Missjay1977
06-16-2008, 05:06 PM
Hi everyone, my name is Jaime and I usually hang out around the Fibromyalgia boards (dx last month). I have a long list of symptoms that have gone unexplained despite numerous testing and finally the dx I recieved is Fibromyalgia. With no disrespect to anyone that suffers from Fibromyalgia, it seems to me that there may be something else wrong (with me anyway). Here is my story:
Summer of 2006, started noticing facial numbness, always on left side, accompanied with left arm and leg weakness. Every once in a while it would happen on the right side. Complained to my GP for about 6 months. He referred me to a rehabilitation doc (don't ask me why).
Dec 2006/Jan 2007, Rehab doc orders MRI of brain (no contrast, am allergic) and am emg (of arms, he didn't use needles, just a metal intstument). MRI of brain normal, EMG finding, carpal tunnel in both arms. Rehab doc notes "a slight weakness in left arm" thru his examination.
Jan 2007 Rehab doc refers me to a neurologist. (during this time I have started to develop an insane tremmor in my left arm)
Feb 2007 Neurologist orders Cspine MRI (normal), Evoked potentials (eyes and auditory normal) Sensory had a slight delay. Neurologist also sent me to an Opthalmologist (sp?), find out I have elevated optic nerves (not inflamed), apparently there is a differece? (I have had 2 episodes of losing vision in one eye, they told me it was occular migraine, also have a blind spot in left eye, although vision field test was normal, also see spots, colors almost every day. Neuro also orders TONS of blood work, all neg (no lupus, no lyme, everything was normal except elevated sed rate of 29. I am 30 so it should be under 20. Neuro says I'm fine, offers me Lexapro and refers me to a phychiatrist (he thought I was crazy apparently).
Time goes by, have developed muscle twitches/fasiculation ALL OVER, all the time. Have always had to some extent but it really gets rediculious. Still coming to see my GP on a semi regular basis. Still have tremor and weakness in left arm sometimes in legs also.
March 2008, bronchitis and horrible pain on right side of chest, between breast and arm pit, told it's pluerisy. Still there for 3 weeks. Get a chest xray, normal. About 4 weeks later Gp sends me to a Rhuematologist, she orders tons of blood work, all normal but tells me I have a Fibromyalgia.
Follow up with GP. He wants me to go to another neurologist, still concerned about arm weakness and tremor. Not so much about the fasiculations. Does this sound like it could be ms or am I way off base?
I also want to tell you that since I was about 19 sometimes when I am in the act of getting into my car, both of my legs will go numb. Also have (dont know how to describe it) you know when your hand falls asleep, that feeling, I get that on my head and face and on my side sometimes except on my side it's extremly painful.
Any advice or input would be GREATLY APPRECIATED. Thank you so much for your time.
Jaime
Summer of 2006, started noticing facial numbness, always on left side, accompanied with left arm and leg weakness. Every once in a while it would happen on the right side. Complained to my GP for about 6 months. He referred me to a rehabilitation doc (don't ask me why).
Dec 2006/Jan 2007, Rehab doc orders MRI of brain (no contrast, am allergic) and am emg (of arms, he didn't use needles, just a metal intstument). MRI of brain normal, EMG finding, carpal tunnel in both arms. Rehab doc notes "a slight weakness in left arm" thru his examination.
Jan 2007 Rehab doc refers me to a neurologist. (during this time I have started to develop an insane tremmor in my left arm)
Feb 2007 Neurologist orders Cspine MRI (normal), Evoked potentials (eyes and auditory normal) Sensory had a slight delay. Neurologist also sent me to an Opthalmologist (sp?), find out I have elevated optic nerves (not inflamed), apparently there is a differece? (I have had 2 episodes of losing vision in one eye, they told me it was occular migraine, also have a blind spot in left eye, although vision field test was normal, also see spots, colors almost every day. Neuro also orders TONS of blood work, all neg (no lupus, no lyme, everything was normal except elevated sed rate of 29. I am 30 so it should be under 20. Neuro says I'm fine, offers me Lexapro and refers me to a phychiatrist (he thought I was crazy apparently).
Time goes by, have developed muscle twitches/fasiculation ALL OVER, all the time. Have always had to some extent but it really gets rediculious. Still coming to see my GP on a semi regular basis. Still have tremor and weakness in left arm sometimes in legs also.
March 2008, bronchitis and horrible pain on right side of chest, between breast and arm pit, told it's pluerisy. Still there for 3 weeks. Get a chest xray, normal. About 4 weeks later Gp sends me to a Rhuematologist, she orders tons of blood work, all normal but tells me I have a Fibromyalgia.
Follow up with GP. He wants me to go to another neurologist, still concerned about arm weakness and tremor. Not so much about the fasiculations. Does this sound like it could be ms or am I way off base?
I also want to tell you that since I was about 19 sometimes when I am in the act of getting into my car, both of my legs will go numb. Also have (dont know how to describe it) you know when your hand falls asleep, that feeling, I get that on my head and face and on my side sometimes except on my side it's extremly painful.
Any advice or input would be GREATLY APPRECIATED. Thank you so much for your time.
