Aa
Help Please Need all Info I can get
Hi again I reposted this time with paragraphs for easier reading and added in a bit more info on myself healthwise, sorry about the first posting.
My name is Cat and I am a 52 year old woman.
I am not seeing any specialist right now about the symptoms I am experiencing and have not been diagnosed with anything that has been going on with me lately.
I have a diagnosis of fibromyalgia from 18 years ago, but I never had any parasthesias with that before. Mostly just muscle pain, weakness and stiffness.Which went almost non exsistant when I lived in florida for 11 years. I also have had IBS most of my life but the last year it has improved significantly. Was diagnosis with a very mild case of Crohns (autoimmune disorder) back in 1986 where I had ulcerations throughout my whole large intestine in patches. Took a year to go into remission when on Asacol and have not had symptoms since ( I hear that is highly unusual). I also have Hashimotos thyroiditis (autoimmune disorder) and have been on synthroid for the last 18 years. Anyways thats a brief history of the problems I have had. But consider myself fortunate because most has been pretty mild.
I also have had 3 whiplashes due to seperate car accidents over the many years, the last one being about 5 years ago. So it makes me wonder if I may have some delayed back and neck problems that are now starting to show.
For the last couple of years I have experienced very mild and transient parasthesias on my body. Usually right side of face and on the extremities. Can be sensations of warmth that last a few seconds to burning, sometimes zapping pain, go through a spell of muscle cramping and twitching, tightness, some weakness when climbing stairs but goes and occassionally overwhelming fatgue but usually happens after eating and also go through spells of that.
Most of this has been so mild as to hardly be noticable. Now since December it started with nausea, flu like aches but no fever, lasted weeks then got severe burning sensation in mid back and felt like it radiated from my spine. that has since gone but now I have burning and prickling sensations in my arms, hands, lower legs and feet seems worse after any form of exercise, feet usually burn most of the time, right side of lower part of face sometimes down the neck feels like it is more sensitive but not painful. And when lying down I feel at night sometimes like my legs are vibrating from the inside out, very strange.
Going through an episode of stiffness in the back and neck area, especially when waking up in the morning, also feel a little disjointed in the hips at times and slightly weak in the lower back when I walk or bend forward. I also feel like I got sea legs by that I mean I feel slightly off balance but not where I am going to fall over or fall down, its more a feeling when I move about.
I seem to notice the parasthesias more in the extremities when I am sitting or lying down. Other stimuli will sometimes block the sensations or if I am focused on other things I dont notice it as much.
I also have joint pain mostly in both of my elbows and sometimes the joints of my thumbs.
If I said all this to a doctor they would think I am nuts, I know because I have tried in the past to let the doc know about my previous symptoms and I am not allowed to express it all before being interrupted.
Anyways I was told maybe a virus, so had blood work done and it all came back normal, recently had ANA done and it is normal, RA is normal, sed rate is normal. I want to forget and ignore it all but I am a little concerned because I have to have surgery for a prolasped cervix and bladder and worry that my healing time may be more diffucult due to these symptoms. Do you think I should mention this to my gyno when I see him tomorrow.
Please if anyone can give me any suggestions of what you think may be going on I would appreciate it.
Do you think an MRI of the neck and whole spine would be appropriate, probably would have to pay for it myself as I dont know if a doctor would refer me for one since I have had 2 MRIs done of my head in the past couple of years.
My name is Cat and I am a 52 year old woman.
I am not seeing any specialist right now about the symptoms I am experiencing and have not been diagnosed with anything that has been going on with me lately.
I have a diagnosis of fibromyalgia from 18 years ago, but I never had any parasthesias with that before. Mostly just muscle pain, weakness and stiffness.Which went almost non exsistant when I lived in florida for 11 years. I also have had IBS most of my life but the last year it has improved significantly. Was diagnosis with a very mild case of Crohns (autoimmune disorder) back in 1986 where I had ulcerations throughout my whole large intestine in patches. Took a year to go into remission when on Asacol and have not had symptoms since ( I hear that is highly unusual). I also have Hashimotos thyroiditis (autoimmune disorder) and have been on synthroid for the last 18 years. Anyways thats a brief history of the problems I have had. But consider myself fortunate because most has been pretty mild.
