Aa
MS?
Hi and thank you for your time. This is very long with some history of symptoms that may or may not have anything to do with MS or any neuro problem, but I feel I need to explain a bit about my health.
I'm a 37 y/o female from Indiana. In the summer I enjoy swimming daily in our pool and riding my bike. I was using a treadmill and weights on occasion but I have become weaker and weaker over the last few years from something! I feel awful!
It all started with ringing in my ears, some dizziness and painful migraines with "auras", then no pain, just the auras. Now I have jumpy eyes off and on every day with a bit of pain in and behind my eye and the occasional aura and some mild vision changes. My muscles ache and I have numbness in my feet and lower legs. Pins and needles sensations and they're very, very cold! It's a bit worse in my right foot and leg now but began in my left. I also have muscle twitches along my legs, buttocks and back. My legs feel heavy and weak and so do my arms, especially my right arm. I get some crawly sensations down one side of my body. Like goose bump chills. I have a crawly, tingly sensation over my left shoulder when I kind of hunch over my computer. Most days my hands are cold too but not like my feet. I have the tingling in my hands as well, although not as much as in my feet. Warm socks, Ted stockings and electric blanket are needed to help warm my feet and legs yet they stay uncomfortable with some mild pain and tremors as well. This will let up just a bit and then the next day or two it will hit me hard again. Last week while driving to town I began to get the bad numbness in my right foot while it was on the gas pedal! It moved up my leg and was really bothering me. I couldn't get to town quick enough and out of that car! Moving around didn't help though.
I began having the numbness off and on in my legs before and after major surgery 3 years ago. They cut me from hip to hip to remove my right ovary and a large, benign (thank God) ovarian tumor. The surgeon discovered I had lots of abdominal adhesions from previous surgeries; right fallopian tube removed with major surgery, gallbladder out with laproscope, laproscope to remove adhesions for infertility.
When I awoke from the ovarian surgery my legs were badly swollen and wrapped with a pump to help with the swelling and circulation I guess. For some reason my entire left leg and vagina was numb. After the catheter was removed I had problems with urinating and continue to do so.
I've noticed for some time that I can't seem to begin the flow like I used to. Also, I can't empty like I should. I'll sit there and sit there and try to get it all out. I have frequent, urgent need to go but then can't quite get it started sometimes. I've seen my Urologist every year for three or so years and have had cystoscopes and an IVP because I also have chronic microscopic blood. He finally told me he doesn't know what's causing all this. The last time I talked with him was a few months ago after an ultrasound of my kidneys because of increasing back pain and more blood in my urine. I told him over the phone that it felt like I was having spasms in my bladder. He told me if cutting back on coffee and colas didn't help he will prescribe something. In the mean time he moved to another state and I haven't went to his replacement.
I have what I think is bowel spasms too with some occasional constipation and cramping. I take fiber daily to help with this. But what I don't understand is the tremors I have which felt like they began in my abdomen and moved all over my body. Just prior to learning I had the tumor I had began to feel the strange sensation deep in my abdomen. At first it felt like a baby was kicking me. So with a growing belly and this and the real kicker here...breast milk, I thought I was pregnant when I learnt that it was a big ol' tumor instead! My doctor said it might be from the tumor twisting that I felt this sensation. I still have the milk but tests show nothing. I was advised to leave them alone and it would go away. I have and it hasn't! Just something else uncommon about me that baffles my doctors!
The week before my surgery I had a terrible muscle spasm in my shoulder and neck and couldn't move my arm or neck without screaming. I had to go to the hospital for a shot to relax the muscle. Now I have mild spasms in my neck sometimes.
I have a small numb patch above my incision. My legs are numb and really bothering me and now my entire body tremors! Whenever I lean back against a chair or lay down I feel twitching or spasms in my back. Never fails, it's daily along with the muscle twitches. My hands have begun to shake and now my head is a tiny bit too! I feel my entire body doing this while laying in bed. It's just awful! I've tried Xanax and muscle relaxers and nothing helps. The jumpy, jiggly eyes was what finally sent me to my internist last month after staying away for 9 months. I was afraid he'd say it was all in my head!
