shokrokmom
06-30-2003, 05:57 PM
Hello all,
I have a post on the Fibromyalgia board, someone suggested that I put a post here to see if anyone had any suggestions. Last week, I was diagnosed with Fibro, I do not agree.
My pain started 5 years ago in my legs only, I just woke up one morning, feeling fine when I went to bed the night before, and my hubby had to pull me out of bed, I could not get up because my legs were extremely painful. Over the past 5 years the pain has spread to my arms, hands, back and neck. I have muscle spasms in my legs and arms. I also have IBS(Irritable Bowel Syndrome) and Trigeminal Neuralgia. My eyes twitch alot. I also have urinary problems, urgency to go but have to strain to start a strem, sometimes I have to strain through the entire urinary process or the stream will stop. I just went to Indianapolis to the IU Medical Center, living 100 miles away it was a nightmare of a trip.
I spent a total of 10 minutes in a neurologists office(a 200 mile trip for a whole 10 minutes)!
I had an MRI of the NECK 3 years ago(I had asked for an MRI of the brain and this is what I got) and that is what they wanted me to bring with me.
Last year, I had some blood work done and I came back with a positive rheumatoid factor, abnormal ASO screen, and abnormal(high) CRP. This neurologist I seen in Indianapolis tapped on my back, listened to my heart, looked at my MRI from 3 yrs ago and said I have Fibro. I have NO trigger point tenderness, and all these abnormal blood tests. I asked her if she should run some more tests and she said she didn't feel it was neccessary, then sent me on my way. Whatever my affliction may be, it is crippling me. I can no longer write, I have to type everything, most of the time I can barely walk and I fall down alot(my legs just give out on me) and I run into things(chairs, desk, walls) I don't know what else it could be, but I do not think it is fibro. My doc has discussed MS and Lupus with me, but doesn't seem to be going in the right direction for testing. A few different docs have tested my thyroid, normal, of course, but they all say that it is enlarged, then they leave it at that.
The last thing the neurologist said before leaving the room, is that she was going to send a letter to my doctor saying I need to go to a psychiatrist for depression and get on more meds. I said to her "If you had been sick for 5 years and everyone telling you they didn't know why and not really doing alot to find out, wouldn't you get a little depressed too?" she just looked at me, told me to have a good day and left.
I am so angry, I am going to send her a letter. I feel as though I wasted my time, and hers.
Any and all feedback will be welcomed and appreciated.
Thanks all,
Michelle
P.S.
I have had a lot of trouble walking for the last couple of days, feels like lead weights on my feet.
------------------
"I am too damn young to be this old"
Michelle Age 36
I have a post on the Fibromyalgia board, someone suggested that I put a post here to see if anyone had any suggestions. Last week, I was diagnosed with Fibro, I do not agree.
My pain started 5 years ago in my legs only, I just woke up one morning, feeling fine when I went to bed the night before, and my hubby had to pull me out of bed, I could not get up because my legs were extremely painful. Over the past 5 years the pain has spread to my arms, hands, back and neck. I have muscle spasms in my legs and arms. I also have IBS(Irritable Bowel Syndrome) and Trigeminal Neuralgia. My eyes twitch alot. I also have urinary problems, urgency to go but have to strain to start a strem, sometimes I have to strain through the entire urinary process or the stream will stop. I just went to Indianapolis to the IU Medical Center, living 100 miles away it was a nightmare of a trip.
I spent a total of 10 minutes in a neurologists office(a 200 mile trip for a whole 10 minutes)!
I had an MRI of the NECK 3 years ago(I had asked for an MRI of the brain and this is what I got) and that is what they wanted me to bring with me.
Last year, I had some blood work done and I came back with a positive rheumatoid factor, abnormal ASO screen, and abnormal(high) CRP. This neurologist I seen in Indianapolis tapped on my back, listened to my heart, looked at my MRI from 3 yrs ago and said I have Fibro. I have NO trigger point tenderness, and all these abnormal blood tests. I asked her if she should run some more tests and she said she didn't feel it was neccessary, then sent me on my way. Whatever my affliction may be, it is crippling me. I can no longer write, I have to type everything, most of the time I can barely walk and I fall down alot(my legs just give out on me) and I run into things(chairs, desk, walls) I don't know what else it could be, but I do not think it is fibro. My doc has discussed MS and Lupus with me, but doesn't seem to be going in the right direction for testing. A few different docs have tested my thyroid, normal, of course, but they all say that it is enlarged, then they leave it at that.
