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Number One-Million-And-One - Symptom Questions
Hello everyone! I thank you in advance for reading my post, as I realize I have written a book ;)
I am a 46 year old woman. For about ten years now, I have had neck pain and some symptoms that I thought were related to it. In 2007 I was diagnosed with two degenerated vertebrae (C4 & 5) and a compressed disc, as well as bone spurs and calcification in the neck. I see a PMD every other month and receive trigger point injections for hardened muscles in my shoulders and upper back. I also receive physical and massage therapy twice per week. Previously, I’ve dismissed some of the symptoms I had because they would go away around the time I would consider mentioning them. Since I was no longer having the symptoms, or they had lessened considerably, I thought maybe my PMD would just think I was nuts.
Within the last couple of years (and markedly so during the past nine months) I have been noticing an increase in symptoms and cycles of symptoms. While in the past they have gone away for the most part (except a few things like the tingling, heat sensitivity, dropsies and balance issues), they are coming back more frequently, and it seems as though more symptoms occur each time.
Almost four weeks ago, I had several symptoms hit me at once, and I am still experiencing them. I thought that, okay, this “flare-up” or whatever it is has been going on for going on a month now so I guess I’d better look into it. The things that concern me are:
1. Fatigue. I can barely find the strength to get out of bed and take a shower. In the early afternoon, I become so drowsy that I have been afraid I will fall asleep at my desk. As soon as I get home, I have to go lay down because I am so tired. Laying on my back, using an ergonomic pillow and ice-pack on my neck where it curves to my skull is pure heaven.
2. Heat sensitive. I used to love taking a hot shower; now my showers are lukewarm because hot showers make me feel like I am being pelted with tiny cinders and I feel very weak, like my body is ten times its weight. I also enjoyed simply being outside, especially during the warmer months. Summer was my favorite time of the year. Now, even in the evenings, if it is hot, I do not even want to sit on the patio and enjoy our water features or work in my garden.
3. Difficulty concentrating or staying on task, or simply “going blank.” For example, during the middle of a presentation I will simply forget what I was saying. I have been in a professional role for 23 years and have spoken in front of many people so I am not nervous at all. Yet, I will be right in the middle of a presentation I know very well or asked a question during a meeting and my train of thought simply derails. Also, as with typing this post, I will be right in the middle of typing when suddenly I stop and find myself simply staring at the screen.
4. I can’t seem to recall simple names of things, or I will refer to something as the wrong item. The other night I became very frustrated because I could not think of the term “crock pot.”
5. Increased stiffness in my neck.
6. Shoulder muscles on the right side are rock hard. Physical therapist has noted a 30 degree reduction in range of motion when I turn my head to the left.
7. Pain at the base of my skull on the right side. Sometimes I barely notice it, other times it is very strong and will even radiate into my right shoulder socket and into my upper arm.
8. Electric shock sensation when I move my neck a certain way or suddenly.
9. My vision blurs at times, and my eyes feel tired. If this makes any sense, my eyes feel stiff and I feel the need to “flex” them, like moving them back and forth or closing my eyes tightly.
10. Thrumming, or feeling like a current is running through my right arm and right leg. Not really painful, just odd.
11. Twitching, especially my right hand and foot.
12. Trembling, shakiness and weakness in my hands. For example, my hand trembles if I lift a gallon of milk or a pot of coffee.
13. The “dropsies.” For example, I almost always drop the lid when I open a bottle of soda, or my keys just fall out of my hand.
14. When walking, my right foot will “catch” or stumble over nothing, as though it comes down too soon and I don’t realize it and begin stepping with my left foot. Very embarrassing—I did this at FIL’s cookout when walking around the pool. I almost fell in front of everyone and scraped the top of my left foot, which of course bled all over the place.
15. At times the floor “moves” while I’m walking. It feels as though I’m in an elevator when it is stopping.
16. A vibrating feeling in my right foot, like one would feel with a foot massager.
17. While driving, my right foot will begin jumping when I apply the brake to stop.
18. Easily lose balance. For example, I have to be very careful getting in and out of the shower (have come close to falling several times), and forget my standing on one leg to put slacks on—I have to sit on the bed!
19. Light headedness. Sometimes when I stand I have to either sit back down or grab something because I feel like I may faint.
20. Cannot stand for very long. I feel weighted down or weak.
21. Problems going down the stairs. Very odd, at times I will be walking down the stairs and then it is like my right foot doesn’t know where to go, and even when I look down I can’t tell where I am supposed to place my foot. I am now very careful on the stairs—I have fallen twice the last few weeks. Luckily only my rear end and pride were hurt ;)
22. When I use the ladies’ room, sometimes I am not done when I think I’m done. I will stop and think I am finished, then feel the sensation to go again, and sometimes even a third time. I also visit the ladies’ room more frequently. I do drink a lot of water so at first I didn’t think much about it, however; it is getting where I have to go to the ladies’ room multiple times during the day and wake up in the night and have to go at least once, sometimes more often than that.