He examined me and noted that siffness in my legs was becoming worse along with my symptoms over the past few years and now with my vison jumping and odd sensations and since I'm the right age, he thought we might be dealing with MS! He ordered an MRI with Gadolinim and lots of blood work.
I should mention that last year he checked my thyroid, which was normal. He's done lots of blood tests over the last two or three years and everything has been normal. At one time him and my Dermatologist thought I had Lupus because of pain and some areas of erythemia. Red palms, spider angiomas, light rash, etc. Blood was sent to a New York lab and was normal.
The doc finally diagnosed me with Fibromyalgia and CFS. He told me I had Mono some time in the past. He sent me to a Rheumy because he wanted him to look into why I was having lots of aches and pains who also diagnosed Fibro and osteoarthritis. I didn't return to my 6 month check-up before the holidays.
I should also mention that I have bad allergies and really should be taking shots but hate to fool with it. I have a thick discharge that I'm always trying to clear out of my throat. It's very annoying especially while trying to fall asleep. Sometimes it's hard to swallow. I just take allergy pills and sips of NyQuil. I also have a problem with a thick white coating on my tongue that my new dentist just about flipped over. He took pictures of my tongue and prescribed Nystatin and tongue scraping. That didn't help so he got with my Doctor and they put me on Difflucan which didn't help either. I was told it was yeast but when my dr took a sample to grow in the lab he was confused because it didn't appear to be yeast after all. We just kind of gave up. I still have it and no amount of scraping helps. My Phamacist friend isn't so sure about all the stuff going on with me and feels I have some kind of immune problem that they haven't discovered yet. My Dentist feels the same. My Dr is confused because he thinks there's something going on too and was just about sure I had Lupus and that's why he sent me to the Rheumy last year, who told me the slight rash on my nose and forehead and the places on my scalp is dermatitis and not from Lupus!
I have problems with abdominal swelling and lots of belching and discomfort. A couple years ago I was admitted to the hospital because of swelling, vomiting, enlarged liver and elevated liver enzymes. No hepatitis, etc. was released when they went back to normal. Occasionally I have the same symptoms for a day or two without the vomiting so haven't went back to the E.R. when I feel the pain deep inside in the liver area and have the swelling.
Since I've told you just about everything I can think of I suppose I should mention this but it's very embarrasing! I have genital herpes that I control with acyclovor but was having bad attacks prior to taking it daily. Now I take just one pill a day when or if I remember to and am keeping it under control. In recent years whenever I did have a sore it appeared on my tailbone and not on my vagina! Very achy, flu like symptoms with the attack and painful when sitting. I've been married for nearly 13 years and together for over 18. Thank God he's never caught this!
I don't know if I've ever been tested for Lymes disease. Before we starting spraying our yard and treating our pets we have found several crawling on us and a few attached but no rashes. Of course the one or two found on my head I guess could have left a rash that we never noticed. I suppose I should ask the neuro about this.
Sunday and Monday I was very sick, weak and my feet and legs were worse. I called a free service through our insurance and spoke with a nurse who advised me to go to the E.R. I didn't go and the next day, yesterday, I felt lots better after having some diarrhea the night before and my legs acting up. This morning I felt bad again.
So here I am today with my jumpy eyes, and cold hands, weak right arm trying to type this VERY long letter with my body tremors and my cold, cold numb foot and leg and have probable MS but my MRI was normal. I have an appt with a Neuro the 26th. What do you think? Can one have MS and a negative brain MRI? What do you suggest? Can adhesions cause pinching of nerves and numbness? Can the herpes virus cause any of this? Do any of my symptoms sound like MS to you? Should I wait to see my neuro or should I go to the hospital now? I don't know what good that would do but the nurse I spoke to strongly advised not waiting. She felt I have some kind of acute attack and might be having a circulation problem with my leg.
Thank you so much for your time and any help you might be able to offer.
I'm a 37 y/o female from Indiana. In the summer I enjoy swimming daily in our pool and riding my bike. I was using a treadmill and weights on occasion but I have become weaker and weaker over the last few years from something! I feel awful!
