MILLSC
06-13-2006, 10:44 AM
Hi everyone..
I am SO depressed, I can't quit crying. I feel horrible. I can't sleep at night due to a feeling of stiff muscles, its like I need to constantly stretch . The fatigue is so bad, I can't even get out of bed without feeling exhausted and have to get right back in. I feel like an invalid. What is wrong with me? The neuro says "possible MS" and is taking a watch and wait approach- only 1 lesion on brain MRI and I can't get him to order a spine MRI. Meanwhile, I am going downhill...maybe its a flare because I definitely can pinpoint the day when it started. I have a terrific husband but feel so guilty that I'm physically unable to do what I should be doing. It's awful.
Last night, I also had my right thumb just start twitching while watching tv and while asleep my right arm jerked hard like I was intentionally moving it.
Can someone please tell me the symptoms related to brain lesions vs. sympyoms of spinal lesions?
I'm sure depression is not good for whatever is wrong, but likewise, neither is whatever is wrong good for depression. I feel caught in a vicious cycle- like I'm on the losing end of a fight with a pitt bull.
Sorry for the rambling, I just get overwhelmed with this emotional rollercoaster ride sometimes and know that no matter how supportive my family may be, no one will understand until it is experienced and most of you guys have been dealing with this far longer than myself. My heros :angel:
God bless!
I am SO depressed, I can't quit crying. I feel horrible. I can't sleep at night due to a feeling of stiff muscles, its like I need to constantly stretch . The fatigue is so bad, I can't even get out of bed without feeling exhausted and have to get right back in. I feel like an invalid. What is wrong with me? The neuro says "possible MS" and is taking a watch and wait approach- only 1 lesion on brain MRI and I can't get him to order a spine MRI. Meanwhile, I am going downhill...maybe its a flare because I definitely can pinpoint the day when it started. I have a terrific husband but feel so guilty that I'm physically unable to do what I should be doing. It's awful.
Last night, I also had my right thumb just start twitching while watching tv and while asleep my right arm jerked hard like I was intentionally moving it.
Can someone please tell me the symptoms related to brain lesions vs. sympyoms of spinal lesions?
I'm sure depression is not good for whatever is wrong, but likewise, neither is whatever is wrong good for depression. I feel caught in a vicious cycle- like I'm on the losing end of a fight with a pitt bull.
Sorry for the rambling, I just get overwhelmed with this emotional rollercoaster ride sometimes and know that no matter how supportive my family may be, no one will understand until it is experienced and most of you guys have been dealing with this far longer than myself. My heros :angel:
God bless!
Sponsor
StephanieAnne
06-13-2006, 12:48 PM
Hi MILLSC
I know exactly how you are feeling, because I was there. That stretching thing was always like a sign that I was relapsing, hate the stretching thing, everytime I stood up had to stretch. Have you talked to your Neuro about maybe you are having a relapse and can he prescribe anything for that? I was so in your position, you just don't know what to do, so you keep on doing what you should, work, housework, etc... and all of that is so exhausting, and because you havn't gotten a dx, stress is building up and that doesn't help and now you are at the end and all you can do it cry. Yup we have all been there one way or the other.
What about talking to your neuroconcerning how you feel and about the MRI of the spine, and bring that pit bull that you are fighting with you meaning you be the pit bull, and tell the dr what you need, you can't live like this, and so maybe you need a new neuro? I remember my neuro saying ok I'll see you in 6 weeks and I was NO I need some help NOW!! you can say that to your dr, and if they don't like it, politely ask for copy of your file and find a new neuro.
You have to take charge, do research on MS and what tests can be done to rule it out or to dx. Be an informed patient. All I can tell you is stay out of the heat, and hot showers, drink lots of water, and rest even if it is not sleep just resting will help.
I hope you feel better let us know how things go ok?
I know exactly how you are feeling, because I was there. That stretching thing was always like a sign that I was relapsing, hate the stretching thing, everytime I stood up had to stretch. Have you talked to your Neuro about maybe you are having a relapse and can he prescribe anything for that? I was so in your position, you just don't know what to do, so you keep on doing what you should, work, housework, etc... and all of that is so exhausting, and because you havn't gotten a dx, stress is building up and that doesn't help and now you are at the end and all you can do it cry. Yup we have all been there one way or the other.
