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skin tissues changing, by feeling and by looking at skin tissue changes, texture
I posted about january sometime. I had the feeling of fluid or secretions under skin tissues. Where I feel this running of fluid or secretions has become swollen. My face and neck, undereyes and the rest of my body but the most pronounced swelling is in the face and neck area. My skin tissues on my hands fce feet go from dry to feeling wet, not sweaty but a wet texture. 24/7 post nasal drainage thick white. Eyes very watery as well. Has anyone ever had this, could this be from my autonomic nervous system. I am scheduled to go back up to Mayo in March- I was just up there in October, now they tell me there are 2 more tests they could have done. They are scheduling 4 tests though. EMG - whick I already had two of them in the past 4 yrs. Sweat test which i had 2 yrs. ago , Quantative sensory test , somatosensory evoked potential test as well. PLEASE LOOK BACK ON WATER SENATIONS RUNNING UNDER SKIN TISSUES AS I POSTED BEFORE. I feel this fluid or whatever running constantly, undereyes swollen, between eyebrows, forehead, check and neck area. My skin tissues on the rest of my body are not as pronounced. Right foot feels wet, then goes dry and cracked. Could this be autonomic disorder, has anyone ever had this feeling of fluid running under skin tissues and causing swelling as well. Please I am so desperate for answers. 4yrs now.
Was relieved to hear someone else has had your fluid dripping under the skin experience - although its not much fun... Was wondering if you ever got to the bottom of it - ie its name and treatment? I hope so - its driving me crazy. Help!
Hi Laaz,
Glad to hear you are going to be part of a research protocol at your local hospital. Does it have to do specifically with the swelling/fluid under your skin? I hope you get some answers at Mayo. Some of the articles I have read when doing searches on dysautonmia have been written by some of the docs up at Mayo in Minnesota, so I'm sure they are quite expert in their field. Let me know what you find out after you are back and get the test results--if you get a diagnosis or if they think the fluid feeling under your skin is caused by autonomic dysfunction, etc. I have to say, I've never heard of anything like that before.
I'm pretty much the same, although in the past couple months my urge incontinence has gotten a little more frequent (it was very rare before, mostly just urge and rare actual incontinence). I also am having a little more trouble swallowing-food and vitamins getting stuck in my throat quite a bit-and I have had more stomach and chest pain from the gastroparesis, but generally I am about the same. As I told you before, I also will be going to Mayo end of March (Florida one); am getting an LP and have a follow-up with the MS specialist I saw in Dec. and a consult with the auton. dysfunction specialist as well. I hope I get some answers. If the LP is normal then I will feel pretty sure it's not MS and that I have some kind of peripheral neuropathy with autonomic dysfunction instead. I'm just glad I am finally being taken seriously after all these years. I am just too tired to put up with what I had put up with from the doctors for so long. I was only 27 when my symptoms started and I am 44 now. I assume you must have a lot of fatigue as well.
Well, I hope the tests you are having done there are enlightening and the doctors can finally piece your symptoms together. I hope you have the opportunity to tell them everything/all your symptoms so they can figure it out. I've never had evoked potentials done, but my EMG was normal in the past and all my autonomic dysfunction testing at Mayo (surprisingly) was normal except the QSART/sudomotor, so I won't be repeating any of that. I will let you know what I find out as well if you are still checking in on this board. Take care.
Glad to hear you are going to be part of a research protocol at your local hospital. Does it have to do specifically with the swelling/fluid under your skin? I hope you get some answers at Mayo. Some of the articles I have read when doing searches on dysautonmia have been written by some of the docs up at Mayo in Minnesota, so I'm sure they are quite expert in their field. Let me know what you find out after you are back and get the test results--if you get a diagnosis or if they think the fluid feeling under your skin is caused by autonomic dysfunction, etc. I have to say, I've never heard of anything like that before.