I also have had 3 whiplashes due to seperate car accidents over the many years, the last one being about 5 years ago. So it makes me wonder if I may have some delayed back and neck problems that are now starting to show.
For the last couple of years I have experienced very mild and transient parasthesias on my body. Usually right side of face and on the extremities. Can be sensations of warmth that last a few seconds to burning, sometimes zapping pain, go through a spell of muscle cramping and twitching, tightness, some weakness when climbing stairs but goes and occassionally overwhelming fatgue but usually happens after eating and also go through spells of that.
Most of this has been so mild as to hardly be noticable. Now since December it started with nausea, flu like aches but no fever, lasted weeks then got severe burning sensation in mid back and felt like it radiated from my spine. that has since gone but now I have burning and prickling sensations in my arms, hands, lower legs and feet seems worse after any form of exercise, feet usually burn most of the time, right side of lower part of face sometimes down the neck feels like it is more sensitive but not painful. And when lying down I feel at night sometimes like my legs are vibrating from the inside out, very strange.
Going through an episode of stiffness in the back and neck area, especially when waking up in the morning, also feel a little disjointed in the hips at times and slightly weak in the lower back when I walk or bend forward. I also feel like I got sea legs by that I mean I feel slightly off balance but not where I am going to fall over or fall down, its more a feeling when I move about.
I seem to notice the parasthesias more in the extremities when I am sitting or lying down. Other stimuli will sometimes block the sensations or if I am focused on other things I dont notice it as much.
I also have joint pain mostly in both of my elbows and sometimes the joints of my thumbs.
If I said all this to a doctor they would think I am nuts, I know because I have tried in the past to let the doc know about my previous symptoms and I am not allowed to express it all before being interrupted.
Anyways I was told maybe a virus, so had blood work done and it all came back normal, recently had ANA done and it is normal, RA is normal, sed rate is normal. I want to forget and ignore it all but I am a little concerned because I have to have surgery for a prolasped cervix and bladder and worry that my healing time may be more diffucult due to these symptoms. Do you think I should mention this to my gyno when I see him tomorrow.
Please if anyone can give me any suggestions of what you think may be going on I would appreciate it.
Do you think an MRI of the neck and whole spine would be appropriate, probably would have to pay for it myself as I dont know if a doctor would refer me for one since I have had 2 MRIs done of my head in the past couple of years.
Hi, just wanted to finish up on your answers to my previous post......I have in the past been tested for celiac and was negative (blood test done)
I had a bone scan done about 5 years ago when I lived in Florida and tested positive for osteopenia in my legs, hips and back which now may have progressed to osteoporosis but I have not been checked recently to know if this has progressed or not.
When I had the flu like aches, nausea and stomach pain too and went to the doctor...I had a lot of blood work done for CBC, RBC, infectious, viral, mono, thyroid status (I am on med for this), all was normal.
Now as far as I know I have never been tested for lyme disease. That is something will bring up to the doctor or specialist when I see one.
Thank you and I very much appreciate you responding to me and I hope to get some answers from the doctors here not too far into the future hopefully.
Take care
cat
I had a bone scan done about 5 years ago when I lived in Florida and tested positive for osteopenia in my legs, hips and back which now may have progressed to osteoporosis but I have not been checked recently to know if this has progressed or not.
When I had the flu like aches, nausea and stomach pain too and went to the doctor...I had a lot of blood work done for CBC, RBC, infectious, viral, mono, thyroid status (I am on med for this), all was normal.
Now as far as I know I have never been tested for lyme disease. That is something will bring up to the doctor or specialist when I see one.
