Aa
Should I have a spinal tap?
Im a 46 yo female with a PMH of bilateral PTX secondary to congenital blebs with bilateral VATS (1999) and Right thoracotomy with RML bleb resection (2007), SA node ablation x2 (SVTs).
My primary MD recommended me to see a Neurologist and I do have an appointment tomorrow. She suggested that I will most likely have a lumbar puncture to obtain CSF for oligoclonal bands, EMG and evoked potential testing.
What led her to do this is because for the past year, I have had mononucleosis. It seemed that the symptoms disappeared at one point and then returned a few months later (my titers went up again), leaving me extremely fatigued, myalgia, night sweats, nausea (still have that on occasion and take Zofran for it), paresthesia left leg and bilateral feet, weird sensations such as hip feeling dislocated or knee caps being pulled, sensory altercations ie: goosebumps unilaterally on anterior aspect of thigh and back of calf although Im not cold, but the limb feels that way?, back pain, bone pain (sometimes), increased frequency of urination and rare incontinence.
I have had seen a neurologist in the past (3 years ago) for ataxia (positive rhomberg), memory problems, essential tremors and paresthesia. I thought it was from the postoperative narcotic use for my post thoracic pain sydrome (PTPS) that caused this. The PTPS had dissipated and I am no longer on any narcotic or OTC medication. It took about 6 months s/p surgical intervention (makes sense for nerves to heal).
The MRI on Oct 2007:
Impression: Several small bilateral supratentorial white matter T2 hypersensitivities, varying in size 4-5mm. No mass effect or posterior fossa lesions are seen. Small lesions within the anterior aspect of the left centrum semiovale. Close clinical correlation is advised. Non specific finding in a patient this age, likely to inflammatory, traumatic or ischemic disease. Demyelination disease should be considered.
I had another MRI brain and spine done 8 months later with no change.
Recent MRI without contrast (Nov 8th 2010)
Impression: Scattered punctate supratentorial white matter foci of abnormal signal. (It states there were scattered punctate foci of abnormal signal in the periventricular white matter (is this the same area?)
The only change is now I have new lesions in a different area that was not there on the previous MRIs on the brain and the suspected hemangiomas (which I realize they are benign vascular tumors).
I am asking if you feel that I should have the spinal tap or does this not really support ruling out MS? Would doing an EMG and/or evoked potential first be appropriate before spinal tap?
Can chronic fatigue syndrome cause this? Does EBV have any correlation with MS? Could it just still be EBV?
I forgot to mention that my cspine (anterior column marrow is heterogenous and cervical body signal is heterogenous) I have no idea what that means in radiology. A nonspecific finding or nothing at all? Or something?
C5-C6 tiny focal paracentral disc osteophyte complex
S2 - focus hypersensitivity significance unclear given the partial fat compression failure in this region, hemangioma is considered.
Mid thoracic vertebral body foci of hypersensitivity reflects hemangiomas.
Anyone with the time and patience to read this and respond would be greatly appreciated!
My primary MD recommended me to see a Neurologist and I do have an appointment tomorrow. She suggested that I will most likely have a lumbar puncture to obtain CSF for oligoclonal bands, EMG and evoked potential testing.
What led her to do this is because for the past year, I have had mononucleosis. It seemed that the symptoms disappeared at one point and then returned a few months later (my titers went up again), leaving me extremely fatigued, myalgia, night sweats, nausea (still have that on occasion and take Zofran for it), paresthesia left leg and bilateral feet, weird sensations such as hip feeling dislocated or knee caps being pulled, sensory altercations ie: goosebumps unilaterally on anterior aspect of thigh and back of calf although Im not cold, but the limb feels that way?, back pain, bone pain (sometimes), increased frequency of urination and rare incontinence.
I have had seen a neurologist in the past (3 years ago) for ataxia (positive rhomberg), memory problems, essential tremors and paresthesia. I thought it was from the postoperative narcotic use for my post thoracic pain sydrome (PTPS) that caused this. The PTPS had dissipated and I am no longer on any narcotic or OTC medication. It took about 6 months s/p surgical intervention (makes sense for nerves to heal).
The MRI on Oct 2007:
Impression: Several small bilateral supratentorial white matter T2 hypersensitivities, varying in size 4-5mm. No mass effect or posterior fossa lesions are seen. Small lesions within the anterior aspect of the left centrum semiovale. Close clinical correlation is advised. Non specific finding in a patient this age, likely to inflammatory, traumatic or ischemic disease. Demyelination disease should be considered.
I had another MRI brain and spine done 8 months later with no change.
Recent MRI without contrast (Nov 8th 2010)
Impression: Scattered punctate supratentorial white matter foci of abnormal signal. (It states there were scattered punctate foci of abnormal signal in the periventricular white matter (is this the same area?)
