Aa
MS???
Hi Everyone,
I started having symptoms in August of memory loss, numbness in arms, a wild tingling feeling going up my spine, difficulty swallowing,( in which my PCP ordered a swallow eval which came back with a DX of esophageal dysmotility)that no one can explain. My PCP ordered an MRI which came back with a area of hyperintensity in the right frontal lobe. I was then sent to a neurologist you looked at me and said I was to old. I'm 34 and had similiar symptoms happen to me 7 yrs ago which the MRI was normal and I just keep on going. Now this unusual fatigue is taking over. I'm starting to think that I'm crazy. The neurologist did order an LP which I have next wk. I was just wondering if someone could tell me what hyperintensity on a MRI means and do I have a valid concern???/
Thanks
Irisherin
I started having symptoms in August of memory loss, numbness in arms, a wild tingling feeling going up my spine, difficulty swallowing,( in which my PCP ordered a swallow eval which came back with a DX of esophageal dysmotility)that no one can explain. My PCP ordered an MRI which came back with a area of hyperintensity in the right frontal lobe. I was then sent to a neurologist you looked at me and said I was to old. I'm 34 and had similiar symptoms happen to me 7 yrs ago which the MRI was normal and I just keep on going. Now this unusual fatigue is taking over. I'm starting to think that I'm crazy. The neurologist did order an LP which I have next wk. I was just wondering if someone could tell me what hyperintensity on a MRI means and do I have a valid concern???/
Thanks
Irisherin
I'm doing ok. Went to work on Fri but I also waitress on Fri night, but I treated myself and took the night off. Thank god because it was real busy. I wish this was all over and I could get rid of all this craziness, I can deal with all the tingling,weakness and even the memory problems but this fatigue really does suck. It is making me miserble. My little girl said to me this morning around 9:00 am, "mommy you are real happy today, you were sad yesterday". It is having an impact on them and I can't even explain it to them since I don't even know..I feel ok up until 12 noon and then I could just go to sleep. Thanks for checking in. Have a good night..
Erin
Erin
"The fatigue really is awful, isn't it? For me it's not the fatigue of depression, in which you don't care about anything. I WANT to do stuff and I'm interested in stuff, but I cannot move past the fatigue to do it, and when I try it, is so overwhelming that THEN, it's just not worth it."
THESE WERE MY EXACT WORDS!!! I can't believe it...I have said the exact same thing to my Dr.! I am so relieved to find people that understand!
THESE WERE MY EXACT WORDS!!! I can't believe it...I have said the exact same thing to my Dr.! I am so relieved to find people that understand!
How are you feeling? I've gone into "Mamma mode", and want you to be super kind to yourself for the next few days :) Lay down, drink lots of fluids, and keep us posted. Have a wonderful weekend.
Sherry
Sherry
I did call his office and pretended that I was worried about the correct tests being run on the CSF. I had the worst trouble with the hospital that the CSF went to, they would not draw my blood that day because they do not par with my ins, so I went to the hosp that does and they called the neuro because they knew that this was not right. SO, I then had to return to the first hosp. go down to the basement to get my blood drawn. By this time it was 3 hrs after the tap and my head was pumping. I was not a happy camper and was ready to draw my own blood.. I did mention to the secretary to also asked if Oligoclonal bands was ordered.. Hopefully it was. I have that appt in Dec with a MS specialist. I was just hoping that we could solve the mystery sooner. I give all you guys credit. Thanks for listening and answering!!!!
Erin
Erin
Yum . . . just ate another slice of humble pie :) Twas I that did not heed Quix's advice and ended up carrying my on spinal fluid to the lab. That won't happen again, and - for the record - I received better information from this forum than I did from a real live neurologist.
Erin,
The very tests you're wondering about are the ones that provided my answers. I hope they were completed as needed and whatever answers bring you peace of mind are the answers you gain.
All,
Looks like we need several skewers tonight . . . there's gonna be a bonfire!!! I can just picture all of us with 20 foot roasting sticks, cause none of us can stand the heat of the fire. We would make a quite a motley crew :)
Erin,
The very tests you're wondering about are the ones that provided my answers. I hope they were completed as needed and whatever answers bring you peace of mind are the answers you gain.