I'm pretty much the same, although in the past couple months my urge incontinence has gotten a little more frequent (it was very rare before, mostly just urge and rare actual incontinence). I also am having a little more trouble swallowing-food and vitamins getting stuck in my throat quite a bit-and I have had more stomach and chest pain from the gastroparesis, but generally I am about the same. As I told you before, I also will be going to Mayo end of March (Florida one); am getting an LP and have a follow-up with the MS specialist I saw in Dec. and a consult with the auton. dysfunction specialist as well. I hope I get some answers. If the LP is normal then I will feel pretty sure it's not MS and that I have some kind of peripheral neuropathy with autonomic dysfunction instead. I'm just glad I am finally being taken seriously after all these years. I am just too tired to put up with what I had put up with from the doctors for so long. I was only 27 when my symptoms started and I am 44 now. I assume you must have a lot of fatigue as well.
Well, I hope the tests you are having done there are enlightening and the doctors can finally piece your symptoms together. I hope you have the opportunity to tell them everything/all your symptoms so they can figure it out. I've never had evoked potentials done, but my EMG was normal in the past and all my autonomic dysfunction testing at Mayo (surprisingly) was normal except the QSART/sudomotor, so I won't be repeating any of that. I will let you know what I find out as well if you are still checking in on this board. Take care.
hi annie- hope things are going better for you. any improvements with any of your problems? In your last post you asked me if the plasmaphoresis & iv igg infusions helped- they did not. I spoke with one of the ENT doctors at home here about 24/7 post nasal drainage and that sinus rinses and every kind of nasal spray did not work. They said autonomic dysfunction of the sinus and nasal mucosa , this can cause swelling of the facial tissue all the way down to the neck . or edema which ever. I would keep telling the doctors that my skin feels different but they would not believe me. In a few months the hospital home here has gotten a government fund to start research about this and I am going to be in the research program. I wonder if the edema from this could also had a reaction that affected my entire body skin tissues because all of the tissues feel the same, slight edema. I am going to Mayo this month march 26. doctors up there are going to be doing numerous testing in the neurology department. The autonomic specialist is ordering these tests. EMG, my third one in 4 yrs. A sweat test, 2 in 4yrs. a somatosensory evoked potential, and sensory testing. When I had elevated wbc in spinal fluid 1and a half years after being sick, Mayo is the one that did't do or make anything of it. After my first sweat test i only had swelling under eyes, but when i came out of sweat test, all the swelling was gone and in a couple minutes, it filled right back up again, under my eyes but now the swelling has spread. I also feel this running under skin tissues, also buzzing, vibrating of right foot. I really don't think that there is anything they could do for this. My eyes are always tearing but they say i have dry eye, saliva is thick, 24/7 post nasal drainage is thick as well. I had an ANA test, doctors said not autoimmune. I'm just about ready to give up. Can't stand any of this, from my scalp to the soles of my feet . Do you ever feel like this is not living but just existing?
Laaz,
If these symptoms came on suddenly in the Dom. Republic with the diarrhea and the feeling of a sudden jabbing pain in your head and then the postnasal secretions, do you think that possibly you were bitten by something down there or contracted some kind of bacterium (as opposed to a virus)? Did you get tested for Lyme at a good lab where they test for all the different Lyme infections? Apparently the ELISA test is not sufficient as it doesn't test for all different forms of Lyme. Lyme can cause a lot of different symptoms, including central nervous system and autonomic neuropathy. It can also cause lesions in the brain. You said you had 6. What do the doctors think the nature of those lesions are if not MS? You could have got bitten down there by something or you could have been bitten here in the States and then the symptoms presented while you were down there. Maybe a referral to an infectious disease specialist would bring something to light. Have any doctors ever even suggested it could be Lyme? I'm curious about that.
Did the IVIG treatments and plasmapheresis help at all? What was that experience like?
And wouldn't the WBCs in your CSF a year after your symptoms started be indicative of some kind of ongoing infection?