23. Strange sensations, like drops of water hitting my face, being bitten or stung on the arm or leg, or the feeling that a piece of tape is stuck between my second and third toes of my right foot. I also get the “squirmy bug.” That’s when it feels like I am standing on a bug and it is wiggling under my foot. I tell myself I’m not going to check because I know nothing is there, yet I always do just in case. Another one is that I can feel (or so it seems) each individual strand of hair on my head and its movement.
24. I itch a lot.
25. Extreme sensitivity to touch with a jerking/kicking reaction. The right side of my waist, right hip, and right thigh are worst.
26. Momentary paralysis (and the one that scared me into finally doing some research and writing this post). That is the only term I can think of to describe it. The other evening I was laying on my right side, with the ice pack (my new best friend) beneath my neck. Suddenly I had this feeling of being squeezed around the middle, my body tensed, and there were some zappy/thrumming sensations. About that time, Hubby came in and said that he was going to take a shower. I was going to turn and respond, but I couldn’t move. This lasted a few seconds (in my estimation). My muscles were sore after that, especially my middle.
I’m not convinced I have MS, yet at the same time I can’t discount that possibility either. I don't know if I should just tell my PMD my symptoms and see what she says at my next routine visit, try to get in earlier, or not tell her at all, because even to me this all sounds incredible Maybe part of the reason I haven’t said anything is because although I know something is wrong, deep down I don’t want to know what it is.
Thank you very much for reading. Any input would be appreciated.
.
I am a 46 year old woman. For about ten years now, I have had neck pain and some symptoms that I thought were related to it. In 2007 I was diagnosed with two degenerated vertebrae (C4 & 5) and a compressed disc, as well as bone spurs and calcification in the neck. I see a PMD every other month and receive trigger point injections for hardened muscles in my shoulders and upper back. I also receive physical and massage therapy twice per week. Previously, I’ve dismissed some of the symptoms I had because they would go away around the time I would consider mentioning them. Since I was no longer having the symptoms, or they had lessened considerably, I thought maybe my PMD would just think I was nuts.
Within the last couple of years (and markedly so during the past nine months) I have been noticing an increase in symptoms and cycles of symptoms. While in the past they have gone away for the most part (except a few things like the tingling, heat sensitivity, dropsies and balance issues), they are coming back more frequently, and it seems as though more symptoms occur each time.
Almost four weeks ago, I had several symptoms hit me at once, and I am still experiencing them. I thought that, okay, this “flare-up” or whatever it is has been going on for going on a month now so I guess I’d better look into it. The things that concern me are:
1. Fatigue. I can barely find the strength to get out of bed and take a shower. In the early afternoon, I become so drowsy that I have been afraid I will fall asleep at my desk. As soon as I get home, I have to go lay down because I am so tired. Laying on my back, using an ergonomic pillow and ice-pack on my neck where it curves to my skull is pure heaven.
2. Heat sensitive. I used to love taking a hot shower; now my showers are lukewarm because hot showers make me feel like I am being pelted with tiny cinders and I feel very weak, like my body is ten times its weight. I also enjoyed simply being outside, especially during the warmer months. Summer was my favorite time of the year. Now, even in the evenings, if it is hot, I do not even want to sit on the patio and enjoy our water features or work in my garden.
3. Difficulty concentrating or staying on task, or simply “going blank.” For example, during the middle of a presentation I will simply forget what I was saying. I have been in a professional role for 23 years and have spoken in front of many people so I am not nervous at all. Yet, I will be right in the middle of a presentation I know very well or asked a question during a meeting and my train of thought simply derails. Also, as with typing this post, I will be right in the middle of typing when suddenly I stop and find myself simply staring at the screen.
4. I can’t seem to recall simple names of things, or I will refer to something as the wrong item. The other night I became very frustrated because I could not think of the term “crock pot.”
5. Increased stiffness in my neck.
6. Shoulder muscles on the right side are rock hard. Physical therapist has noted a 30 degree reduction in range of motion when I turn my head to the left.
7. Pain at the base of my skull on the right side. Sometimes I barely notice it, other times it is very strong and will even radiate into my right shoulder socket and into my upper arm.
8. Electric shock sensation when I move my neck a certain way or suddenly.
9. My vision blurs at times, and my eyes feel tired. If this makes any sense, my eyes feel stiff and I feel the need to “flex” them, like moving them back and forth or closing my eyes tightly.
10. Thrumming, or feeling like a current is running through my right arm and right leg. Not really painful, just odd.
11. Twitching, especially my right hand and foot.
12. Trembling, shakiness and weakness in my hands. For example, my hand trembles if I lift a gallon of milk or a pot of coffee.
13. The “dropsies.” For example, I almost always drop the lid when I open a bottle of soda, or my keys just fall out of my hand.
14. When walking, my right foot will “catch” or stumble over nothing, as though it comes down too soon and I don’t realize it and begin stepping with my left foot. Very embarrassing—I did this at FIL’s cookout when walking around the pool. I almost fell in front of everyone and scraped the top of my left foot, which of course bled all over the place.