All,
Looks like we need several skewers tonight . . . there's gonna be a bonfire!!! I can just picture all of us with 20 foot roasting sticks, cause none of us can stand the heat of the fire. We would make a quite a motley crew :)
I don't know if this is classified by a traumatic tap. It was okay until he hit a nerve. It sometimes happens. he said, and it had to happen to me. Immediate reaction was I jumped sky high and shocked the heck out of him. . The only guide he had was himself. My husband ran out of the room and left me to it. Marcie
Gottit in one try this time. The elvated RBC mean that he struck a tiny blood vessel. Called a mildly traumatic tap. You don't wan't to do it, but those tiny buggers are likely to be anywhere, so it's not like you can always avoid them. A traumatic tap will falsely elevate the protein somewhat, because the blood carries in serum. 192 is not a big deal. Just pray he requested the right stuff. He IS a DIM-WIT, tho. I said so early
Q
Q
I just thought you were on "pause" and you were waiting for someone to press "play". Marcie
Erin I thought that was what they were looking for in the CSF - oligoclonal bands and an elevated IgG index. Although you don't HAVE to see the oligoclonal bands in your CSF, it does help in the dx, along with the MRI of the brain. I'm a bit puzzled now.
My RBC in the CSF was flagged out of range at 53, the reference range being 0-25/MM3. My CSF protein was also out of range at 57 (ref. range 15-45 MG/DL). However I had 2 oligoclonal bands.
Marcie
My RBC in the CSF was flagged out of range at 53, the reference range being 0-25/MM3. My CSF protein was also out of range at 57 (ref. range 15-45 MG/DL). However I had 2 oligoclonal bands.
Marcie
Thanks for the laugh!! I saw the 47 posts amd thought Wow - something big must be going on!! That darn enter key!!
Erin - I am glad your spinal tap was not too uncomfortable or eventful!! I hope as Quix says that the tests are just not entered yet!
Have a nice night!
Kristin
Erin - I am glad your spinal tap was not too uncomfortable or eventful!! I hope as Quix says that the tests are just not entered yet!
Have a nice night!
Kristin
That is called Cyber-stuttering... I have no clue why it did that. I couldn't have been me, Idon't look disabled...
All may not be lost with your LP. Sometimes, the preliminary results show only the tests that have been run or in process. It is probably too early for the "set-up" for the IgG Index or the oligoclonal bands. See what the results look like early next week, they may show the IMPORTANT stuff to be pending.
The last time I tried to warn someone away from their neuro (Sherry was it you?) the guy did the tap and MADE HER WALK HER OWN SPINAL FLUID DOWN TO THE LAB!!! If he didn't send the blood for the MS markers then he deserves a complaint to the Board of Medical Examiners, because he wasted the whole endeavor. We'll just hope they haven't logged in the Index and Banding tests yet, okay?
Okay...I hear snickering in the back. Yes, this is the biggest ENTER key screw-up so far on the forum. Wannamakesumthingofit???
Quixilla
All may not be lost with your LP. Sometimes, the preliminary results show only the tests that have been run or in process. It is probably too early for the "set-up" for the IgG Index or the oligoclonal bands. See what the results look like early next week, they may show the IMPORTANT stuff to be pending.
The last time I tried to warn someone away from their neuro (Sherry was it you?) the guy did the tap and MADE HER WALK HER OWN SPINAL FLUID DOWN TO THE LAB!!! If he didn't send the blood for the MS markers then he deserves a complaint to the Board of Medical Examiners, because he wasted the whole endeavor. We'll just hope they haven't logged in the Index and Banding tests yet, okay?
Okay...I hear snickering in the back. Yes, this is the biggest ENTER key screw-up so far on the forum. Wannamakesumthingofit???
Quixilla
The spinal tap is all done and I also did an EMG on the upper extremities, that was not fun. I work here at a doctors office so I looked up the results of the my test on the CSF- everything looks good except that the RBC in the CSF is 192 which the range is 0.00. It doesn't look like he ordered any testing on the oligodonal bands( I spelled it wrong). I brought that up in his office. He did not say anything. I just figured he would do that. Everything I have read states that is one of the tests to do on CSF to DX MS. I'm just real disappointed in this Doc. I wish I could call his office and say something but I'm not suppose to look up those results. What do you think??
Hi, and may all go wel tomorrow. If it doesn't the headache is treatable and usually bearable if you remain lying down.
Yes, you should describe the tightening sensation around your ribs to the neuro.