No, the only meds I am on (for the neuro-related stuff) are domperidone, Zelnorm and AciPhex for the gastroparesis. As I said, the doctors/neurologists didn't believe there was anything actually wrong with me until a few months ago when I got dxd with the GP, so I have gotten no treatment for anything. It sounds like at least they are treating you in spite of not having a dx. If you received IVIG and plasmapheresis they have to be taking you seriously now--and that is a good thing.
As far as fasciculations, I have occasional twitching of my upper and lower eyelids, but that is it.
And as far as work, I only work part-time on the computer from home, but it's not enough to support myself and now I don't have money even for the things I need. I am a very minimalist/non-materialistic person, so I can go without a lot, but it's expensive living in Florida where I live and some things just can't be gotten around (house insurance, property taxes are the big ones). Luckily, I have good health insurance. I made sure I got a PPO with an Rx plan when I was still working full-time a few years ago because I knew I had something seriously wrong with me even though the doctors all dismissed me. I knew I had a chronic condition (that wasn't hard to figure out after years of ongoing symptoms that were accruing) and that I would need it some day, and that they eventually were going to figure out what was wrong with me. I am now continuing it under HIPAA (converted from COBRA) and it is $6000 a year before they pay a dime). Outrageous, but better than what I would be paying for my meds and medical bills (I couldn't!) if I had no insurance at all. I have an incredible amount of fatigue from whatever is wrong with me. I am tired from the time I wake up in the a.m. until the time I go to bed, and it generally gets worse as the day goes on. My stomach/chest hurt me every day, although the meds help some by moving the food through quicker. I have also started to have a little more problem with my bladder (urge incontinence) and swallowing lately.
It sounds like we have very different symptoms although you have some autonomic neuropathy too. Maybe they will figure something out on your return to Mayo next month. What kind of neuro will you be seeing up there, one that specializes in autonomic dysfunction, or what? I really would pursue the Lyme or some other infectious agent possibility. To be perfectly healthy and then get so sick suddenly with such bizarre symptoms, and to be in a 3rd World country at the time, have an elevated WBC count in your CSF, brain lesions as well--it sounds possibly like something infectious. I have to say I have never heard anyone describe the feeling of fluid secretions running all over their body, although I have heard people on this board say they have felt like water was running down their leg. You're obviously going through a lot, taking care of your father in addition to being sick yourself. If you want to keep in touch I will. I usually check this board every morning. Well, it's getting late and I need to start work. Talk to you later.
If these symptoms came on suddenly in the Dom. Republic with the diarrhea and the feeling of a sudden jabbing pain in your head and then the postnasal secretions, do you think that possibly you were bitten by something down there or contracted some kind of bacterium (as opposed to a virus)? Did you get tested for Lyme at a good lab where they test for all the different Lyme infections? Apparently the ELISA test is not sufficient as it doesn't test for all different forms of Lyme. Lyme can cause a lot of different symptoms, including central nervous system and autonomic neuropathy. It can also cause lesions in the brain. You said you had 6. What do the doctors think the nature of those lesions are if not MS? You could have got bitten down there by something or you could have been bitten here in the States and then the symptoms presented while you were down there. Maybe a referral to an infectious disease specialist would bring something to light. Have any doctors ever even suggested it could be Lyme? I'm curious about that.
Did the IVIG treatments and plasmapheresis help at all? What was that experience like?
And wouldn't the WBCs in your CSF a year after your symptoms started be indicative of some kind of ongoing infection?
No, the only meds I am on (for the neuro-related stuff) are domperidone, Zelnorm and AciPhex for the gastroparesis. As I said, the doctors/neurologists didn't believe there was anything actually wrong with me until a few months ago when I got dxd with the GP, so I have gotten no treatment for anything. It sounds like at least they are treating you in spite of not having a dx. If you received IVIG and plasmapheresis they have to be taking you seriously now--and that is a good thing.
As far as fasciculations, I have occasional twitching of my upper and lower eyelids, but that is it.