Jaime
Sponsor
Missjay1977
06-16-2008, 05:46 PM
I forgot to add that I have had spells of vertigo and dizziness for about 10 years as well. Also, I have widespread body pain. Right now it's my right side chest (since march) and the tops of my feet and my big toe. Ugh. sorry. Thanks.
MISHA45
06-16-2008, 07:13 PM
Wow...has anyone ever done a spinal tap on you? Your dx of fibromyalgia sounds way off base. It sounds much more like MS or some type of demylenating syndrome. Your inability to take the dye for the MRI makes that test more inaccurate. Keep looking for a Doctor or a PA who will really really list to you. It can also take years for some of the collegen vascular disorders to show up. Good Luck!! It can be very depressing to feel the way you do and not have an answer...the antidepressants can help you through all of this however there is something else underlying wrong from what you are discribing. GOD BLESS!!! MISHA
Bearygood
06-16-2008, 07:35 PM
Hi, Jaime, and welcome. While I don't really have answers for you, in the time I've been dxed I've seen quite a few of Fibro patients discover they had MS -- either in addition to or instead of a Fibro dx. I have to admit I really don't know a ton about Fibro but to me, it sometimes seems to be kind of a "catch-all" dx.
Some of your sx are consistent with MS, but not MS alone. An MRI is the proper diagnostic tool but the problem is that it sometimes takes a very long time for lesions to show up. Contrast is used to tell if lesions are active and sometimes smaller ones will be easier to see. If you can't have contrast, I would make sure that you are having your MRIs on a very good machine. As Misha mentioned, a spinal tap is often done but that also is not necessarily conclusive -- not all MS patients will have a positive LP.
At least to start, I think your GP's suggestion of seeing another neurologist is a good one. Also, make sure you have a complete blood work-up -- to at least a certain extent, MS is a dx of ruling out other things. Keep on keeping a journal of your sx and the timetable and if you notice anything that you might be doing when you seem to feel worse.
Hang in there and keep us posted!
Some of your sx are consistent with MS, but not MS alone. An MRI is the proper diagnostic tool but the problem is that it sometimes takes a very long time for lesions to show up. Contrast is used to tell if lesions are active and sometimes smaller ones will be easier to see. If you can't have contrast, I would make sure that you are having your MRIs on a very good machine. As Misha mentioned, a spinal tap is often done but that also is not necessarily conclusive -- not all MS patients will have a positive LP.
At least to start, I think your GP's suggestion of seeing another neurologist is a good one. Also, make sure you have a complete blood work-up -- to at least a certain extent, MS is a dx of ruling out other things. Keep on keeping a journal of your sx and the timetable and if you notice anything that you might be doing when you seem to feel worse.
Hang in there and keep us posted!
Nenu
06-16-2008, 08:14 PM
Like Beary said, Fibro does seem like a catch all. Much like Trigeminal Neuralgia, which was part of my 'first' dx. I certainly do have pain characteristic of Trigeminal Neuralgia, but lo and behold, after that dx, I went on to find out I have MS!
I would go to another neuro and see about further investigating this. Good luck :)
I would go to another neuro and see about further investigating this. Good luck :)
Missjay1977
06-16-2008, 10:06 PM
Thanks so much for all of your responses.
Misha, no I have never had a lumbar puncture, and what is a collagen vascular disorder? I have never heard of that before.
Bearygood, I agree with you completly, I think fibro has been a "catch all" diagnosis too, again, no disrespect to anyone who suffers with it. If that is what I have, it is definetly painful. You mentioned making sure to have complete blood work done. I have had everything from thyroid to ana to lupus, lyme, cbc, hiv, d dimer, and a battery of other blood tests twice in the last 6-12 months. The only blood test that came back abnormal was the sed rate which was 29 then they took it again about 6 months later and it was within normal limits. Oh, and my vitamin D was low so I have been taking a supplement for that.
My appointment with the new neuro is in about a week and I will keep you all posted. Thank you for your information and support. I really appreciate it.
Misha, no I have never had a lumbar puncture, and what is a collagen vascular disorder? I have never heard of that before.
Bearygood, I agree with you completly, I think fibro has been a "catch all" diagnosis too, again, no disrespect to anyone who suffers with it. If that is what I have, it is definetly painful. You mentioned making sure to have complete blood work done. I have had everything from thyroid to ana to lupus, lyme, cbc, hiv, d dimer, and a battery of other blood tests twice in the last 6-12 months. The only blood test that came back abnormal was the sed rate which was 29 then they took it again about 6 months later and it was within normal limits. Oh, and my vitamin D was low so I have been taking a supplement for that.
My appointment with the new neuro is in about a week and I will keep you all posted. Thank you for your information and support. I really appreciate it.
kimpossible67
06-16-2008, 10:19 PM
Welcome and sorry your here :(
I'm just curious as to what area of the state you are in, upper, lower, thumb, mid? I'm in the thumb. You sound like you've gone through a lot and I'm sorry. I hope you can find answers and a good neuro. I know there is a MS specialist at Wayne State University (Detroit) that I hear good things about. I was one of those negative taps but positive MS dx. Hang in there best you can while you search for answers. BTW, a lot of the symptoms you speak of, I can nod my head in agreement with you.