What about talking to your neuroconcerning how you feel and about the MRI of the spine, and bring that pit bull that you are fighting with you meaning you be the pit bull, and tell the dr what you need, you can't live like this, and so maybe you need a new neuro? I remember my neuro saying ok I'll see you in 6 weeks and I was NO I need some help NOW!! you can say that to your dr, and if they don't like it, politely ask for copy of your file and find a new neuro.
You have to take charge, do research on MS and what tests can be done to rule it out or to dx. Be an informed patient. All I can tell you is stay out of the heat, and hot showers, drink lots of water, and rest even if it is not sleep just resting will help.
I hope you feel better let us know how things go ok?
Heddi
06-13-2006, 03:58 PM
My heart goes out to you because I have been there and felt the same way on and off throughout my bout with this illness.
I am not certain of the defiinite difference with brain lesions and spinal lesions but I have large lesions on my spine according to the doctor and that is what causes me to have issues with my legs. I feel sensations constantly and have lost the ability to walk unassisted twice.
KEEP ON KEEPING ON, THIS TOO SHALL PASS. :wave:
I am not certain of the defiinite difference with brain lesions and spinal lesions but I have large lesions on my spine according to the doctor and that is what causes me to have issues with my legs. I feel sensations constantly and have lost the ability to walk unassisted twice.
KEEP ON KEEPING ON, THIS TOO SHALL PASS. :wave:
duttin
06-13-2006, 04:44 PM
Millsc,
I can relate.its like a vicious whirl pool with out a life jacket.
You need to call your neuro and basically tell him,I have come to the conclusion these DRs work for me.Some neuro's are blind to the fact of what we go through.
It took my hubby to call and get mad.I suffer from chronic leg spasms,coming from the thoracic area.There's nothing worse than not being able to stretch those muscles.There are meds available to help.
You need to get mad,go see that neuro and fight like that pitt bull.I had to literally get mad and determined to argue with my neuro about a diagnosis.Limbo land is no help and the stress and a depressive state don't help the disease.Besides the c-spine mri,your neuro can do a lumbar puncture for step closer to a diagnosis.
I remember the days of crying.
Keep fighting
Prayers to you
Toni
I can relate.its like a vicious whirl pool with out a life jacket.
You need to call your neuro and basically tell him,I have come to the conclusion these DRs work for me.Some neuro's are blind to the fact of what we go through.
It took my hubby to call and get mad.I suffer from chronic leg spasms,coming from the thoracic area.There's nothing worse than not being able to stretch those muscles.There are meds available to help.
You need to get mad,go see that neuro and fight like that pitt bull.I had to literally get mad and determined to argue with my neuro about a diagnosis.Limbo land is no help and the stress and a depressive state don't help the disease.Besides the c-spine mri,your neuro can do a lumbar puncture for step closer to a diagnosis.
I remember the days of crying.
Keep fighting
Prayers to you
Toni
sunshine149
06-13-2006, 05:41 PM
After 9.5 years with MS, I still have my days of crying!!
Generally, it is thought that spinal lesions indicate problems with mobility (including those in the cervical spine).
Generally, it is thought that spinal lesions indicate problems with mobility (including those in the cervical spine).
MILLSC
06-13-2006, 10:28 PM
Oh guys, thanks so much...
Somedays it gets difficult to distinguish cause from effect. After several months with few symptoms, this past week has been rough and with some new things as well. Looking back, I think the back pain/spasm that ran into my hip earlier this week may have been the catalyst.
Ya'll (sorry, Southern english) ;) are so right about being aggressive with the neuro. The first neuro I saw completely overlooked the brain lesion on my MRI ! Tell me how a trained physician overlooks something so pertinent to his field of expertise?? It read " there is a 4mm well defined area of increased hyperintensity at the medial aspect of the right temporal horn; exact etiology is unknown". He said "as we get older, we have lesions in the white matter anyway". I'm 35 ! ...Needless to say, I found another neuro. This 2nd one said it is definitely consistent with a MS lesion but since it is only 1, we'll wait and see how things progress and no need for a spine MRI without obvious gait abnormalities. Until recently, I've had mostly sensory issues and muscle twitches/spasms/fasciculations.