About the heat. If this is the heat intolerance of MS, then this was my experience. I spent almost 10 years in the deserts of Arizona and Nevada. Heat didn't particularly bother me. Now, since the onset of symptoms about 3 years ago, I cannot even tolerate levels that I used to think were very comfortable, like 75 to 85 degrees. If the house inside hits 74% I suddenly am irritable and throwing off my clothes, and dragging my leg. My sis will check the thermostat and sure enough, we would be over 73. I am most comfortable at 68 and my poor family is bundled up like they're in the arctic.
Others have said the same thing. Even mild heat make the symptoms worse and increases weakness. Families do not understand this and sometimes think you (we) are just being difficult. Finally, after my diagnosis, I was able to give my parent literature on the effects of even slight (partial degree) elevations of core body temperature and they apologized for the years of irritation with me. Nerves whose myelin has been damaged conduct their signals poorly and more slowly. The signal conduction slows further with every increment of increased body temperature.
Let us know how it all goes. Quix
Yes, you should describe the tightening sensation around your ribs to the neuro.
About the heat. If this is the heat intolerance of MS, then this was my experience. I spent almost 10 years in the deserts of Arizona and Nevada. Heat didn't particularly bother me. Now, since the onset of symptoms about 3 years ago, I cannot even tolerate levels that I used to think were very comfortable, like 75 to 85 degrees. If the house inside hits 74% I suddenly am irritable and throwing off my clothes, and dragging my leg. My sis will check the thermostat and sure enough, we would be over 73. I am most comfortable at 68 and my poor family is bundled up like they're in the arctic.
Others have said the same thing. Even mild heat make the symptoms worse and increases weakness. Families do not understand this and sometimes think you (we) are just being difficult. Finally, after my diagnosis, I was able to give my parent literature on the effects of even slight (partial degree) elevations of core body temperature and they apologized for the years of irritation with me. Nerves whose myelin has been damaged conduct their signals poorly and more slowly. The signal conduction slows further with every increment of increased body temperature.
Let us know how it all goes. Quix
Tomorrow is the spinal tap. I started having some tightening around my waist almost like I was flexing my abs ( if I had any after 3 kids they are alittle hard to find..) It happened a couple of times over the summer but it was real painful , but then it went away. I never told the neuro this, should I tell him tomorrow???? The weather up here is finally getting cooler but I still need the AC to stay cool and I'm sweating alot?? What is that all about?? Thanks for all the help I need as much advice as you can give me..
That is a significant size for a lesion! He had no option, but to do an LP, and I think you should take that night off. Just to be safe. I had no problems with my LP, but, some do and you should take the time off to deal if you can. You really need the MRIs of the spine.
The bloodwork should have included:
the things you mentioned, plus
Western Blot for Lyme disease
RPR
ACE
Antiphospholipid Antibodies, with AntiCardiolipin antibodies, & Lupus Anticoagulant
Copper ceruloplasm
Anti- HTLV I & II
B12 levels
Homocysteine level
The fatigue really is awful, isn't it? For me it's not the fatigue of depression, in which you don't care about anything. I WANT to do stuff and I'm interested in stuff, but I cannot move past the fatigue to do it, and when I try it, is so overwhelming that THEN, it's just not worth it.
Do you want help in looking for an MS Specialist? I wrote a series of discussions on the diagnosis of MS and one of them was the importance of being under the care of a true speicalist in MS. The thread is called "Are the McDonald Criteria the End All and Be All?" I'll make sure it's on the front page.
Also did you read the thread on "MRIs, Lesions and Symptoms?" There is a lot of useful info there, too.
Quix
The bloodwork should have included:
the things you mentioned, plus
Western Blot for Lyme disease
RPR
ACE
Antiphospholipid Antibodies, with AntiCardiolipin antibodies, & Lupus Anticoagulant
Copper ceruloplasm
Anti- HTLV I & II
B12 levels
Homocysteine level
The fatigue really is awful, isn't it? For me it's not the fatigue of depression, in which you don't care about anything. I WANT to do stuff and I'm interested in stuff, but I cannot move past the fatigue to do it, and when I try it, is so overwhelming that THEN, it's just not worth it.
Do you want help in looking for an MS Specialist? I wrote a series of discussions on the diagnosis of MS and one of them was the importance of being under the care of a true speicalist in MS. The thread is called "Are the McDonald Criteria the End All and Be All?" I'll make sure it's on the front page.
Also did you read the thread on "MRIs, Lesions and Symptoms?" There is a lot of useful info there, too.
Quix
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