15. At times the floor “moves” while I’m walking. It feels as though I’m in an elevator when it is stopping.
16. A vibrating feeling in my right foot, like one would feel with a foot massager.
17. While driving, my right foot will begin jumping when I apply the brake to stop.
18. Easily lose balance. For example, I have to be very careful getting in and out of the shower (have come close to falling several times), and forget my standing on one leg to put slacks on—I have to sit on the bed!
19. Light headedness. Sometimes when I stand I have to either sit back down or grab something because I feel like I may faint.
20. Cannot stand for very long. I feel weighted down or weak.
21. Problems going down the stairs. Very odd, at times I will be walking down the stairs and then it is like my right foot doesn’t know where to go, and even when I look down I can’t tell where I am supposed to place my foot. I am now very careful on the stairs—I have fallen twice the last few weeks. Luckily only my rear end and pride were hurt ;)
22. When I use the ladies’ room, sometimes I am not done when I think I’m done. I will stop and think I am finished, then feel the sensation to go again, and sometimes even a third time. I also visit the ladies’ room more frequently. I do drink a lot of water so at first I didn’t think much about it, however; it is getting where I have to go to the ladies’ room multiple times during the day and wake up in the night and have to go at least once, sometimes more often than that.
23. Strange sensations, like drops of water hitting my face, being bitten or stung on the arm or leg, or the feeling that a piece of tape is stuck between my second and third toes of my right foot. I also get the “squirmy bug.” That’s when it feels like I am standing on a bug and it is wiggling under my foot. I tell myself I’m not going to check because I know nothing is there, yet I always do just in case. Another one is that I can feel (or so it seems) each individual strand of hair on my head and its movement.
24. I itch a lot.
25. Extreme sensitivity to touch with a jerking/kicking reaction. The right side of my waist, right hip, and right thigh are worst.
26. Momentary paralysis (and the one that scared me into finally doing some research and writing this post). That is the only term I can think of to describe it. The other evening I was laying on my right side, with the ice pack (my new best friend) beneath my neck. Suddenly I had this feeling of being squeezed around the middle, my body tensed, and there were some zappy/thrumming sensations. About that time, Hubby came in and said that he was going to take a shower. I was going to turn and respond, but I couldn’t move. This lasted a few seconds (in my estimation). My muscles were sore after that, especially my middle.
I’m not convinced I have MS, yet at the same time I can’t discount that possibility either. I don't know if I should just tell my PMD my symptoms and see what she says at my next routine visit, try to get in earlier, or not tell her at all, because even to me this all sounds incredible Maybe part of the reason I haven’t said anything is because although I know something is wrong, deep down I don’t want to know what it is.
Thank you very much for reading. Any input would be appreciated.
.
Best Answer
I went to the dentist back in February and all he found was a small cavity which he filled. Then didn't have any more "tooth pain" again until recently. It wakes me in the night, lasts for a few hours, then goes away. I haven't gone back to the dentist because I just didn't think it is logical that all of the teeth on my right side would hurt at the same time, and if they were in that bad of shape, the pain wouldn't simply go away. That is what is so strange about all of this. Symptoms come and go. The stiff neck and shoulders and neck pain are pretty consistent though. Always present to some extent. The forgetfulness, blanking out, and calling things by the wrong name is pretty consistent too.
It is a week until my PMD appointment. I hope she takes me seriously.
Thanks you and everyone for your replies.
Minnie
It is a week until my PMD appointment. I hope she takes me seriously.
Thanks you and everyone for your replies.
Minnie
Hi Minnie,
No, I don't get the jaw stabbing issues thank God. But, that pain in the base of the head is horrifying. I cannot imagine having the face probs on top. Definitely keep your thumb on these docs for "specific" issues like this. If you have to go to the dentist to rule out a problem there, do it. And, then press the doc to determine the cause of that.
-shell
No, I don't get the jaw stabbing issues thank God. But, that pain in the base of the head is horrifying. I cannot imagine having the face probs on top. Definitely keep your thumb on these docs for "specific" issues like this. If you have to go to the dentist to rule out a problem there, do it. And, then press the doc to determine the cause of that.
-shell
I know how miserable it can be to feel so sick, to know there is something wrong, but doctors can't figure it out. There is no excuse for your PCP to make you feel stupid, but unfortunately, that is not an uncommon experience from what I have read here and and on other forums. :(
Hang in there! And don't apologize for feeling worn out. Guilt only increases stress, which is not good regardless of what you have. You might try Magnesium supplements, Vit D3, and Vit B12 (methyl-b12 shots or sublingual) to help with the fatigue while you seek out the cause.
(And just to clarify, Lyme can be diagnosed early with a spreading red rash and a known tick bite, or just a bulls eye rash (even if tick bite not found). I believe that Lyme is the only known cause of the distinctive bulls eye. Some docs will provide antibiotics for a tick bite without a rash, just in case. Lyme cannot be excluded by a negative blood test.)