Again, thanks so much for the support; this forum is definitely a shelter in the storm. I wish you all God speed and symptom free days !
millsc
Somedays it gets difficult to distinguish cause from effect. After several months with few symptoms, this past week has been rough and with some new things as well. Looking back, I think the back pain/spasm that ran into my hip earlier this week may have been the catalyst.
Ya'll (sorry, Southern english) ;) are so right about being aggressive with the neuro. The first neuro I saw completely overlooked the brain lesion on my MRI ! Tell me how a trained physician overlooks something so pertinent to his field of expertise?? It read " there is a 4mm well defined area of increased hyperintensity at the medial aspect of the right temporal horn; exact etiology is unknown". He said "as we get older, we have lesions in the white matter anyway". I'm 35 ! ...Needless to say, I found another neuro. This 2nd one said it is definitely consistent with a MS lesion but since it is only 1, we'll wait and see how things progress and no need for a spine MRI without obvious gait abnormalities. Until recently, I've had mostly sensory issues and muscle twitches/spasms/fasciculations.
Again, thanks so much for the support; this forum is definitely a shelter in the storm. I wish you all God speed and symptom free days !
millsc
lily1954
06-15-2006, 10:21 PM
MILLSC
Been there and felt that way. I say that we are responsble for ourselves so you will need to insist on Spinal MRI and Spinal Puncture. Now it took me a long time to be able to do this. It all seems like too much effort and I kept asking and asking (all we want to do sit or lay down). I told my my mom I wasn't strong enough to hold my head up. Anyway my neuro told me it was all in my head and to go back to my psychiatrist. I got a new neuro after building up enough strength. He said that i have a demylinating disease and have 25 lesions on my brain and he can't believe that the other neuro didn't do a spinal MRI. The old neuro said that I only had 1 lesion. New neuro said to get all of my reports to keep for my records. My husband takes me to most of my appointments, its good support for me. Now if I could get him to do the house work I'd be set. I'm sorry for rambling and I wish I could help you. Do one thing a day. Somedays I can only brush my teeth and I think thats a good thing. :D Love to all. Lily
Been there and felt that way. I say that we are responsble for ourselves so you will need to insist on Spinal MRI and Spinal Puncture. Now it took me a long time to be able to do this. It all seems like too much effort and I kept asking and asking (all we want to do sit or lay down). I told my my mom I wasn't strong enough to hold my head up. Anyway my neuro told me it was all in my head and to go back to my psychiatrist. I got a new neuro after building up enough strength. He said that i have a demylinating disease and have 25 lesions on my brain and he can't believe that the other neuro didn't do a spinal MRI. The old neuro said that I only had 1 lesion. New neuro said to get all of my reports to keep for my records. My husband takes me to most of my appointments, its good support for me. Now if I could get him to do the house work I'd be set. I'm sorry for rambling and I wish I could help you. Do one thing a day. Somedays I can only brush my teeth and I think thats a good thing. :D Love to all. Lily
Poopie123
06-25-2006, 08:57 PM
MILLSC.....
I wanted to reply to your post sooner, but I've been going through a whopper of an exacerbation. It's taking forever to clear up, even though I did the IV and oral steroids. I have been crying nonstop for the past 4 weeks and I don't think the steroids have helped. I just started Lexapro for depression so I'm hoping for the best. I hate taking medications, but I pick my battles and the depression is high on my list of enemies right now. Good luck to you.
P.S. I am also 35 and wonder how I got this way.
I wanted to reply to your post sooner, but I've been going through a whopper of an exacerbation. It's taking forever to clear up, even though I did the IV and oral steroids. I have been crying nonstop for the past 4 weeks and I don't think the steroids have helped. I just started Lexapro for depression so I'm hoping for the best. I hate taking medications, but I pick my battles and the depression is high on my list of enemies right now. Good luck to you.
