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Neurology (Expert Forum)
multi symptoms
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
multi symptoms
by debra, Apr 06, 2000 12:00AM
Since Dec.'98 I have felt ill.
It started, I think with a mild cold. I noitced my right tonsil was very large. During that week I began to get a tingling in my pinkie fingers. A few days later, my wrists were hurting, a week after that, my arms and legs hurt everywhere. I noticed at this time that my palms were very red, almost purplish and the vein on my palms near the thumb were raised more than usual, hands felt swollen. The pain was excruciating. I took a hot bath to try to sooth things and I had to get out because I could bearly breathe.
I went to the doctor who put me on zoloft and diazepam. This took away a lot of the pain. My blood work showed a 6000 count on the auto immune testing(I forget what that test is called, I'm not sure if that is the sed rate). I was then told that I had an autoimmune process and to see a rheumatologist. When I went there, I had further bloodwork that showed enlarged and odd shaped white cells. The doctor said it wasn't worrisome but that it looked like I was fighting an infection of some kind.
He also said he was not concerned about the sed rate because people's numbers can be high whenever they encounter an infection but we don't see that unless they come in. I saw him two other times. He tested for kidney damage if it was lupus but he said he wasn't ready to call it that. I don't have the face rash, but there are times that I will get flush looking.
Six months into the illness I got a horrendous rash, very large white, kind of hard bumps that were itchy and the next day they were red and extremely itchy, they formed blisters that had blood in them. They seemed oozy but scabbed over and would heal from the outside circle inward so that the center was the last to heal. The rash lasted for about 4 months.
During all this, my night time was a horror also. Initially, when I would fall asleep (the first two nights) my arms would thrash, my gut would jolt and when my gut jolted it felt like a nerve sensation would travel straight down to my groin and make me feel as though my bladder would give but then it would stop.
My arms flung from one side to the other, my feet would and at times still do lift and shake involuntarily. This happens as I doze off and can run into my sleeping. I also experienced the first two nights this feeling of a tight line from right down my chest and as I would start to doze I would wake because I had to catch a breath. I never snored before and now my husband says it's very bad and I can at times find myself catching a breath in my sleep and at the same time, I will get a jolt somewhere.
I was dealing with this because my doctor(family) told me with that sed rate, he disagreed with the rheumatologist who said it was probably a virus,that I definitely have an auto immune process and we just have to sit back and wait to see what it is.
I decided to come off the zoloft because I am still twitching or jolting at night and I go to doctors who can't see all my symptoms because the zoloft is hiding some symptoms. It didn't do anything for my twitch/jolts.
Being off the zoloft I feel depressed some days, fatigue all the time. I forgot to mention while I sleep my hands will feel heavy they swell, and get very flushed, and the pinkie digits on both hands feel like they are stiff or don't want to lift but do and initally they would trigger up. The odd thing about that is that when I get up it goes away immediately and the flushness just stays in my finger tips.
I'm now noticing my feet get like a throbbing feeling and sometimes the feeling you would get if your foot fell asleep but not entirely because there's no prickly feeling but a feeling of perhaps blood moving around. I know this sounds odd and hard to understand but the feeling is odd.
This week I started walking with the good weather and noticed that my pinkie toes and second toes in from go numb while I walk and when I was done I noticed the numbness was subsiding but that they were hurting. I looked at them and my whole foot was very flush and now I've been getting pain in the palms of my feet also.
My face can get these twitches also, my eyes will be closed while sleeping and they will blink inward so my eyes don't open but I felt the blink.
I've had other odd things, such as my right eyelid would contract so that the lashes would pull towards the center of my lid. This lasted about a month, I've had my forehead skin area feel like the same contracting feeling, again for about a month.
I've had a pulling slight pulling feeling at corner of my eye and a feeling of pressure in the crease of each nostril of my nose. Initially even my tongue moved from side to side when sleeping (only happened about 2-3 times during this 1 and half year period)
I know this is lengthy but I hope you can bear with me.
The pinkies on my hands get numb at times and I feel a little crampiness along the muscle where my pinkies are. Also, my hands look more flush than others around me. The pain in my foot is in the same area, near the pinkie toes.
I just went to the neurologist just recently and he told me that he didn't see anything nuerological and that I should be happy about that. I don't know what a neurologist should do in office but is it possible for him to tell there's no problem with just having me do walk a line, check my eye movements, bending and pulling and pushing down against his force and that metal vibration instrument.
I have seen two family practitioners, a rheumatologist, neurologist and I don't know what to do. The neurologist is testing for lyme, b12 sed rate and red/white blood count.