Hang in there! And don't apologize for feeling worn out. Guilt only increases stress, which is not good regardless of what you have. You might try Magnesium supplements, Vit D3, and Vit B12 (methyl-b12 shots or sublingual) to help with the fatigue while you seek out the cause.
(And just to clarify, Lyme can be diagnosed early with a spreading red rash and a known tick bite, or just a bulls eye rash (even if tick bite not found). I believe that Lyme is the only known cause of the distinctive bulls eye. Some docs will provide antibiotics for a tick bite without a rash, just in case. Lyme cannot be excluded by a negative blood test.)
The rash was widespread and splotchy with some raised areas toward the middle parts. It was everywhere and itched like crazy. Another thing, I get rashes that are similar, mostly on my chest, neck, back of neck roughly twice a year. I have gone to my PCP for them and he said I must be allergic to a new detergent or something, gave me Prednisone and a creme, told me to take Benadryl, and sent me on my way. Who knows, maybe that's what it was. I don't know any more. I just know that I am a shell of my former self and I hate it.
Good grief, this is all so overwhelming! I am so darned tired and weak and in pain to some extent all the time. I know poor DH must be getting frustrated because I sure am. I find myself apologizing constantly because I need to lay down, like I am right now. I am on an ice pack posting from my phone. He says that there is no need to be sorry and is sweet and understanding. Yet I still feel guilty.
I fear I have let these symptoms of whatever I have go on too long. I wish people didn't have to worry about being labeled as a hypochondriac... my PCP made me feel so stupid before. Regardless, I am going to first tell my PMD and at least start the journey of finding out what is wrong.
I didn't know that you couldn't be diagnosed one way or another about Lyme right away. She did specifically say that, too. Maybe because we aren't supposed to be a Lyme hotshot here in Middle Tennessee?!
Anyway, thanks to you and everyone who has responded. I will definitely keep you posted.
Hugs to you all,
Minnie
Good grief, this is all so overwhelming! I am so darned tired and weak and in pain to some extent all the time. I know poor DH must be getting frustrated because I sure am. I find myself apologizing constantly because I need to lay down, like I am right now. I am on an ice pack posting from my phone. He says that there is no need to be sorry and is sweet and understanding. Yet I still feel guilty.
I fear I have let these symptoms of whatever I have go on too long. I wish people didn't have to worry about being labeled as a hypochondriac... my PCP made me feel so stupid before. Regardless, I am going to first tell my PMD and at least start the journey of finding out what is wrong.
I didn't know that you couldn't be diagnosed one way or another about Lyme right away. She did specifically say that, too. Maybe because we aren't supposed to be a Lyme hotshot here in Middle Tennessee?!
Anyway, thanks to you and everyone who has responded. I will definitely keep you posted.
Hugs to you all,
Minnie
Depending on what your "allergic reaction" looked like, it could have been a Lyme rash. Lyme rashes can be the well publicized bulls eye, but they are equally likely to be flat with uneven borders, bumpy in the middle, or multiple rashes in a widespread area (especially in the south). Some people even get hives. Half never remember seeing a rash at all. Tick bites are sometimes mistaken for spider bites.
It is impossible to determine whether someone has Lyme immediately after a tick bite, unless a rash consistent with Lyme shows up. Antibodies don't show up on blood tests for 4-6 weeks. While a doctor can be confident that someone has Lyme (with a rash), there is no possible way to be sure someone does NOT have Lyme shortly after a bite. Despite the controversies over Lyme, that is one fact that is not disputed. I am surprised a doctor made such a determination for you.
Doxy is the right treatment for a bite, but you need 3-4 weeks of about 400-500mg a day. Unfortunately, the prednisone suppresses the immune system, practically ensuring that the Doxy wouldn't do the job.
Lyme can also cause jaw pain and dental pain. See you on the Lyme Forum!
It is impossible to determine whether someone has Lyme immediately after a tick bite, unless a rash consistent with Lyme shows up. Antibodies don't show up on blood tests for 4-6 weeks. While a doctor can be confident that someone has Lyme (with a rash), there is no possible way to be sure someone does NOT have Lyme shortly after a bite. Despite the controversies over Lyme, that is one fact that is not disputed. I am surprised a doctor made such a determination for you.
Doxy is the right treatment for a bite, but you need 3-4 weeks of about 400-500mg a day. Unfortunately, the prednisone suppresses the immune system, practically ensuring that the Doxy wouldn't do the job.
Lyme can also cause jaw pain and dental pain. See you on the Lyme Forum!
Thank you, Shell. It is becoming very difficult to even make it to work, much less be productive. In a sense I can see how doctors have a hard time coming up with diagnoses because there are so many symptoms that can be so many different things! Compound that with symptoms that aren't consistent with any one thing, conditions that can't be diagnosed by one conclusive test, and you get a frustrated doctor, lots of tests, more doctors, and a possible "mental" diagnosis because they can't figure out what it is.
Do you have the stabbing, aching jaw, and phantom tooth pain too? Have you been told what is causing these symptoms?
Thank you,
Minnie
Do you have the stabbing, aching jaw, and phantom tooth pain too? Have you been told what is causing these symptoms?