And as far as work, I only work part-time on the computer from home, but it's not enough to support myself and now I don't have money even for the things I need. I am a very minimalist/non-materialistic person, so I can go without a lot, but it's expensive living in Florida where I live and some things just can't be gotten around (house insurance, property taxes are the big ones). Luckily, I have good health insurance. I made sure I got a PPO with an Rx plan when I was still working full-time a few years ago because I knew I had something seriously wrong with me even though the doctors all dismissed me. I knew I had a chronic condition (that wasn't hard to figure out after years of ongoing symptoms that were accruing) and that I would need it some day, and that they eventually were going to figure out what was wrong with me. I am now continuing it under HIPAA (converted from COBRA) and it is $6000 a year before they pay a dime). Outrageous, but better than what I would be paying for my meds and medical bills (I couldn't!) if I had no insurance at all. I have an incredible amount of fatigue from whatever is wrong with me. I am tired from the time I wake up in the a.m. until the time I go to bed, and it generally gets worse as the day goes on. My stomach/chest hurt me every day, although the meds help some by moving the food through quicker. I have also started to have a little more problem with my bladder (urge incontinence) and swallowing lately.
It sounds like we have very different symptoms although you have some autonomic neuropathy too. Maybe they will figure something out on your return to Mayo next month. What kind of neuro will you be seeing up there, one that specializes in autonomic dysfunction, or what? I really would pursue the Lyme or some other infectious agent possibility. To be perfectly healthy and then get so sick suddenly with such bizarre symptoms, and to be in a 3rd World country at the time, have an elevated WBC count in your CSF, brain lesions as well--it sounds possibly like something infectious. I have to say I have never heard anyone describe the feeling of fluid secretions running all over their body, although I have heard people on this board say they have felt like water was running down their leg. You're obviously going through a lot, taking care of your father in addition to being sick yourself. If you want to keep in touch I will. I usually check this board every morning. Well, it's getting late and I need to start work. Talk to you later.
Hi Annie - MY PROBLEMS STARTED 4 YRS. AGO ON FEBURARY 14 I will never forget that day. We were in the Dominican Republic on vacation - a third world country- Had explosive dirrhea 3 times, ached, chills, etc. The next night I had this pronounced jab like feeling way up high behind my nose or up higher in my head, then all these watery secretions started running down my throat for about 15 seconds & then stopped a suddenly as it started. Secretions got real thick up behind my nose, then that is when it all started, I had these pricking, tingling feeling all over my whole body-head to toe. After awhile they stopped, then came the feeling of secretions or water feeling running down over my face, scalp, ears, neck after about one and a half yrs. it progressed over the rest of my body and it has not stopped since. 24/7 post nasal drainage - no nasal sprays work, saline rinses, nothing works. Doctors had me on mega doses of neurontin, I have had plasmapheresis, and IV igg infusions, I am getting my last one this Wednesday. My right foot also constantly has this vibration, buzzing feeling all the time. I know just what you mean about doctors thinking it is all in your head. My neurologist at home believes me but doesn't know what to do anymore to help me. My hand and feet are constantly cold, my vision is also blurry. I have been tested for MS they ruled that out even though I have 6 brain lesions. I had two spinal taps done, all it showed 1 yr. after illness was elevated wbc in spinal fluid, wbc was one number away from treating it. I often wonder why after a yr. being sick that my wbc should still be elevated. The question that you asked about the swelling and skin tissue changes and swelling, yes, my friends and family notice it and so did a massage therpist, a woman that gives facials, and my hairdresser. My feet go from looking as if I soaked in the bath tub for about two days, to being dry and cracked, I use to have HUGE calouses on my big toes and they completely went away without treatment to remove them. My finger palms and soles of my feet get sweaty and then dry- really weird. I