It all started with ringing in my ears, some dizziness and painful migraines with "auras", then no pain, just the auras. Now I have jumpy eyes off and on every day with a bit of pain in and behind my eye and the occasional aura and some mild vision changes. My muscles ache and I have numbness in my feet and lower legs. Pins and needles sensations and they're very, very cold! It's a bit worse in my right foot and leg now but began in my left. I also have muscle twitches along my legs, buttocks and back. My legs feel heavy and weak and so do my arms, especially my right arm. I get some crawly sensations down one side of my body. Like goose bump chills. I have a crawly, tingly sensation over my left shoulder when I kind of hunch over my computer. Most days my hands are cold too but not like my feet. I have the tingling in my hands as well, although not as much as in my feet. Warm socks, Ted stockings and electric blanket are needed to help warm my feet and legs yet they stay uncomfortable with some mild pain and tremors as well. This will let up just a bit and then the next day or two it will hit me hard again. Last week while driving to town I began to get the bad numbness in my right foot while it was on the gas pedal! It moved up my leg and was really bothering me. I couldn't get to town quick enough and out of that car! Moving around didn't help though.
I began having the numbness off and on in my legs before and after major surgery 3 years ago. They cut me from hip to hip to remove my right ovary and a large, benign (thank God) ovarian tumor. The surgeon discovered I had lots of abdominal adhesions from previous surgeries; right fallopian tube removed with major surgery, gallbladder out with laproscope, laproscope to remove adhesions for infertility.
When I awoke from the ovarian surgery my legs were badly swollen and wrapped with a pump to help with the swelling and circulation I guess. For some reason my entire left leg and vagina was numb. After the catheter was removed I had problems with urinating and continue to do so.
I've noticed for some time that I can't seem to begin the flow like I used to. Also, I can't empty like I should. I'll sit there and sit there and try to get it all out. I have frequent, urgent need to go but then can't quite get it started sometimes. I've seen my Urologist every year for three or so years and have had cystoscopes and an IVP because I also have chronic microscopic blood. He finally told me he doesn't know what's causing all this. The last time I talked with him was a few months ago after an ultrasound of my kidneys because of increasing back pain and more blood in my urine. I told him over the phone that it felt like I was having spasms in my bladder. He told me if cutting back on coffee and colas didn't help he will prescribe something. In the mean time he moved to another state and I haven't went to his replacement.
I have what I think is bowel spasms too with some occasional constipation and cramping. I take fiber daily to help with this. But what I don't understand is the tremors I have which felt like they began in my abdomen and moved all over my body. Just prior to learning I had the tumor I had began to feel the strange sensation deep in my abdomen. At first it felt like a baby was kicking me. So with a growing belly and this and the real kicker here...breast milk, I thought I was pregnant when I learnt that it was a big ol' tumor instead! My doctor said it might be from the tumor twisting that I felt this sensation. I still have the milk but tests show nothing. I was advised to leave them alone and it would go away. I have and it hasn't! Just something else uncommon about me that baffles my doctors!
The week before my surgery I had a terrible muscle spasm in my shoulder and neck and couldn't move my arm or neck without screaming. I had to go to the hospital for a shot to relax the muscle. Now I have mild spasms in my neck sometimes.
I have a small numb patch above my incision. My legs are numb and really bothering me and now my entire body tremors! Whenever I lean back against a chair or lay down I feel twitching or spasms in my back. Never fails, it's daily along with the muscle twitches. My hands have begun to shake and now my head is a tiny bit too! I feel my entire body doing this while laying in bed. It's just awful! I've tried Xanax and muscle relaxers and nothing helps. The jumpy, jiggly eyes was what finally sent me to my internist last month after staying away for 9 months. I was afraid he'd say it was all in my head!
He examined me and noted that siffness in my legs was becoming worse along with my symptoms over the past few years and now with my vison jumping and odd sensations and since I'm the right age, he thought we might be dealing with MS! He ordered an MRI with Gadolinim and lots of blood work.
I should mention that last year he checked my thyroid, which was normal. He's done lots of blood tests over the last two or three years and everything has been normal. At one time him and my Dermatologist thought I had Lupus because of pain and some areas of erythemia. Red palms, spider angiomas, light rash, etc. Blood was sent to a New York lab and was normal.