Thank you,
Minnie
Hi Lilminni,
Seems the right side of your c-spine sounds like my left.
Many of the problems you mention can be directly caused by your neck, while others may not. I would go to a good neurosurgeon, to know exactly what is caused by the neck and what needs additional attending to.
I so feel for you - so much pain. I know for certain you walk around with a degree of it every day of your life, but when it's bad, it's really bad. Very hard to live like that. No rest, no good position to sit. All very much contributors to complete body exhaust, poor posture due to the pain, brain lapses due to the lack of real rest......uhg.
I do hope you get the right help, to the bottom of it.
-Shell
Seems the right side of your c-spine sounds like my left.
Many of the problems you mention can be directly caused by your neck, while others may not. I would go to a good neurosurgeon, to know exactly what is caused by the neck and what needs additional attending to.
I so feel for you - so much pain. I know for certain you walk around with a degree of it every day of your life, but when it's bad, it's really bad. Very hard to live like that. No rest, no good position to sit. All very much contributors to complete body exhaust, poor posture due to the pain, brain lapses due to the lack of real rest......uhg.
I do hope you get the right help, to the bottom of it.
-Shell
Actually I do have some questions about Lyme, so I will come over there. Thanks for the invite! I was hospitalized in May, 2006, due to what was diagnosed as an allergic reaction to a tick bite. I had a rash and fever and ached all over (not to mention the itching!!), so DH took me to the ER. They immediately took me back and I was soon admitted. They ran a bunch of tests, and a CDC doctor examined me. The bite was on my shoulder. There was no tick, I had no idea what had bitten me--thought it may have been a spider. I have had many tick bites in my life and never a reaction to any of them, so I was a bit puzzled about the allergic reaction diagnosis. I was released a day and a half later with prescriptions for Doxycycline, Prednisone, Triamcinolone ointment, and Lortab 5/500. The CDC doctor specifically told me I did not have Lyme's. However, it appears that perhaps I had an undiagnosed case. I will ask this question here, and then over there--do Lyme symptoms come and go, like flare-ups?
I may have multiple issues going on which definitely complicates things. Twice now I have had the "freezing" or "momentary paralysis" (the latest being on Sunday). I also had a horrifying experience later that evening. Was laying down and suddenly, out of nowhere, it felt as though I were being stabbed in the right side of the base of my skull. I honestly thought I was dying. I couldn't move to call out to DH, and I don't mean to sound dramatic, but I had tears streaming down my face, mentally saying goodbye to my family because I just knew I was leaving this world, the pain was so intense. It felt as though someone were repeatedly stabbing me with a knife back there. I almost went to the ER on that one, but didn't because once the episode was over, I saw no point. I have also been awakened on two occasions in the night where all of the teeth (upper and lower) on my right side were throbbing, and there was awful pain in the jaw area under my right ear. Not wanting to solely depend on Dr. Google, but those symptoms sound like Occiptal Neuralgia.
Yes, I have a feeling it is going to be quite a challenge for the doctors to figure out what is wrong with me.
Thanks for your helpful reply and see you in the Lyme forum,
Minnie
I may have multiple issues going on which definitely complicates things. Twice now I have had the "freezing" or "momentary paralysis" (the latest being on Sunday). I also had a horrifying experience later that evening. Was laying down and suddenly, out of nowhere, it felt as though I were being stabbed in the right side of the base of my skull. I honestly thought I was dying. I couldn't move to call out to DH, and I don't mean to sound dramatic, but I had tears streaming down my face, mentally saying goodbye to my family because I just knew I was leaving this world, the pain was so intense. It felt as though someone were repeatedly stabbing me with a knife back there. I almost went to the ER on that one, but didn't because once the episode was over, I saw no point. I have also been awakened on two occasions in the night where all of the teeth (upper and lower) on my right side were throbbing, and there was awful pain in the jaw area under my right ear. Not wanting to solely depend on Dr. Google, but those symptoms sound like Occiptal Neuralgia.
Yes, I have a feeling it is going to be quite a challenge for the doctors to figure out what is wrong with me.
Thanks for your helpful reply and see you in the Lyme forum,
Minnie
Please make sure that you ask for a Western Blot, an antibody test for Lyme Disease. Everything you describe could be caused by Lyme. Ithas a ridiculously long list of symptoms that it can cause, and it mimics many other diseases and disorders. Mine mimiced MS. I had many of the symptoms you describe.
Note: A negative blood test does not exclude Lyme Disease. Between 30-50% of Lyme patients test false negative on blood tests.
You are welcome to post on the Lyme Forum to get others' thoughts.
Note: A negative blood test does not exclude Lyme Disease. Between 30-50% of Lyme patients test false negative on blood tests.
You are welcome to post on the Lyme Forum to get others' thoughts.
I am new to this forum thing and wanted you to know that I consider all of your answers as "best answers." I want to thank everyone for responding and messaging me. Regardless of what I end up being diagnosed with, it is very comforting knowing there are complete strangers who are willing to take the time to reply. I will continue to read and lurk here and let you all know how things go with my PMD.