Thank you and I very much appreciate you responding to me and I hope to get some answers from the doctors here not too far into the future hopefully.
Take care
cat
Hi and thanks for your comments.......when you say symmetricall I think maybe I did not explain this correctly.....sometimes I think it is somewhat symetrical but other times it definately is not.
The sensations of warmth that I get...which I did not mention in the above is never symmetrical, comes and goes in the same area for a few days then may crop up again somewhere else and linger there on and off and then may not experience it for a long time. I find that the left foot is way worse than the right, in which the right foot only started a short time ago and the left has been going on and off for quite some time.
My back has started to burn again along the spine (this is a new symptom that started in December) but that is not constant it comes and goes and also varies in intensity and all of these symptoms last longer than 24 hours in the same places, meaning it may diminish in severity or come and go in at least a minimum 24 hour period but it does seem to repeat in the same places but not necessarily always at the same time and the same places on opposite sides of the body.
I do have arthritis in my fingers osteoarthritis and that is a totally different pain in which I think the thumbs and my elbows are more along the lines of that.
Hopefully you are correct in your feelings and this has nothing to do with MS.......
I was sent to a neuropsychologist and his report was that I was normal from a psychological view point, no psychosis, depression or anxiety. I was sent initially because of shaking episodes that I had back in 2008, but even back then I was starting to experience very mild parasthesias which have now increased in duration, intensity and areas.
I guess what is hardest for me is that I seem to have episodes of this, then periods where I feel better, then back to these episodes that seem to be increasing with each episode. But this is over a period of years.
There are times when I just want to ignore it all and I think I am maybe getting too focused on it. But when it gets bad I cannot ignore it no matter how hard I try. I took 2 tylenol extra strength rapid release caps and it didnt even make a dent in the burning or pins and needle sensations.
I thought today that things where starting to ease up, but that is not what happened, I agree that I think I really do need to have an MRI of my cervical and I would like the whole spine done too, so as not to leave anything to question.
Oh well.....maybe I will go to the walk in clinic tomorrow.
The sensations of warmth that I get...which I did not mention in the above is never symmetrical, comes and goes in the same area for a few days then may crop up again somewhere else and linger there on and off and then may not experience it for a long time. I find that the left foot is way worse than the right, in which the right foot only started a short time ago and the left has been going on and off for quite some time.
My back has started to burn again along the spine (this is a new symptom that started in December) but that is not constant it comes and goes and also varies in intensity and all of these symptoms last longer than 24 hours in the same places, meaning it may diminish in severity or come and go in at least a minimum 24 hour period but it does seem to repeat in the same places but not necessarily always at the same time and the same places on opposite sides of the body.
I do have arthritis in my fingers osteoarthritis and that is a totally different pain in which I think the thumbs and my elbows are more along the lines of that.
Hopefully you are correct in your feelings and this has nothing to do with MS.......
I was sent to a neuropsychologist and his report was that I was normal from a psychological view point, no psychosis, depression or anxiety. I was sent initially because of shaking episodes that I had back in 2008, but even back then I was starting to experience very mild parasthesias which have now increased in duration, intensity and areas.
I guess what is hardest for me is that I seem to have episodes of this, then periods where I feel better, then back to these episodes that seem to be increasing with each episode. But this is over a period of years.
There are times when I just want to ignore it all and I think I am maybe getting too focused on it. But when it gets bad I cannot ignore it no matter how hard I try. I took 2 tylenol extra strength rapid release caps and it didnt even make a dent in the burning or pins and needle sensations.
I thought today that things where starting to ease up, but that is not what happened, I agree that I think I really do need to have an MRI of my cervical and I would like the whole spine done too, so as not to leave anything to question.
Oh well.....maybe I will go to the walk in clinic tomorrow.
Hi, and we all appreciate the work you did in reformatting this so it is easier to follow with our eyes. Mine are a pair that track along poorly.