The doc finally diagnosed me with Fibromyalgia and CFS. He told me I had Mono some time in the past. He sent me to a Rheumy because he wanted him to look into why I was having lots of aches and pains who also diagnosed Fibro and osteoarthritis. I didn't return to my 6 month check-up before the holidays.
I should also mention that I have bad allergies and really should be taking shots but hate to fool with it. I have a thick discharge that I'm always trying to clear out of my throat. It's very annoying especially while trying to fall asleep. Sometimes it's hard to swallow. I just take allergy pills and sips of NyQuil. I also have a problem with a thick white coating on my tongue that my new dentist just about flipped over. He took pictures of my tongue and prescribed Nystatin and tongue scraping. That didn't help so he got with my Doctor and they put me on Difflucan which didn't help either. I was told it was yeast but when my dr took a sample to grow in the lab he was confused because it didn't appear to be yeast after all. We just kind of gave up. I still have it and no amount of scraping helps. My Phamacist friend isn't so sure about all the stuff going on with me and feels I have some kind of immune problem that they haven't discovered yet. My Dentist feels the same. My Dr is confused because he thinks there's something going on too and was just about sure I had Lupus and that's why he sent me to the Rheumy last year, who told me the slight rash on my nose and forehead and the places on my scalp is dermatitis and not from Lupus!
I have problems with abdominal swelling and lots of belching and discomfort. A couple years ago I was admitted to the hospital because of swelling, vomiting, enlarged liver and elevated liver enzymes. No hepatitis, etc. was released when they went back to normal. Occasionally I have the same symptoms for a day or two without the vomiting so haven't went back to the E.R. when I feel the pain deep inside in the liver area and have the swelling.
Since I've told you just about everything I can think of I suppose I should mention this but it's very embarrasing! I have genital herpes that I control with acyclovor but was having bad attacks prior to taking it daily. Now I take just one pill a day when or if I remember to and am keeping it under control. In recent years whenever I did have a sore it appeared on my tailbone and not on my vagina! Very achy, flu like symptoms with the attack and painful when sitting. I've been married for nearly 13 years and together for over 18. Thank God he's never caught this!
I don't know if I've ever been tested for Lymes disease. Before we starting spraying our yard and treating our pets we have found several crawling on us and a few attached but no rashes. Of course the one or two found on my head I guess could have left a rash that we never noticed. I suppose I should ask the neuro about this.
Sunday and Monday I was very sick, weak and my feet and legs were worse. I called a free service through our insurance and spoke with a nurse who advised me to go to the E.R. I didn't go and the next day, yesterday, I felt lots better after having some diarrhea the night before and my legs acting up. This morning I felt bad again.
So here I am today with my jumpy eyes, and cold hands, weak right arm trying to type this VERY long letter with my body tremors and my cold, cold numb foot and leg and have probable MS but my MRI was normal. I have an appt with a Neuro the 26th. What do you think? Can one have MS and a negative brain MRI? What do you suggest? Can adhesions cause pinching of nerves and numbness? Can the herpes virus cause any of this? Do any of my symptoms sound like MS to you? Should I wait to see my neuro or should I go to the hospital now? I don't know what good that would do but the nurse I spoke to strongly advised not waiting. She felt I have some kind of acute attack and might be having a circulation problem with my leg.
Thank you so much for your time and any help you might be able to offer.
Hi Aura
Have you been tested for a B-12 deficiency? Two years ago I was tested for this condition (pernicious anemia) and also tested for MS. My MRI showed areas of demylination and my neuro felt was suggested for M.S. This was before my blood tests were returned and my methymalonic acid was high and my B-12 levels were low (l87 borderline was 200--each lab is diferent) B-12 can cause demylination in the brain and spine. It also can cause some of the symptoms that you describe. Check to see if this test was done. It might be the answer to some of your problems.
Good luck
Rosemary
Have you been tested for a B-12 deficiency? Two years ago I was tested for this condition (pernicious anemia) and also tested for MS. My MRI showed areas of demylination and my neuro felt was suggested for M.S. This was before my blood tests were returned and my methymalonic acid was high and my B-12 levels were low (l87 borderline was 200--each lab is diferent) B-12 can cause demylination in the brain and spine. It also can cause some of the symptoms that you describe. Check to see if this test was done. It might be the answer to some of your problems.