Hugs and prayers,
Minnie
Hugs and prayers,
Minnie
Hi Terri,
I have had a couple of MRIs done on my neck, but nothing of the brain.
I am discovering that diagnosis is very complex unless one is a "textbook" case, and at this point I'm not even sure exactly what that means. From what I understand, apparently lesions are supposed to be in the areas that are associated with the symptoms, yet I have also learned that there is so much we don't know about the brain and that a person can have MS and not have the lesions in those areas, but somewhere else, and even some don't have any visible lesions at all. Also, I have read that the Tesla 3 is better at detecting the lesions, yet the 1.5 is the one most commonly used, so it is possible that there are lesions that just aren't picked up. I will have to find out what type of MRI machine will be used when I get one.
I am leaning toward thinking I have MS the more I research, yet I realize there are mimics out there, so I guess they will have to rule out the other stuff first. And who knows, maybe I will have one of those other things. In many cases it appears it is more like a process of elimination than anything else. It has reached the point where now I need to at least begin the quest of finding out what it is, MS or not, Merely reporting the symptoms is only the beginning. I, too, may be one of those people who befuddles the doctors or doesn't fit any mold, and have to go through lots of tests and wait years before I am diagnosed. If ever.
Ah well, as they say, One day at a time.
Thank you,
Minnie
I have had a couple of MRIs done on my neck, but nothing of the brain.
I am discovering that diagnosis is very complex unless one is a "textbook" case, and at this point I'm not even sure exactly what that means. From what I understand, apparently lesions are supposed to be in the areas that are associated with the symptoms, yet I have also learned that there is so much we don't know about the brain and that a person can have MS and not have the lesions in those areas, but somewhere else, and even some don't have any visible lesions at all. Also, I have read that the Tesla 3 is better at detecting the lesions, yet the 1.5 is the one most commonly used, so it is possible that there are lesions that just aren't picked up. I will have to find out what type of MRI machine will be used when I get one.
I am leaning toward thinking I have MS the more I research, yet I realize there are mimics out there, so I guess they will have to rule out the other stuff first. And who knows, maybe I will have one of those other things. In many cases it appears it is more like a process of elimination than anything else. It has reached the point where now I need to at least begin the quest of finding out what it is, MS or not, Merely reporting the symptoms is only the beginning. I, too, may be one of those people who befuddles the doctors or doesn't fit any mold, and have to go through lots of tests and wait years before I am diagnosed. If ever.
Ah well, as they say, One day at a time.
Thank you,
Minnie
Hi,
I am sorry to hear of your neurological problems.
I agree with Lulu (she is very knowledgeable). I think you need to make another appointment with your neurologist. I do not know if you have had a brain MRI or not, but sometimes even those are not conclusive.
I understand that you do have cervical spine problems, but some of the symptoms you describe sound more (brain/neurological in etiology).
Just as an example, I myself have been still awaiting my MS diagnosis. Per my neurologist, it can take sometimes over 10 years for some to be diagnosed and I am that example, for sure.
Best of luck....
terri
I am sorry to hear of your neurological problems.
I agree with Lulu (she is very knowledgeable). I think you need to make another appointment with your neurologist. I do not know if you have had a brain MRI or not, but sometimes even those are not conclusive.
I understand that you do have cervical spine problems, but some of the symptoms you describe sound more (brain/neurological in etiology).
Just as an example, I myself have been still awaiting my MS diagnosis. Per my neurologist, it can take sometimes over 10 years for some to be diagnosed and I am that example, for sure.
Best of luck....
terri
Ugh, your PCP sounds like mine. I mean, even if they can't figure it out, they should at least refer you. It took me over two years to get a referral from him for my neck stuff. According to him, my problem was "stress." I am not even going to tell him, I am going to talk to my PMD when I go back next month.
I am glad that you finally were diagnosed (not glad that you have MS, glad you have answers and can now deal with it) and it is encouraging that you were diagnosed without a spinal tap. I consider myself a pretty tough person but those things scare me to death!
Thank you for replying,
Minnie
I am glad that you finally were diagnosed (not glad that you have MS, glad you have answers and can now deal with it) and it is encouraging that you were diagnosed without a spinal tap. I consider myself a pretty tough person but those things scare me to death!
Thank you for replying,
Minnie
I have MANY of the same symptoms you do. My PCP blew me off and told me to "get a job" so I didn't focus on my symptoms. I felt so low that I was afraid to talk to anyone else about what was going on. I found another doctor, but was still nervous about talking to her about it. Six years later I had a flair that was impossible to ignore. Looking back, I wish I would have said something because I am left with symptoms that may very well be permanent. I met enough of the criteria that I only had an MRI following MS protocol for a positive diagnosis and not a spinal tap.
I had to laugh at #23 because I've never heard anyone else describe the tape feeling on your foot so perfectly! I can't tell you how many times I've checked my foot for tape.
Not being able to remember the names of things or enjoy my family's touch are the worst. My kids are all very touchy and sometimes it just hurts. It's hard when they touch my left side and I have to ask them to move to the right.