The last thing the neurologist said before leaving the room, is that she was going to send a letter to my doctor saying I need to go to a psychiatrist for depression and get on more meds. I said to her "If you had been sick for 5 years and everyone telling you they didn't know why and not really doing alot to find out, wouldn't you get a little depressed too?" she just looked at me, told me to have a good day and left.
I am so angry, I am going to send her a letter. I feel as though I wasted my time, and hers.
Any and all feedback will be welcomed and appreciated.
Thanks all,
Michelle
P.S.
I have had a lot of trouble walking for the last couple of days, feels like lead weights on my feet.
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"I am too damn young to be this old"
Michelle Age 36
Sponsor
bgdmoore
06-30-2003, 07:58 PM
I totally understand how you feel. I too can't seem to get a diagnois. Everyone seems to think something is wrong but they don't know what and just forget it,lose weight, give her antidepression pill and send her on her way. It does sound like you might have MS but without more testing you will not know. You need to go to another neurologist for a second opion. That's what I am doing in 2 weeks.
Good luck to you.
Good luck to you.
shokrokmom
06-30-2003, 10:42 PM
bgd,
Thank you for your reply. I do, indeed, need to seek out another neurologist. I am trying to get over to the Cleveland Clinic, I was told that it is every bit as good as Mayo, which I wanted to go to but can not afford.
Good luck to you in your appointment in a couple of weeks, I hope you can get some answers.
Take care,
Michelle
------------------
"I am too damn young to be this old"
Michelle Age 36
Thank you for your reply. I do, indeed, need to seek out another neurologist. I am trying to get over to the Cleveland Clinic, I was told that it is every bit as good as Mayo, which I wanted to go to but can not afford.
Good luck to you in your appointment in a couple of weeks, I hope you can get some answers.
Take care,
Michelle
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"I am too damn young to be this old"
Michelle Age 36
Soleil11
07-12-2003, 10:53 PM
Yes, it does feel like lead weights on my feet, if this helps any, at least for me it feels this way. They also feel weak to pick up and then those darn lead weights are attached and you end up fatigued deleriously from trying to get around, but get around we must or we won't. I always wonder what other MS people say it feels like to walk, but, then, I know we are all at different stages. Just seems like some of the symptoms for how it feels to walk would be similar. Soleil
shokrokmom
07-13-2003, 02:33 AM
Soleil,
Thank you for your reply. I really appreciate it.
Glad to know I am not crazy and I am not the only one that feels this way. Of course, my doc thinks I am crazy anyway. LOL
I think I may take a poll of how other people feel when they walk. I don't know.
I find it harder to walk with shoes than without. When I am wearing shoes, it feels like my feet are even heavier and then I trip over my own feet, oh, how graceful! :) I am sure it looks very silly from afar when people see me walking and tripping, walking and tripping... etc.
Then again, I really don't care what other people think, I feel like crap all the time and don't have time for other peoples opinions of me. :)
Anyway, Thank you again for replying.
Take care,
Michelle
------------------
"I am too damn young to be this old"
Michelle Age 36
Thank you for your reply. I really appreciate it.
Glad to know I am not crazy and I am not the only one that feels this way. Of course, my doc thinks I am crazy anyway. LOL
I think I may take a poll of how other people feel when they walk. I don't know.
I find it harder to walk with shoes than without. When I am wearing shoes, it feels like my feet are even heavier and then I trip over my own feet, oh, how graceful! :) I am sure it looks very silly from afar when people see me walking and tripping, walking and tripping... etc.
Then again, I really don't care what other people think, I feel like crap all the time and don't have time for other peoples opinions of me. :)
Anyway, Thank you again for replying.
Take care,
Michelle
------------------
"I am too damn young to be this old"
Michelle Age 36
Soleil11
07-13-2003, 03:05 PM
I'm still here w/ you. Yes, it is easier to walk for me w/out shoes than with. In fact, I can hardly put normal shoes on. I stick with one pr. that I can pick my feet up in the best and drive with. I don't know about you , but I started having problems transferring the feet driving. So, I am careful about what shoes I drive in. No one else has responded about how it feels to walk, so maybe in a bit they will for you. The boards are good for advice and support. I also have the stiffness behind the knee and in the thighs and calves. Also burn if I walk too much, but walk I must.