P.S. I am also 35 and wonder how I got this way.
AussieTam
06-25-2006, 09:05 PM
Millsc ... I'm not yet dx with anything, but I can totally relate to the way you feel when your symptoms get the better of you! I hope that having others around who understand takes at least some of the burden away from you. Hugs.
I am surprised your neuro missed something so large! Sure is scary that a specialist could do that. I hope you do much better with your new neuro.
Poopie ... I'm 24 and many times I have wondered why I feel like I'm 84! Well my body does anyway, my mind is another matter! ;)
Tam :)
I am surprised your neuro missed something so large! Sure is scary that a specialist could do that. I hope you do much better with your new neuro.
Poopie ... I'm 24 and many times I have wondered why I feel like I'm 84! Well my body does anyway, my mind is another matter! ;)
Tam :)
Kymtnms
06-26-2006, 08:36 AM
It's a long, tiring, frustration roller coaster! Seems some people go right in, get a diagnosis, start their medication and go on with life, then there are so many others that have to fight for ours!
Go to your Neuro or find a new one and DEMAND a spinal tap. That's what got my diagnosis and finally got me a referral to a MS Clinic. I told my GP if she would give me a referral to a new neuro I promised I would never bother her again with what she laughingly called "little things that bother everyone when they start getting older". When finally getting in to see the neuro I took a typed out, 3 page list of my symptoms in the order they started with an estimated date and what doctor/specialist I had seen, if any, and what they did, as in tests or treatment, if any, and all previous test results I could get my hands on then as nice as I could, demanded a spinal tap to rule out MS since all my MRI's came back clear. He agreed with me after seeing the typed out list that something is definitely wrong and tried to schedule the spinal tap for that day but he was booked so did it the very next week. Even as he was doing the spinal tap he kept telling me everything looked fine as in the color of the fluid and the pressure, like he was saying this is silly and a waste of time, but AAHH! it came back with "2 well defined bands indicative of multiple sclerosis". He was completely surprised so decided to do Evoked Potentials to find my VEP was abnormal which is another sign. My last phone conversation with him was to start thinking about which MS medication I wanted to go with and his receptionist would be calling with an appointment to the MS Clinic. Finally taking charge of my own diagnosis was the only way to get things moving after going round and round with doctors/specialists for almost 2 years.
Many of these doctors think if you don't look like your in terrible pain or have very visual signs when you walk through their door you are OK so they dismiss you. After getting copies of reports from many of the doctors I had seen I started seeing a pattern that each doctor had written "She is a 42 yr old female patient showing no signs of immediate distress." None of those doctors bothered to listen or notice my immediate distress even on the days I could barely walk into their office. One doctor had written no problem on the tests he performs in the office even though he had to catch me from falling on 2 of them!
Take charge and hang in there!
Go to your Neuro or find a new one and DEMAND a spinal tap. That's what got my diagnosis and finally got me a referral to a MS Clinic. I told my GP if she would give me a referral to a new neuro I promised I would never bother her again with what she laughingly called "little things that bother everyone when they start getting older". When finally getting in to see the neuro I took a typed out, 3 page list of my symptoms in the order they started with an estimated date and what doctor/specialist I had seen, if any, and what they did, as in tests or treatment, if any, and all previous test results I could get my hands on then as nice as I could, demanded a spinal tap to rule out MS since all my MRI's came back clear. He agreed with me after seeing the typed out list that something is definitely wrong and tried to schedule the spinal tap for that day but he was booked so did it the very next week. Even as he was doing the spinal tap he kept telling me everything looked fine as in the color of the fluid and the pressure, like he was saying this is silly and a waste of time, but AAHH! it came back with "2 well defined bands indicative of multiple sclerosis". He was completely surprised so decided to do Evoked Potentials to find my VEP was abnormal which is another sign. My last phone conversation with him was to start thinking about which MS medication I wanted to go with and his receptionist would be calling with an appointment to the MS Clinic. Finally taking charge of my own diagnosis was the only way to get things moving after going round and round with doctors/specialists for almost 2 years.