My comments fall into two categories. Yes, with your history of trauma to the cervical spine (muliple whiplashes) I think it is mandatory that you have at least a cervical MRI done on the best MRI machine around. You have many paresthesias in many places and damage to the cervical cord causing an MS mimic called Cervical Sphondylotic Myelopathy, is a possibility. I don't see why a doctor would refuse a referral for a cervical spine MRI with your symptoms. It is a separate procedure imaging something that doesn't show up on a brain MRI.
The second is that the description you give of the way your weird sensations act does not suggest MS to me. How infallible am I? Pretty darn so, given that MS pays as little attention to my rules as it does to the neurologists'. But, let me tell you my reasoning.
Your paresthesias really occur all over and seem very transient at any given time. The symptoms that form an MS relapse must occur over a 24 (some say 48) hour period eiother constantly or repeatedly and frequently. If they come and go, they do so in exactly the same place over and over during that 24 hours.
"""now I have burning and prickling sensations in my arms, hands, lower legs and feet seems worse after any form of exercise, feet usually burn most of the time, right side of lower part of face sometimes down the neck feels like it is more sensitive but not painful. And when lying down I feel at night sometimes like my legs are vibrating from the inside out, very strange."""
Your current symptoms are what we call symmetrical. That means they are occurring on both sides in the same places. MS doesn't behave this way typically. the atacks on the nerves in MS are random. They hit here and there. While they may occur some on each side, the two sames at not mirror images of each other. So, in MS we have symptoms that may be bilateral (both sides), but not symmetrical (identical on both sides.) You list hands, arms, feet, legs. The exception to this is the right-sided facial sensitivity.
Your problems of flu-like achiness also do not sound like MS.
The feeling like you are on a boat with the ground swaying under you is common in MS, but also in the general population. It's called Mal d'Embarquement (sp?). It is a type of vertigo -felt to be from a problem in the inner ear - which would be in the peripheral nervous system (so not MS - which is solely the central nervous system - brain and spinal cord.)
Your joint pain may well be osteoarthritis, OA (normal aging of the joints). Elbows can be either osteoarthritis which is non-inflammatory or autoimmune which is inflammatory in nature. Arthritis in the joints of the thumb are most always due to OA
Over-all your symptoms sound "systemic", a medical term for "occurring throughout the body". MS occurs only in the central nervous system which is the brain and spinal cord. Given your long history of various well-documented autoimmune diseases (in which MS is not included, because we have never documented "what" causes MS) I think the focus should be in that area first. There are many autoimmune diseases which can have a negative ANA and a normal Sed Rate. One that comes to mind is Celiac Disease - the gluten-senstivity which can cause many, if not all of your symptoms including neuropathies in the central and peripheral nervous systems, plus arthritis, plus bowel problems, plus fatigue.
But, your symptoms could just just as well be due to an infection and the one most likely is Lyme Disease. Lyme is difficult to diagnose and is often missed by the common screening test, called the ELISA. For people who have had symptoms for years, the better test is the Western Blot done by a lab which specifically looks for and reports the varies bands associated with tick-borne infections.
Any time we try to tell a doctor about problems which involve many different systems in the body, they often get this "deer in the headlights" look and start inching for the door. The easy - and mindless - answer will be "stress", "hypochondriac', "all in your head", etc. It takes a doctor who is willing to LISTEN to us (and yours don't seem to), LOOK at us and examine us thoroughly, and THINK about the various illnesses that show up all over the body. There are many of those. Dismissing the patient as a "crock" is the easy way out of a doctor who stopped using his brains long ago.
So, my best recommendations are to see a good rheumatologist, perhaps a GI doc, and be tested for all the great mimickers, including Lyme Disease.
Is MS ruled out? No, but I just don't get a strong MS'y feel here.
I hope this helps.