Later, Soleil
Later, Soleil
suepie
07-13-2003, 06:39 PM
oh my!!! i thought i was the only one with the shoe thing. i also cant walk with shoes so i love summer! i had to get rid of loke 20 pair of summer shoes. i obviously love shoes! but- i replaced them with all new sandals that i wear in my wheel chair.also im always getting pedicures as im always scraping my right foot up going barefoot but hey-- thats my treat!!i had to give up driving 3 yrs ago. before that i could grab pant leg to lift foot off gas but come summer in shorts nothing to grab!! take care all and stay healthy --sue
harley
07-13-2003, 06:48 PM
Hi,
I was just reading your post and you could be describing me..
I was diagnosed with fibro and then was told I had MS.
It turned out I had Lyme Disease.
Have you been tested for Lyme???you sound just like me..
I was just reading your post and you could be describing me..
I was diagnosed with fibro and then was told I had MS.
It turned out I had Lyme Disease.
Have you been tested for Lyme???you sound just like me..
Soleil11
07-13-2003, 11:52 PM
A whole bunch of us have been tested for Lyme, like one of the 1st blood tests done on me. They sounded like they thought it would be positive, no.
I think diseases like Lyme, MS, Fibro, MS have overlapping symptoms. But, there will be some differences in the end result. Soleil
I think diseases like Lyme, MS, Fibro, MS have overlapping symptoms. But, there will be some differences in the end result. Soleil
Renee016
07-15-2003, 09:21 PM
Hi Michelle and everyone - I am 36 years old and have been having weakness and pain in my legs and lower back since last November. I also initially described it like having "lead blocks tied to my feet". Several months later it has gotten worse - now I describe it as "walking against the wind on a cold blustery day in January with a foot of snow on the ground". Standing up from a squatting position is like standing up with someone on your shoulders. Yes, I can still walk but there is this awful resistance and pain all up and down my right leg. MRI of lower back showed no reason for this pain, although I do have degenerative disc disease.
Last week I developed dizziness and now eye spasms - I go for an MRI of my head on Thursday. I know how frustrating it is to feel so lousy and not have a diagnosis. I know how it feels when you are not believed, you are told it's all in your head, you're depressed or a hypochondriac. Hang in there and keep seeing different doctors till you get a diagnosis.
Take care all,
Renee :angel:
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1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
Last week I developed dizziness and now eye spasms - I go for an MRI of my head on Thursday. I know how frustrating it is to feel so lousy and not have a diagnosis. I know how it feels when you are not believed, you are told it's all in your head, you're depressed or a hypochondriac. Hang in there and keep seeing different doctors till you get a diagnosis.
Take care all,
Renee :angel:
------------------
1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
1999 Neck problems began
2001 Cervical Kyphosis
2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
jltk
07-17-2003, 05:49 PM
Hello I know waiting for a diagnosis is tuff It took me 8 yrs and I am still not sure they have it correct. I guess MS fits my symptoms better than the other things I was told in the begining. Now I am dealing with cevical arthritis which is painful. My MS symptoms are pretty much under control. however, the summer heat is aggravating it some. I know what you mean about the lead on your feet, that was one of my first symptoms. Everything for me started after a hysterectomy the docs said it triggered MS to flare. Hope you can find a good caring doc. That is really the key. Believe me I have seen some neuros that have been quite rude but I have also seen some that relly cared. Hang in there.
Kathy from Mississippi
Kathy from Mississippi
shokrokmom
07-18-2003, 12:52 AM
Hello all,
Sorry it has taken so long to respond to your posts, but I have been feeling crappy and also dealing with an attitude filled 13 yr old son. Oh what fun! LOL
Soleil, I have become a 2 footed driver, otherwise I would wreck my car. I brake with the left and gas with the right. We have to do what we have to do to make it work.
I have been having horrible muscle spasms in my back and legs. God, it's terrible and painful. I also have muscle twitching, which is just plain annoying, not painful though.