had a few experiences with bowel and bladder problems, It is so frustrating that at the time I was a healthy 45 yr. old to this, I am 49 now going to be 50. Right now I don't take any medications- for what they don't do anything. One doctor said viral syndrome, one doctor said parasympathetic overdrive of my secreting glands, another basically thought I was nuts. That it was all in my head, I laughed to myself ya, that is right where it all started. Does everyone you know always say, don't give up, never give up hope? I hear that all the time and I am so sisck of hearing it because they don't have to live it. Do you take any medications that help? Do you get fasciculations? I do, all over my body and some I can see, I can see the twitches under the skin. The most rotten part of this all is the constant feeling of secretions or fluid whatever, running over my face 24/7 and the 24/7 post nasal drainage. Oh ya, one doctor I spoke with on the phone from Mayo thinks it might be a sensory disturbance but how do skin tissues change from a sensory disturbance? How do you manage to handle all your problems Annie, it must be so hard, I know it is for me I hate everyday that goes by. Are you able to work? I quit my job 2yrs. ago, my father had a stroke and he now lives with me and I take care of him. Sorry about rambling on so much, I just want an answer from a doctor- I wish they would diagnose me with something instead of guessing and having all these doctors tell me something different. I hope things will change or improve for you, I really do. Isn't it funny that it tok all those yrs. for you to have a doctor believe that there was something wrong with you. Like i tell the doctors, a person knows their body better than anyone else, they should know if their body has changed in any way shape or form. You know your body better than any doctor. Write soon
Hi laaz,
I went to Mayo in Jacksonville in Dec. and am returning in March. My symptoms started 17 years ago (44 now) with a left-sided Horner's syndrome (lost sweating function on left side of my body, had drooping eyelid and constricted pupil-all on left side). I saw dumb neuro who only did chest x-ray (for chest tumor) and never made follow-up appnt for me. Felt fine then. Actually got sick in '94 after RTI/cold with chest pain, weakness, slowed/shallow breathing, faintness (still don't know how that fits in, but believe it is related). In '98 got blurred vision in right eye, right mouth droop; in '99 after another bad infection got mild left leg and arm weakness, trouble swallowing, weird rapid vibration in left ear when yawning, slurred speech. Later got mild tingling/blood cut off/heaviness feeling in left arm and leg. However, my MRIs (for MS) and EMG (for myasthenia gravis) were all normal. Since '94 I have been trying to convince doctors my symptoms were not psychsomatic and that I had some kind of neurological problem. Now they finally believe me, because:
6 months ago I was dxd with severe gastroparesis (slowed stomach emptying due to autonomic neurpathy/vagus nerve damage. I got sent to Mayo in Dec. to see MS specialist. She told me that she thought I had something called autoimmune autonomic neuropathy (a primary autonomic failure that is immune-mediated) and did a comprehensive autonomic work-up on me. All the blood work done did not point to a cause-it was all negative (as you probably know, many things can cause autonomic neuropathy-diabetes, MG, scleroderma, Sjogren's, cancer, celiac disease, etc.). My Tilt table test, test for urinary retention, and SNIF test (for diaphragm paralysis), however, were all negative but my QSART showed that I had hypohidrosis of the left leg--apparently left over from the long-ago Horner's syndrome where I lost the sweating function on left side of my body. I also have a very slow pulse (usually about 56).
So, the only autnom. neuropathy that I know for sure (by testing) I have is severe gastroparesis and hypohidrosis of left leg. But I also have sexual dysfunction and bladder issues (not retention, mild urge incontence made worse by heat) that are also autonomic in nature, I believe. So, I don't have a definite dx either, but am returning to Mayo in March to get a lumbar puncture to rule in/out MS and to see not only the MS specialist I saw last time but the autonomic dysfunction specialist there. I don't want to mention their names (just prefer not to), but you can easily look them up (Jacksonville has one primary MS specialist and one primary autonomic dysfunction specialist). Besides, you are going to Rochester so they wouldn't be the docs you saw, anyway.