Good luck
Rosemary
Amy, Thank you for commenting. That's exactly how I feel! I was shocked with Marcy's comment. I thought that this forum was a way to share, hopefully find answers and support each other...not attack when someone is down! I just want this nightmare of not feeling well over. I don't understand how some people can be so cruel! I can proudly say that I'm not nor never will be a mean person. I have compassion and think that most on here, like you, do too. There always has to be one bad one out of the bunch I guess. I wonder if being hateful made her feel good the rest of the day?
Why don't we all show a little compassion for one another! It is a scary thing when we don't feel well for days or weeks or years on end, and maybe all we need is a little reassurance from someone! I hope everyone finds answers to all of these terrible symptoms and diseases soon! God Bless.
I don't think I deserved the attack from you. I don't spend long hours on the internet looking for answers. I do have a life and a real job. Thank You very much. Why not attack others that are concerned and wrote a long history of their symptoms as well? I saw my neuro today and he thinks I have a spinal disc problem and not MS but I thought I'd ask here first while I had to wait so long for this apppointment. I hope you never have to suffer with annoying symptoms and no answers and then have someone call you a hypochondriac for writing about them and trying to find some answers from anyone who might have a clue!
Sounds to me as if you are a person who is way too self-absorbed and a hypochondriac. My advice would be to get a real job, find a hobby, do volunteer work and stop obsessing about your medical problems. Also, stop reading the Internet for hours at a time to find the answers.
Doctor, I'm sorry I rambled on and on and wasn't clear enough.
My surgery was over three years ago. I can't remember the name of the ovarian tumor. I do recall that it was a fast growing type of tumor. He told me that the biggest he had witnessed in a patient was 35 lbs! Mine was the size of a large grapefruit.
The reason I mentioned the surgery is because my first symptoms began around that time. I was wondering if it had anything to do with all of this and how? Adhesions maybe?
Over these last three years I'd notice my eyes would jump every now and then. My leg would tingle and feel numb here and there. But since this past December, after the flu, symptoms have pretty much stayed. I have them nearly every day and am very uncomfortable.
My most troublesome symptoms:
jumpy vision
numb, cold legs
tingly hands and feet
tremors
fatigue
Thanks again for your time. Guess I'll have to be patient until I see the neuro the 26th. I'm relieved to know that I probably don't have MS!
My surgery was over three years ago. I can't remember the name of the ovarian tumor. I do recall that it was a fast growing type of tumor. He told me that the biggest he had witnessed in a patient was 35 lbs! Mine was the size of a large grapefruit.
The reason I mentioned the surgery is because my first symptoms began around that time. I was wondering if it had anything to do with all of this and how? Adhesions maybe?
Over these last three years I'd notice my eyes would jump every now and then. My leg would tingle and feel numb here and there. But since this past December, after the flu, symptoms have pretty much stayed. I have them nearly every day and am very uncomfortable.
My most troublesome symptoms:
jumpy vision
numb, cold legs
tingly hands and feet
tremors
fatigue
Thanks again for your time. Guess I'll have to be patient until I see the neuro the 26th. I'm relieved to know that I probably don't have MS!
If you have seen ticks on your body, you should definately get tested for Lyme disease!
Make sure they use the Western Blot test--it is the most accurate.
Make sure they use the Western Blot test--it is the most accurate.
Dear Aura:
I am sorry that your having so many symptoms. From the long and convoluted posting, I am not exactly sure when what occurred and what is the most bothersome to you now. Many of the symptoms that you have told me about may have been the result of the benign ovarian tumor? But you didn't tell me the type of tumor it was so it makes it difficult for me to extrapolate symptoms. Your symptoms do not have the waxing and waning time course of MS and together with all the normal labs and MRI of the brain, I would put MS as the etiology of your symptoms way down the list. The temporal relationship with your symptoms and surgery make me think that some of your symptoms are the result of the surgery, but without examining you it makes it difficult to better assess. Unless you live in an area of lyme disease, I would think that Lyme is not an issue (however, if you have travelled to an area this might make this alittle more plausible). I know you spent alot of time writing this posting, and I wish I could help more. Maybe a good long visit with your neurologist might help alittle. A quick investigation of your spasms with an spine MRI and maybe an EMG might find some structural damage or peripheral neuropathy causing the spasms. A full medical going over might uncover some vascular or autoimmune problems inducing temperature changes in your extremities. Sorry that I am not much help.