Suepie, Sorry you had to give up driving, I would go insane if I couldn't get myself around to where I want to go. I have no friends so I would never be able to go anywhere. LOL I am also a shoe fanatic, I have about 50 pairs of shoes, I only wear 1 pair and my slippers. I have been wearing slippers more than anything, my last comfortable pair of shoes is starting to give me trouble with walking now. I get strange looks at the store with my fuzzy pink slippers. LOL
Renee, I always described the lead feeling in my legs as "Walking through quicksand or mud with lead weights tied to my ankles". I also have the irritating eye twitching, I told my doc about it and he said it was just stress and not to worry about it. I told him that if that was my only symptom, I wouldn't worry. Then I went off on him. I yelled about nobody really caring enough to want to help figure out what is wrong with me. I told him that he and other doctors make me feel like I am bugging them. I said "You only see me once a month, that's all the more you have to deal with my illness, I deal with it 24/7 and I am frustrated because nobody will help me figure it out. Then you doctors make me feel like I am bugging the s**t out of you. I don't find this to be very fair." He then told me that I need to see a psychologist. LOL Shrink my head, maybe the pain will subside. LOL j/k
Anyway, Renee, it is Thursday, did you go for MRI today? Did they say anything? When will you know? Keep us posted please.
Kathy, The summer heat bothers me greatly. They say I have Fibro and that I should be bothered by the cold and not the heat. I try to tell them that the heat bothers me alot more than the cold, but they won't listen. I am still searching for that caring doc, maybe I will find him at the pain clinic. I hope. The pain doc I am supposed to see on the 5th of August is supposed to be a very good and caring person, I really hope they are right.
OK, I have rambled on long enough, my fingers are cramping up on me and my back is spasming something fierce. Got to go.
Take care all.
Michelle
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"I am too damn young to feel this old"
Michelle Age 36
[This message has been edited by shokrokmom (edited 07-17-2003).]
Sorry it has taken so long to respond to your posts, but I have been feeling crappy and also dealing with an attitude filled 13 yr old son. Oh what fun! LOL
Soleil, I have become a 2 footed driver, otherwise I would wreck my car. I brake with the left and gas with the right. We have to do what we have to do to make it work.
I have been having horrible muscle spasms in my back and legs. God, it's terrible and painful. I also have muscle twitching, which is just plain annoying, not painful though.
Suepie, Sorry you had to give up driving, I would go insane if I couldn't get myself around to where I want to go. I have no friends so I would never be able to go anywhere. LOL I am also a shoe fanatic, I have about 50 pairs of shoes, I only wear 1 pair and my slippers. I have been wearing slippers more than anything, my last comfortable pair of shoes is starting to give me trouble with walking now. I get strange looks at the store with my fuzzy pink slippers. LOL
Renee, I always described the lead feeling in my legs as "Walking through quicksand or mud with lead weights tied to my ankles". I also have the irritating eye twitching, I told my doc about it and he said it was just stress and not to worry about it. I told him that if that was my only symptom, I wouldn't worry. Then I went off on him. I yelled about nobody really caring enough to want to help figure out what is wrong with me. I told him that he and other doctors make me feel like I am bugging them. I said "You only see me once a month, that's all the more you have to deal with my illness, I deal with it 24/7 and I am frustrated because nobody will help me figure it out. Then you doctors make me feel like I am bugging the s**t out of you. I don't find this to be very fair." He then told me that I need to see a psychologist. LOL Shrink my head, maybe the pain will subside. LOL j/k
Anyway, Renee, it is Thursday, did you go for MRI today? Did they say anything? When will you know? Keep us posted please.
Kathy, The summer heat bothers me greatly. They say I have Fibro and that I should be bothered by the cold and not the heat. I try to tell them that the heat bothers me alot more than the cold, but they won't listen. I am still searching for that caring doc, maybe I will find him at the pain clinic. I hope. The pain doc I am supposed to see on the 5th of August is supposed to be a very good and caring person, I really hope they are right.
OK, I have rambled on long enough, my fingers are cramping up on me and my back is spasming something fierce. Got to go.
Take care all.