I would really appreciate your time taken to read what I have written and to see what your thoughts are on this.
This whole time I have felt like the origin of my problems was venous because the pain I told you about in the beginning of my letter came from my veins. The family practitioner doesn't believe that but I tested myself by closing my eyes and touching the source of my pain and everytime I opened my eyes, I would be touching a vein. Does this sound crazy to you?
There are so many symptoms I am experiencing I hope I didn't overwhelm you. The neurologist said that he cannot correlate these symptoms to any one thing.
I am very distressed never finding answers and my only other thoughts to do are to go somewhere and get a comprehensive testing done. Can you tell me what that would entail, what your thoughts are on my symptoms and if all this sounds like ALS.
Thank you for reading and taking time for another desperate patient.
It started, I think with a mild cold. I noitced my right tonsil was very large. During that week I began to get a tingling in my pinkie fingers. A few days later, my wrists were hurting, a week after that, my arms and legs hurt everywhere. I noticed at this time that my palms were very red, almost purplish and the vein on my palms near the thumb were raised more than usual, hands felt swollen. The pain was excruciating. I took a hot bath to try to sooth things and I had to get out because I could bearly breathe.
I went to the doctor who put me on zoloft and diazepam. This took away a lot of the pain. My blood work showed a 6000 count on the auto immune testing(I forget what that test is called, I'm not sure if that is the sed rate). I was then told that I had an autoimmune process and to see a rheumatologist. When I went there, I had further bloodwork that showed enlarged and odd shaped white cells. The doctor said it wasn't worrisome but that it looked like I was fighting an infection of some kind.
He also said he was not concerned about the sed rate because people's numbers can be high whenever they encounter an infection but we don't see that unless they come in. I saw him two other times. He tested for kidney damage if it was lupus but he said he wasn't ready to call it that. I don't have the face rash, but there are times that I will get flush looking.
Six months into the illness I got a horrendous rash, very large white, kind of hard bumps that were itchy and the next day they were red and extremely itchy, they formed blisters that had blood in them. They seemed oozy but scabbed over and would heal from the outside circle inward so that the center was the last to heal. The rash lasted for about 4 months.
During all this, my night time was a horror also. Initially, when I would fall asleep (the first two nights) my arms would thrash, my gut would jolt and when my gut jolted it felt like a nerve sensation would travel straight down to my groin and make me feel as though my bladder would give but then it would stop.
My arms flung from one side to the other, my feet would and at times still do lift and shake involuntarily. This happens as I doze off and can run into my sleeping. I also experienced the first two nights this feeling of a tight line from right down my chest and as I would start to doze I would wake because I had to catch a breath. I never snored before and now my husband says it's very bad and I can at times find myself catching a breath in my sleep and at the same time, I will get a jolt somewhere.
I was dealing with this because my doctor(family) told me with that sed rate, he disagreed with the rheumatologist who said it was probably a virus,that I definitely have an auto immune process and we just have to sit back and wait to see what it is.
I decided to come off the zoloft because I am still twitching or jolting at night and I go to doctors who can't see all my symptoms because the zoloft is hiding some symptoms. It didn't do anything for my twitch/jolts.
Being off the zoloft I feel depressed some days, fatigue all the time. I forgot to mention while I sleep my hands will feel heavy they swell, and get very flushed, and the pinkie digits on both hands feel like they are stiff or don't want to lift but do and initally they would trigger up. The odd thing about that is that when I get up it goes away immediately and the flushness just stays in my finger tips.
I'm now noticing my feet get like a throbbing feeling and sometimes the feeling you would get if your foot fell asleep but not entirely because there's no prickly feeling but a feeling of perhaps blood moving around. I know this sounds odd and hard to understand but the feeling is odd.
This week I started walking with the good weather and noticed that my pinkie toes and second toes in from go numb while I walk and when I was done I noticed the numbness was subsiding but that they were hurting. I looked at them and my whole foot was very flush and now I've been getting pain in the palms of my feet also.
My face can get these twitches also, my eyes will be closed while sleeping and they will blink inward so my eyes don't open but I felt the blink.
I've had other odd things, such as my right eyelid would contract so that the lashes would pull towards the center of my lid. This lasted about a month, I've had my forehead skin area feel like the same contracting feeling, again for about a month.
I've had a pulling slight pulling feeling at corner of my eye and a feeling of pressure in the crease of each nostril of my nose. Initially even my tongue moved from side to side when sleeping (only happened about 2-3 times during this 1 and half year period)
I know this is lengthy but I hope you can bear with me.
The pinkies on my hands get numb at times and I feel a little crampiness along the muscle where my pinkies are. Also, my hands look more flush than others around me. The pain in my foot is in the same area, near the pinkie toes.