You aren't alone by any stretch :)
Thanks so much for all of your responses.
Misha, no I have never had a lumbar puncture, and what is a collagen vascular disorder? I have never heard of that before.
Bearygood, I agree with you completly, I think fibro has been a "catch all" diagnosis too, again, no disrespect to anyone who suffers with it. If that is what I have, it is definetly painful. You mentioned making sure to have complete blood work done. I have had everything from thyroid to ana to lupus, lyme, cbc, hiv, d dimer, and a battery of other blood tests twice in the last 6-12 months. The only blood test that came back abnormal was the sed rate which was 29 then they took it again about 6 months later and it was within normal limits. Oh, and my vitamin D was low so I have been taking a supplement for that.
My appointment with the new neuro is in about a week and I will keep you all posted. Thank you for your information and support. I really appreciate it.
I'm just curious as to what area of the state you are in, upper, lower, thumb, mid? I'm in the thumb. You sound like you've gone through a lot and I'm sorry. I hope you can find answers and a good neuro. I know there is a MS specialist at Wayne State University (Detroit) that I hear good things about. I was one of those negative taps but positive MS dx. Hang in there best you can while you search for answers. BTW, a lot of the symptoms you speak of, I can nod my head in agreement with you.
You aren't alone by any stretch :)
Thanks so much for all of your responses.
Misha, no I have never had a lumbar puncture, and what is a collagen vascular disorder? I have never heard of that before.
Bearygood, I agree with you completly, I think fibro has been a "catch all" diagnosis too, again, no disrespect to anyone who suffers with it. If that is what I have, it is definetly painful. You mentioned making sure to have complete blood work done. I have had everything from thyroid to ana to lupus, lyme, cbc, hiv, d dimer, and a battery of other blood tests twice in the last 6-12 months. The only blood test that came back abnormal was the sed rate which was 29 then they took it again about 6 months later and it was within normal limits. Oh, and my vitamin D was low so I have been taking a supplement for that.
My appointment with the new neuro is in about a week and I will keep you all posted. Thank you for your information and support. I really appreciate it.
Bearygood
06-16-2008, 10:38 PM
Jaime, make sure you've had your B12 checked. Re: vitamin D, what kind do you take and how much? Is you doctor monitoring or going to be monitoring your progress and check your liver? (Too much D can be toxic -- it can build up in the body.) You may know this already, but a D deficiency can cause neuropathic symptoms.
Missjay1977
06-17-2008, 10:08 AM
Kimpossible; I am about an hour north of Detroit. Do you know the name of the doc at Wayne State? Thanks for the info.
Bearygood; I am on 50,000 IU weekly of Vit D for 3 months and then I need to get my blood level rechecked. I do know about the vit d deficiency. Apparently, I was at a 16, the normal range (for that lab anyway) was 25-80. They said anything under 10 was a deficiency, but 16 was a low level. I don't know if that would make a difference or not. I don't think I have had my B12 checked, but I will. Thanks.
Bearygood; I am on 50,000 IU weekly of Vit D for 3 months and then I need to get my blood level rechecked. I do know about the vit d deficiency. Apparently, I was at a 16, the normal range (for that lab anyway) was 25-80. They said anything under 10 was a deficiency, but 16 was a low level. I don't know if that would make a difference or not. I don't think I have had my B12 checked, but I will. Thanks.
kimpossible67
06-17-2008, 12:33 PM
His name is Kahn, last name. I've heard LOTS of good things about him. I had an appointment with him but ended up canceling because I finally got dx'd with my own neuro. Search for MS clinic at Wayne State University and see if he comes up. Good luck.......man, what happened to the weather, it's cold? brrrrrrrr
Missjay1977
06-17-2008, 01:07 PM
Thanks Kim, I will try to find him. Hopefully it wont take forever to get in. Omg, I know, it got so cold. My kids wanted to go to the beach yesterday and I had to tell them no. Gotta love Michigan. LOL.
Missjay1977
06-19-2008, 10:57 AM
Kim! I've got an appt with Dr. Kahn July 15th. Thank you for telling me about him. I will let you know what happens. Thanks again!
ellekay
09-06-2008, 01:56 AM
Sounds like MS to me, and it doesnt always show up with the brain. Lesions dont need to be present for it to be MS.
Dont stop fighting for more tests until you are certain within yourself that they are right. Sometimes we have to listen to our bodies for answers and your body is obviously sending you messages that you need to listen to.
The earlier the dx, the quicker you can go on meds and slow down the progression.
Goodluck and relax. Stress only makes this disease worse.
Dont stop fighting for more tests until you are certain within yourself that they are right. Sometimes we have to listen to our bodies for answers and your body is obviously sending you messages that you need to listen to.
The earlier the dx, the quicker you can go on meds and slow down the progression.
Goodluck and relax. Stress only makes this disease worse.
HBMod07
09-07-2008, 11:51 AM
Please do not respond to old threads.
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