Quix
My comments fall into two categories. Yes, with your history of trauma to the cervical spine (muliple whiplashes) I think it is mandatory that you have at least a cervical MRI done on the best MRI machine around. You have many paresthesias in many places and damage to the cervical cord causing an MS mimic called Cervical Sphondylotic Myelopathy, is a possibility. I don't see why a doctor would refuse a referral for a cervical spine MRI with your symptoms. It is a separate procedure imaging something that doesn't show up on a brain MRI.
The second is that the description you give of the way your weird sensations act does not suggest MS to me. How infallible am I? Pretty darn so, given that MS pays as little attention to my rules as it does to the neurologists'. But, let me tell you my reasoning.
Your paresthesias really occur all over and seem very transient at any given time. The symptoms that form an MS relapse must occur over a 24 (some say 48) hour period eiother constantly or repeatedly and frequently. If they come and go, they do so in exactly the same place over and over during that 24 hours.
"""now I have burning and prickling sensations in my arms, hands, lower legs and feet seems worse after any form of exercise, feet usually burn most of the time, right side of lower part of face sometimes down the neck feels like it is more sensitive but not painful. And when lying down I feel at night sometimes like my legs are vibrating from the inside out, very strange."""
Your current symptoms are what we call symmetrical. That means they are occurring on both sides in the same places. MS doesn't behave this way typically. the atacks on the nerves in MS are random. They hit here and there. While they may occur some on each side, the two sames at not mirror images of each other. So, in MS we have symptoms that may be bilateral (both sides), but not symmetrical (identical on both sides.) You list hands, arms, feet, legs. The exception to this is the right-sided facial sensitivity.
Your problems of flu-like achiness also do not sound like MS.
The feeling like you are on a boat with the ground swaying under you is common in MS, but also in the general population. It's called Mal d'Embarquement (sp?). It is a type of vertigo -felt to be from a problem in the inner ear - which would be in the peripheral nervous system (so not MS - which is solely the central nervous system - brain and spinal cord.)
Your joint pain may well be osteoarthritis, OA (normal aging of the joints). Elbows can be either osteoarthritis which is non-inflammatory or autoimmune which is inflammatory in nature. Arthritis in the joints of the thumb are most always due to OA
Over-all your symptoms sound "systemic", a medical term for "occurring throughout the body". MS occurs only in the central nervous system which is the brain and spinal cord. Given your long history of various well-documented autoimmune diseases (in which MS is not included, because we have never documented "what" causes MS) I think the focus should be in that area first. There are many autoimmune diseases which can have a negative ANA and a normal Sed Rate. One that comes to mind is Celiac Disease - the gluten-senstivity which can cause many, if not all of your symptoms including neuropathies in the central and peripheral nervous systems, plus arthritis, plus bowel problems, plus fatigue.
But, your symptoms could just just as well be due to an infection and the one most likely is Lyme Disease. Lyme is difficult to diagnose and is often missed by the common screening test, called the ELISA. For people who have had symptoms for years, the better test is the Western Blot done by a lab which specifically looks for and reports the varies bands associated with tick-borne infections.
Any time we try to tell a doctor about problems which involve many different systems in the body, they often get this "deer in the headlights" look and start inching for the door. The easy - and mindless - answer will be "stress", "hypochondriac', "all in your head", etc. It takes a doctor who is willing to LISTEN to us (and yours don't seem to), LOOK at us and examine us thoroughly, and THINK about the various illnesses that show up all over the body. There are many of those. Dismissing the patient as a "crock" is the easy way out of a doctor who stopped using his brains long ago.
So, my best recommendations are to see a good rheumatologist, perhaps a GI doc, and be tested for all the great mimickers, including Lyme Disease.
Is MS ruled out? No, but I just don't get a strong MS'y feel here.
I hope this helps.
Quix
I do have autoimmune thyroid (hashimotos) and have been on synthroid a thyroid replacement hormone for around 18 years. I had my TSH blood work done recently for it and it is in the normal range, so no need to increase my med.
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