are pretty much ruled out.  I am at a loss on what to tell you.  I am also not sure what the "cold drops" of water being dropped on your body could be.  Since the distribution of the parasthesias is not a neurological one, I would not bother your neurologist at present.  See if the problem worsens or develops a pattern of neurological focus, such as limited to the outside thigh, or in the ring and pinky finger, or everywhere from the umbilicus downard, etc.  Otherwise, your neurologist has no way of placing the symptoms with a part of the nervous system except "too generalized" to be neurological.

Sorry, I am not much help.

Sincerely,

CCF Neuro MD