You have a good list of symptoms, so don't let fear stop you from seeking help. If your PCP won't listen, find a new one.
Best wishes and keep us informed!!
Chris
I had to laugh at #23 because I've never heard anyone else describe the tape feeling on your foot so perfectly! I can't tell you how many times I've checked my foot for tape.
Not being able to remember the names of things or enjoy my family's touch are the worst. My kids are all very touchy and sometimes it just hurts. It's hard when they touch my left side and I have to ask them to move to the right.
You have a good list of symptoms, so don't let fear stop you from seeking help. If your PCP won't listen, find a new one.
Best wishes and keep us informed!!
Chris
Hi Gio,
Lol, I just called them amoebas because they remind me of looking at things through a microscope in biology class, but yes, those would be the floaters. The amoebas are different from the blurring. They just drift along, sometimes floating back and forth, other times floating from one side of my vision to the other, and sometimes they move in an up-and-down yet side-to-side pattern, kind of like the little blip in the old Atari "Pong"game. They are small. I will have periods of time when I get them a lot, then they just go away for a while.
The blurriness happens, for example, if I am reading and momentarily the words get fuzzy, or sometimes I will see two of the same line of text, or the same letters next to each other. Then, it rights itself after a few seconds.
Overall, I have been experiencing the flashes and blurries more often than the amoebas,
Lol, I just called them amoebas because they remind me of looking at things through a microscope in biology class, but yes, those would be the floaters. The amoebas are different from the blurring. They just drift along, sometimes floating back and forth, other times floating from one side of my vision to the other, and sometimes they move in an up-and-down yet side-to-side pattern, kind of like the little blip in the old Atari "Pong"game. They are small. I will have periods of time when I get them a lot, then they just go away for a while.
The blurriness happens, for example, if I am reading and momentarily the words get fuzzy, or sometimes I will see two of the same line of text, or the same letters next to each other. Then, it rights itself after a few seconds.
Overall, I have been experiencing the flashes and blurries more often than the amoebas,
alternative and more common terms for "amoebas" could be floaters, spots, flashers, flashes.
flashers in eyes sound more like neurological, floaters and spots can be due to eye-related issues.
flashers in eyes sound more like neurological, floaters and spots can be due to eye-related issues.
I would say all of those symptoms become more pronounced in the last year. Up until then, I would have isolated incidents that I would just shrug off. The clumsiness in particular is my longest lasting symptom, and I really don't know exactly when it started, but it has worsened in the last year, and now it is the worst it has ever been. The short-term memory started getting more noticeable about a couple of years ago and has gotten progressively worse and I have had a lot of those "blank" moments or fumbling for the right word moments in the last three or four months. In terms of vision, would notice little things here and there, like blurring or amoebas (what I call them) in my eye, or a flashing in my peripheral vision like the headlights of a car pulling into the driveway at night. These would last a while and then just go away. I have been noticing the blurring and eye-tiredness more in the last month.
well 46 year old is not meant to have memory issues or clumsiness. you figure our President of the Republic will turn 87 this year.
when exactly did these symptoms begin?
clumsiness
lack of short term memory and difficulty to concentrate
blurred vision
when exactly did these symptoms begin?
clumsiness
lack of short term memory and difficulty to concentrate
blurred vision
Hi Gio,
Are you referring to the flu shot? If so, I haven't had one.
I believe deep down I know something isn't right and hasn't been for a while. In a joking way, my DH calls me Grace, and it doesn't refer to my Godliness ;) I have developed a reputation for being clumsy, and somehow I manage to bump into doorknobs a lot (I guess my hips are at the right height and I end up with bruises on them all the time). I joke a lot about getting old and forgetting things, trying to make light of it. In reality I don't consider 46 as old at all! Of course, when I was in my twenties I thought the forties were ancient. I suppose it is all relative.
Thank you for answering my posts and talking to me. I appreciate yours and everyone's responses and suggestions.
Minnie
Are you referring to the flu shot? If so, I haven't had one.
I believe deep down I know something isn't right and hasn't been for a while. In a joking way, my DH calls me Grace, and it doesn't refer to my Godliness ;) I have developed a reputation for being clumsy, and somehow I manage to bump into doorknobs a lot (I guess my hips are at the right height and I end up with bruises on them all the time). I joke a lot about getting old and forgetting things, trying to make light of it. In reality I don't consider 46 as old at all! Of course, when I was in my twenties I thought the forties were ancient. I suppose it is all relative.
Thank you for answering my posts and talking to me. I appreciate yours and everyone's responses and suggestions.
Minnie
Positive Romberg's test happens in different conditions that cause problems in the dorsal spinal cord or the brain.
B12 deficiency or problems in the spinal cord.
There aren't signs in you of severe B12 deficiency and the orthopedic problem your Neurologist diagnosed is not enough to explain the majority of your symptoms if not all.
As you know I'm not a Doc. but in my opinion the only way to explain all the symptoms 1-26 and positive Romberg's is some auto-immune syndrome, reaction!