Sincerely,
CCF Neuro MD
I am sorry that your having so many symptoms. From the long and convoluted posting, I am not exactly sure when what occurred and what is the most bothersome to you now. Many of the symptoms that you have told me about may have been the result of the benign ovarian tumor? But you didn't tell me the type of tumor it was so it makes it difficult for me to extrapolate symptoms. Your symptoms do not have the waxing and waning time course of MS and together with all the normal labs and MRI of the brain, I would put MS as the etiology of your symptoms way down the list. The temporal relationship with your symptoms and surgery make me think that some of your symptoms are the result of the surgery, but without examining you it makes it difficult to better assess. Unless you live in an area of lyme disease, I would think that Lyme is not an issue (however, if you have travelled to an area this might make this alittle more plausible). I know you spent alot of time writing this posting, and I wish I could help more. Maybe a good long visit with your neurologist might help alittle. A quick investigation of your spasms with an spine MRI and maybe an EMG might find some structural damage or peripheral neuropathy causing the spasms. A full medical going over might uncover some vascular or autoimmune problems inducing temperature changes in your extremities. Sorry that I am not much help.
Sincerely,
CCF Neuro MD
I forgot to mention the cogitive problems. I have problems with my memory and finding the right words during a conversation. I feel like I'm never fully awake and suffer terrible fatigue!
I also noticed that I can't hold still from the tremors. I kind of wobble I guess you'd call it. I'm an artist and can't paint right now because of this and the weakness in my arm and my hand tremors. All of this began to get worse since the holidays and a bout with the flu. I used to have constant low-grade fevers. Now I have a normal temp or below normal with daily chills.
I also noticed that I can't hold still from the tremors. I kind of wobble I guess you'd call it. I'm an artist and can't paint right now because of this and the weakness in my arm and my hand tremors. All of this began to get worse since the holidays and a bout with the flu. I used to have constant low-grade fevers. Now I have a normal temp or below normal with daily chills.
Hi There,
Same things here, The crawling numbness and the tingles are awful. I am 40 and have had this for several years. My vision is also jumpy and gets blurred and double and I see all sorts of things...Just like you..
I have been told Migraines with aura without pain..I have had every blood test in the book. Several MRI and CTs of the brain and back. all normal..
Then a Neurologist suggested Porphyria because of my symtpoms and family history And its very hard to get a Positive DX of Porphyria and I finally did. I was told I had Fibro and CFS too and sent to a Rheumy..You may want to get a 24 hour porphyrin screen done when your symptoms are really bad...It's worth a shot. Just be sure its collected right and processed right and you may get a accurate answer...
You cannot expose the urine to light and it must be kept cold and transported quickly to Mayo Labs one of the few places that does accurate poprh screening...
I still get very scared by my symptoms and have a million different Diagnois before the porphyria was Diagnoised...I know the symptoms well but I still panic which does not help...
Take care and Good Luck to you and I hope you can get some answers
Betty Powell
Same things here, The crawling numbness and the tingles are awful. I am 40 and have had this for several years. My vision is also jumpy and gets blurred and double and I see all sorts of things...Just like you..
I have been told Migraines with aura without pain..I have had every blood test in the book. Several MRI and CTs of the brain and back. all normal..
Then a Neurologist suggested Porphyria because of my symtpoms and family history And its very hard to get a Positive DX of Porphyria and I finally did. I was told I had Fibro and CFS too and sent to a Rheumy..You may want to get a 24 hour porphyrin screen done when your symptoms are really bad...It's worth a shot. Just be sure its collected right and processed right and you may get a accurate answer...
You cannot expose the urine to light and it must be kept cold and transported quickly to Mayo Labs one of the few places that does accurate poprh screening...
I still get very scared by my symptoms and have a million different Diagnois before the porphyria was Diagnoised...I know the symptoms well but I still panic which does not help...
Take care and Good Luck to you and I hope you can get some answers
Betty Powell
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