I just went to the neurologist just recently and he told me that he didn't see anything nuerological and that I should be happy about that. I don't know what a neurologist should do in office but is it possible for him to tell there's no problem with just having me do walk a line, check my eye movements, bending and pulling and pushing down against his force and that metal vibration instrument.
I have seen two family practitioners, a rheumatologist, neurologist and I don't know what to do. The neurologist is testing for lyme, b12 sed rate and red/white blood count.
I would really appreciate your time taken to read what I have written and to see what your thoughts are on this.
This whole time I have felt like the origin of my problems was venous because the pain I told you about in the beginning of my letter came from my veins. The family practitioner doesn't believe that but I tested myself by closing my eyes and touching the source of my pain and everytime I opened my eyes, I would be touching a vein. Does this sound crazy to you?
There are so many symptoms I am experiencing I hope I didn't overwhelm you. The neurologist said that he cannot correlate these symptoms to any one thing.
I am very distressed never finding answers and my only other thoughts to do are to go somewhere and get a comprehensive testing done. Can you tell me what that would entail, what your thoughts are on my symptoms and if all this sounds like ALS.
Thank you for reading and taking time for another desperate patient.
Doctor's Answer
by CCF Neuro[P] MD, RPS, Apr 06, 2000 12:00AM
Dear Debra:
Sorry to hear about your symptoms. To rest your mind about ALS, this is something you don't have. The symptoms of ALS are pure motor and you do not describe any motor symptoms. The feeling that you have to move your legs while going to sleep, sounds a bit like restless leg syndrome, I would tell your neurologist about this. The other symptoms I really can't make a comment on. It sounds like you might need to gather all your information and lab results and seek a second opinion. Someone who could freshly look at you and all the data and then see what he/she thinks.
Sincerely,
CCF Neuro MD
Sorry to hear about your symptoms. To rest your mind about ALS, this is something you don't have. The symptoms of ALS are pure motor and you do not describe any motor symptoms. The feeling that you have to move your legs while going to sleep, sounds a bit like restless leg syndrome, I would tell your neurologist about this. The other symptoms I really can't make a comment on. It sounds like you might need to gather all your information and lab results and seek a second opinion. Someone who could freshly look at you and all the data and then see what he/she thinks.
Sincerely,
CCF Neuro MD
I don't know were to start.I've been to a neurologist,and orthopeditic doctor.The neurologist said that I Have Distal Symmetrical Polyneuropathy Syndrome,Plus Minimal Incitient Distal Syndrome.He at this time perscribed neurontrin starting out at hundred Mgs 3 times per day did this for approximately two weeks went up in med.until I was Taking 300mgs at morning,three hundred at noon and two hundered at suppertime,Went back and he cut me off all meds.My Left ankle was swollen so bad that I went to the orthor doc. and he put me on indomicine,for the swelling and give me a walking cast the swelling has gone,almost.this AM at 4:50 I had what I call hot flashes,again,I know I didn't tell you this earlier,but this has been going on for about two years,My hands and feet right now feel as though they are going to catch on fire.I had surgery on my left shoulder on the 25th of Jan. for a torn rotary cuff and that shoulder feels as if there is a claw on it after PT.All this is driving me nuts.My hands you touch and they turn all white.The bottom of my feet hurt to walk all the time.Hopeing that you can help
Wes
I am not going to be much help. The real treatment is to find the etiology of your neuropathies and treat that disease. What is the etiology of your polyneuropathies? A medication that can help is carbamazepine, talk to your physician.
CCF Neuro MD
I had with a doner bone fushion.
I still have alot of pain in between my shoulder blades where the new bone and hardware is and it has been 4 months since my surgury and it seems to be getting worse.
I also have a sick feeling all the time and it is really hard to put a finger on it my head gets light and I get the feeling like I am going to vomit
It really feels like the flu aches and pains swollen glands
pains under my right side of rib cage and in my back (kidney area) Tons of hives. I never had any of these symptems before my surgury and they are getting worse daily is it possible my body is rejecting the bone?
My x-rays looked good the last time I was in (2 months ago)
and it was just starting to fuse I told my Dr. of the pain which was minor than and has increased since, and he said to try physical therapy I have a pretty good range of motion except for chin to chest and a 2 & 3 year old so I dont believe physical therapy will be doing me any good. I honestly get plenty of exercise when I feel up to it which is less and less because I feel tired all the time.
I realy would value your opinion. I will list the problems for ease,
I am under a neurologist, and have had bloods, brain scan and lumbar puncture performed 1 year ago.
* have had