I think you're right about spinal tap it isn't necessary so far. It is a crucial test I think only in case of direct infections of the central nervous system. In case of auto-immune it doesn't give definitive answers.
Last question, I believe: by chance were you given the vaccine shot recently and when?
B12 deficiency or problems in the spinal cord.
There aren't signs in you of severe B12 deficiency and the orthopedic problem your Neurologist diagnosed is not enough to explain the majority of your symptoms if not all.
As you know I'm not a Doc. but in my opinion the only way to explain all the symptoms 1-26 and positive Romberg's is some auto-immune syndrome, reaction!
I think you're right about spinal tap it isn't necessary so far. It is a crucial test I think only in case of direct infections of the central nervous system. In case of auto-immune it doesn't give definitive answers.
Last question, I believe: by chance were you given the vaccine shot recently and when?
Lulu, I understand what you mean about telling your husband not to touch you! My poor DH was offended at first when this started happening because he thought I was recoiling from his touch. I had to explain that it is a reflex type thing and has nothing to do with my not wanting him to touch me. Not that I am wanting anyone to go through this, yet it is a bit reassuring to know that I'm not the only one who has had this happen.
Deb, shows how slow I am at posting from my phone, haha! Your post wasn't there when I began. I have copied and pasted my original post into a Word document and will add information as needed. Thank you very much for replying and I will definitely be on here reading and learning and keep everyone updated.
Thanks again,
Minnie
Thanks again,
Minnie
Hi, Lulu, I initially saw a neurologist who is with the spine and neuromuscular center back when I was diagnosed with the degenerating vertebrae, compressed disc and calcification in my neck. My PMD knows I am serious about following instructions regarding my treatment and I get along with her very well, so I don't know why I am so nervous about bringing up my symptoms. I guess part of it is because of how my PCP acted a few years ago. I am not even going to bother seeing him about it. Come to think about it, I don't know why he is even still my PCP. I guess because I only go to him if I am sick, and I don't get sick very often.
By reading here on this forum, I have learned that it is a good idea to document symptoms so I will have facts and timelines to present. I have had symptoms in the past but never really tracked them.
I guess a part of me is terrified that once I mention what has been going on, the wheels will be in motion. I don't mind MRIs much, yet the thought of a spinal tap scares the heck out of me. I have read that it is possible to get a diagnosis one way or another without one. Funny, I recall when I was expecting my now 26 year old daughter, I was more afraid of the IV than the actual labor (I had both of my children naturally). From what I've read on spinal taps, I would almost rather go through childbirth again! ;)
Wow, I am so glad I found you all. You are amazing and kind and I so appreciate it!
Minnie
By reading here on this forum, I have learned that it is a good idea to document symptoms so I will have facts and timelines to present. I have had symptoms in the past but never really tracked them.
I guess a part of me is terrified that once I mention what has been going on, the wheels will be in motion. I don't mind MRIs much, yet the thought of a spinal tap scares the heck out of me. I have read that it is possible to get a diagnosis one way or another without one. Funny, I recall when I was expecting my now 26 year old daughter, I was more afraid of the IV than the actual labor (I had both of my children naturally). From what I've read on spinal taps, I would almost rather go through childbirth again! ;)
Wow, I am so glad I found you all. You are amazing and kind and I so appreciate it!
Minnie
Hi Minnie,
I totally agree with Lulu. You definately should see a neurologist. You have already done the hard work of clearly detailing all of you symptoms. I would show the doctor this comprehensive list.
I wish you the best of luck. Keep us updated on how things turn out.
Good luck,
Deb
I totally agree with Lulu. You definately should see a neurologist. You have already done the hard work of clearly detailing all of you symptoms. I would show the doctor this comprehensive list.
I wish you the best of luck. Keep us updated on how things turn out.
Good luck,
Deb
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in the past few months I have been having almost all of your symptoms including the memory and concentration issues. For me I think it was some sort of "auto-immune" reaction that followed to an infection maybe viral, probably in September. I had no eye symptoms, not much balance issues, but the rest is all there including weak bladder.
The coordination problems you have when you walk I think is called Ataxia.
The strange sensations on your skin like electric and similar are called Paresthesia.
20. you say you are weak rather than debilitated that is probably due to a Myasthenic syndrome, the muscles aren't 100%.
26. don't know what that is, sounds like a MS specific symptom I read called "MS hug"
22. Bladder doesn't empty completely. This is sometimes due to infections or neurological problems
"Micturition Reflexes
Normal urination is completely dependent on neural pathways in the central nervous system. These pathways perform 3 major functions: amplification, coordination, and timing."
9. blurred vision and pain in the eyes that is probably due to something affecting the optical nerves. Ask someone to test you for the Romberg's test, look it up on Youtube to see how it's done, it's related with eye symptoms and auto-immune diseases.
Did you have blood tests recently?
was there anything out of range?
you should do Complete Blood Count, liver function and ESR at least for now then eventually see a Neurologist probably they'll have you do MRI Brain/Spine.