Many of these doctors think if you don't look like your in terrible pain or have very visual signs when you walk through their door you are OK so they dismiss you. After getting copies of reports from many of the doctors I had seen I started seeing a pattern that each doctor had written "She is a 42 yr old female patient showing no signs of immediate distress." None of those doctors bothered to listen or notice my immediate distress even on the days I could barely walk into their office. One doctor had written no problem on the tests he performs in the office even though he had to catch me from falling on 2 of them!
Take charge and hang in there!
MILLSC
06-27-2006, 11:06 AM
Hi Guys..
Sorry I haven't responded, but have been on vacation. I truly know that something isn't right as I tired very easily while vacationing and did not feel like shopping! My husband is both glad and frightened at the same time, lol. I did develop a tremor in my right hand that feels like it starts in my shoulder, like a pressure. I went to my PCP who says that its time for a "fresh look" by a new neuro, so he made an appt. for me. WELL- the new neuro's office called and said that since I've had a workup last year by another neuro, he would treat me only as a second opinion with a 1 time visit and no workup:confused: :mad: What good is that?
Arrghhh!
Cindy
Sorry I haven't responded, but have been on vacation. I truly know that something isn't right as I tired very easily while vacationing and did not feel like shopping! My husband is both glad and frightened at the same time, lol. I did develop a tremor in my right hand that feels like it starts in my shoulder, like a pressure. I went to my PCP who says that its time for a "fresh look" by a new neuro, so he made an appt. for me. WELL- the new neuro's office called and said that since I've had a workup last year by another neuro, he would treat me only as a second opinion with a 1 time visit and no workup:confused: :mad: What good is that?
Arrghhh!
Cindy
duttin
06-27-2006, 04:05 PM
Cindy,
I hope you had a great vacation a little R and R does the body good.It's good that you are seeing a new neuro,he might change his mind once you have your appointment.
I have been to a host of Drs, neurologist,neurosurgeons,neuromuscular and a electromuscular.The neurologist that I am with now I was seen on an emergency basis as a second opinion of my neurosurgeon whos medical opinion I value greatly.He sent me there thinking I was have a muscular disorder honestly he was thinking ALS,this neurologist ruled it out after sending me to the cleveland clinic for multiple test and blood work, a scary and trying time for my family and I. I recently had a 6 month update appointment with him,he originally stated it was to go over paper work and reveiw all test.He scheduled new test,MRI's and he sent them away to be read by a neuro-radiologist and they were conclusive for MS.he wouldn't of done that but from the last MRI's done by a neuro that was a complete idiot,I had new symptoms that had appeared.
If you have had any new symptoms write them all down.Every neuro is different and during this appointment he should do all the standard reflex test.
have you had any evoked potentals done,these help when MRI's are negative.
Cindy be very blunt with this Dr,take charge and be your own advocate,sometimes this is the only way they here you.
Toni
I hope you had a great vacation a little R and R does the body good.It's good that you are seeing a new neuro,he might change his mind once you have your appointment.
I have been to a host of Drs, neurologist,neurosurgeons,neuromuscular and a electromuscular.The neurologist that I am with now I was seen on an emergency basis as a second opinion of my neurosurgeon whos medical opinion I value greatly.He sent me there thinking I was have a muscular disorder honestly he was thinking ALS,this neurologist ruled it out after sending me to the cleveland clinic for multiple test and blood work, a scary and trying time for my family and I. I recently had a 6 month update appointment with him,he originally stated it was to go over paper work and reveiw all test.He scheduled new test,MRI's and he sent them away to be read by a neuro-radiologist and they were conclusive for MS.he wouldn't of done that but from the last MRI's done by a neuro that was a complete idiot,I had new symptoms that had appeared.
If you have had any new symptoms write them all down.Every neuro is different and during this appointment he should do all the standard reflex test.
have you had any evoked potentals done,these help when MRI's are negative.
Cindy be very blunt with this Dr,take charge and be your own advocate,sometimes this is the only way they here you.
Toni