I really don't know about the weird wet feeling you have under your skin. Did you say you actually get swollen in those areas? I've never heard of that before and hope they figure it out at Mayo. What other symptoms (autonomic or otherwise) do you have? Any stomach, bladder problems? Is the hypohidrosis only confined to your foot? I would be interested to hear what your other symptoms are (if you have any). Not many people on this board have autnonic neuropathy issues.
I went to Mayo in Jacksonville in Dec. and am returning in March. My symptoms started 17 years ago (44 now) with a left-sided Horner's syndrome (lost sweating function on left side of my body, had drooping eyelid and constricted pupil-all on left side). I saw dumb neuro who only did chest x-ray (for chest tumor) and never made follow-up appnt for me. Felt fine then. Actually got sick in '94 after RTI/cold with chest pain, weakness, slowed/shallow breathing, faintness (still don't know how that fits in, but believe it is related). In '98 got blurred vision in right eye, right mouth droop; in '99 after another bad infection got mild left leg and arm weakness, trouble swallowing, weird rapid vibration in left ear when yawning, slurred speech. Later got mild tingling/blood cut off/heaviness feeling in left arm and leg. However, my MRIs (for MS) and EMG (for myasthenia gravis) were all normal. Since '94 I have been trying to convince doctors my symptoms were not psychsomatic and that I had some kind of neurological problem. Now they finally believe me, because:
6 months ago I was dxd with severe gastroparesis (slowed stomach emptying due to autonomic neurpathy/vagus nerve damage. I got sent to Mayo in Dec. to see MS specialist. She told me that she thought I had something called autoimmune autonomic neuropathy (a primary autonomic failure that is immune-mediated) and did a comprehensive autonomic work-up on me. All the blood work done did not point to a cause-it was all negative (as you probably know, many things can cause autonomic neuropathy-diabetes, MG, scleroderma, Sjogren's, cancer, celiac disease, etc.). My Tilt table test, test for urinary retention, and SNIF test (for diaphragm paralysis), however, were all negative but my QSART showed that I had hypohidrosis of the left leg--apparently left over from the long-ago Horner's syndrome where I lost the sweating function on left side of my body. I also have a very slow pulse (usually about 56).
So, the only autnom. neuropathy that I know for sure (by testing) I have is severe gastroparesis and hypohidrosis of left leg. But I also have sexual dysfunction and bladder issues (not retention, mild urge incontence made worse by heat) that are also autonomic in nature, I believe. So, I don't have a definite dx either, but am returning to Mayo in March to get a lumbar puncture to rule in/out MS and to see not only the MS specialist I saw last time but the autonomic dysfunction specialist there. I don't want to mention their names (just prefer not to), but you can easily look them up (Jacksonville has one primary MS specialist and one primary autonomic dysfunction specialist). Besides, you are going to Rochester so they wouldn't be the docs you saw, anyway.
I really don't know about the weird wet feeling you have under your skin. Did you say you actually get swollen in those areas? I've never heard of that before and hope they figure it out at Mayo. What other symptoms (autonomic or otherwise) do you have? Any stomach, bladder problems? Is the hypohidrosis only confined to your foot? I would be interested to hear what your other symptoms are (if you have any). Not many people on this board have autnonic neuropathy issues.
one and a half years after getting sick I had sweat test at Mayo - showed small fiber neuropathy on top of left feet only. My symptoms started on my face first. I also had emg at Mayo. the same day I had the sweat test. emg came back fine. This past october I was at mayo they did the quantative sudormotor axon reflex test and that was ok too. In March they are going to do somatosensory evoked potential, sensory test too. Doctor said maybe if needed a biopsy. If I may ask what exactly are your symptoms, how did they start, how long have you had this and what tests have youo had done. Are you on any medications that help or had any surguries. Sorry don't mean to sound so personal. What doctors or doctor did you see at Mayo. I went to Mayo in Rochester, MI. Which Mayo did you go to. Hope to have a response from you soon.
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