Michelle
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"I am too damn young to feel this old"
Michelle Age 36
[This message has been edited by shokrokmom (edited 07-17-2003).]
suepie
07-18-2003, 10:11 AM
hi michelle-thought id let you know you dont live too far from me. im in mich city in. have a good friend in fort wayne i visit. is ther a ms support group near you? ive made alot of friends. needed them as my husband divorced me 2 yrs ago after 29 yrs of marriage!im 49 yrs old. the ms group is a blast. there was one in my city but i heard they were depressing so i went only a few miles away. we have people that dont know what they have yet and they just say i have "what the h--- disease"! we do alot of laughing and have speakers once a month. its a faily weve all created.sure sounds like alot of ms symptoms. good luck and keep us posted. 13 yr old attitudes can bring on the stress- been there done that too haha!!--sue
Renee016
07-19-2003, 08:43 PM
Went for my MRI of the brain and it came back normal. I should be relieved but instead I'm only more frustrated. All these tests and everything comes out normal - EMG, EEG, BAERS, SSEP. Meanwhile, I don't feel normal. I was even tested for Lyme, diabetes and thryroid dysfunction.
The only thing they found several months ago was a herniated disc in my neck, for which I had surgery in February. But I did not get better, only worse. My legs feel so weak and heavy sometimes. And I have a lot of pain in my lower back that travels down my right leg. How much pain do you get with MS? It goes all the way down to my ankle. MRI of my lumbar spine does not show any nerve compression so it does not make sense.
I don't know what to do next. I keep missing days from work because of pain and fatigue and having to see all these doctors - I don't even know how much longer I CAN work because sitting at my desk all day only aggravates things and typing on the computer seems to give me more dizzy spells. When I mention this to my husband, he flips out. He thinks this is all in my head or that I exagerate my pain. I would love to have him feel what I feel for just one d*m* day if it were ever possible.
Sorry, I'm just so frustrated and upset by all this. I've been having this since November of last year and it just gets worse and worse. Today I can bearly stand up straight with the pain and spasms in my lower back.
How long did it take you all to get diagnosed? Did you have MRI's that came out normal at first?
Renee
P.S. I have another question for the ladies - do you notice that your symptoms fluctuate some with your cycle? When its that time for me the weakness and pain are so much more unbearable - just wondering if anyone had this experience.
[This message has been edited by Renee016 (edited 07-19-2003).]
The only thing they found several months ago was a herniated disc in my neck, for which I had surgery in February. But I did not get better, only worse. My legs feel so weak and heavy sometimes. And I have a lot of pain in my lower back that travels down my right leg. How much pain do you get with MS? It goes all the way down to my ankle. MRI of my lumbar spine does not show any nerve compression so it does not make sense.
I don't know what to do next. I keep missing days from work because of pain and fatigue and having to see all these doctors - I don't even know how much longer I CAN work because sitting at my desk all day only aggravates things and typing on the computer seems to give me more dizzy spells. When I mention this to my husband, he flips out. He thinks this is all in my head or that I exagerate my pain. I would love to have him feel what I feel for just one d*m* day if it were ever possible.
Sorry, I'm just so frustrated and upset by all this. I've been having this since November of last year and it just gets worse and worse. Today I can bearly stand up straight with the pain and spasms in my lower back.
How long did it take you all to get diagnosed? Did you have MRI's that came out normal at first?
Renee
P.S. I have another question for the ladies - do you notice that your symptoms fluctuate some with your cycle? When its that time for me the weakness and pain are so much more unbearable - just wondering if anyone had this experience.
[This message has been edited by Renee016 (edited 07-19-2003).]
dolly linvil
07-22-2003, 02:04 AM
How coincidental...my symptoms started in November. I have/had: fatigue, dizziness, tingling in my face, right arm & leg, vision problems (floaters, black spots, blurred). Had an MRI to check possible clogged sinus, turned out OK. Equilibrium, hearing, vision, thyroid all OK. Spent 6 days sleeping except for about 2 hrs. each day when son woke me up to eat. The only thing that is not affected is my appetite. Symptoms quit for about 4 to 5 weeks (except for vision) then returned. This with topomax (prescribed by neurologist for seizures/migraines). Symptoms back when I went on vacation. At first I thought it was just the excitement...then when returned home thought it was from being tired because of the travel.
http://www.healthboards.com/ubb/confused.gif
http://www.healthboards.com/ubb/confused.gif