The only change is now I have new lesions in a different area that was not there on the previous MRIs on the brain and the suspected hemangiomas (which I realize they are benign vascular tumors).
I am asking if you feel that I should have the spinal tap or does this not really support ruling out MS? Would doing an EMG and/or evoked potential first be appropriate before spinal tap?
Can chronic fatigue syndrome cause this? Does EBV have any correlation with MS? Could it just still be EBV?
I forgot to mention that my cspine (anterior column marrow is heterogenous and cervical body signal is heterogenous) I have no idea what that means in radiology. A nonspecific finding or nothing at all? Or something?
C5-C6 tiny focal paracentral disc osteophyte complex
S2 - focus hypersensitivity significance unclear given the partial fat compression failure in this region, hemangioma is considered.
Mid thoracic vertebral body foci of hypersensitivity reflects hemangiomas.
Anyone with the time and patience to read this and respond would be greatly appreciated!
If you are applying for medicaid and or SSI through low income once you are accepted there is may be a mandatory two year wait to use it. If you get medicaid through Disability from a job and not low income there is not.
If you are not eligible for a group plan through work or a spouse you can apply for the Federal High Risk Pool which the premiums are less than $400 a month depending on your deductable. Some States have High Risk Pools. That is a better bargain than the insurance I am on.
I fell through the cracks and just have to make payments on top of $600 insurance premiums every month. I had to pay $1000 out of pocket on top of insurance for my MRI in February. I am never having another one. I set it up in 12 payments. Now I get to add the heart work up to those payments it will never end.
Alex
If you are not eligible for a group plan through work or a spouse you can apply for the Federal High Risk Pool which the premiums are less than $400 a month depending on your deductable. Some States have High Risk Pools. That is a better bargain than the insurance I am on.
I fell through the cracks and just have to make payments on top of $600 insurance premiums every month. I had to pay $1000 out of pocket on top of insurance for my MRI in February. I am never having another one. I set it up in 12 payments. Now I get to add the heart work up to those payments it will never end.
Alex
My inital symptoms came on suddenly. I had severe tightness / spasms in the back of my left thigh in Dec '08. I couldn't even drive because the spasms were so bad. This only lasted for 2 or 3 days and went away. Then a little over a month later (Jan '09) the same symptoms came back again, along with sporadic incontinence.
Maybe a week or 2 after that my sensory sx started: Numb / tingling feet, pinpricks, and what felt like water running down the inside of my left leg. Also have bladder urgency & frequency & spasticity
Then in Feb '09 I had optic neuritis in my left eye. (pain with eye movement & washed out vision). Same thing around Aug/Sept '09, but in my right eye.
Later on down the road I started having some issues walking. Mainly walking up hills and stairs. It felt like I was trying to walk/run in a swimming pool - my legs feel really weak. After I walk they feel shaky on the inside, like I just finished a huge workout. And I get numb/pinpricks around the left side of my groin off and on. Hypertonia, postive Romberg, hyper knee reflexes, etc.
I also have had numbness/tingling/pinpricks on the left side of my cheek (inside & out). gums, lip, and tongue.
I've had brain, c-spine, t-spine, & lumbar MRIs. In my brain, I have 6 lesions - 4 of them are periventricular and 1 infratentorial. And I have 3 T1 black holes. C-spine lesion between C4-6 and T-spine lesion between T9-10. My LP came back negative for o-bands.
I have more sx, but you get the idea. I hope this helps...
-Kelly
Maybe a week or 2 after that my sensory sx started: Numb / tingling feet, pinpricks, and what felt like water running down the inside of my left leg. Also have bladder urgency & frequency & spasticity
Then in Feb '09 I had optic neuritis in my left eye. (pain with eye movement & washed out vision). Same thing around Aug/Sept '09, but in my right eye.
Later on down the road I started having some issues walking. Mainly walking up hills and stairs. It felt like I was trying to walk/run in a swimming pool - my legs feel really weak. After I walk they feel shaky on the inside, like I just finished a huge workout. And I get numb/pinpricks around the left side of my groin off and on. Hypertonia, postive Romberg, hyper knee reflexes, etc.
I also have had numbness/tingling/pinpricks on the left side of my cheek (inside & out). gums, lip, and tongue.
I've had brain, c-spine, t-spine, & lumbar MRIs. In my brain, I have 6 lesions - 4 of them are periventricular and 1 infratentorial. And I have 3 T1 black holes. C-spine lesion between C4-6 and T-spine lesion between T9-10. My LP came back negative for o-bands.
I have more sx, but you get the idea. I hope this helps...
-Kelly
Yes, I will have to apply and I can do so without being on SS disability. In fact anyone can if their income falls below a certain level. A new law passed to if you even have $$ from life insurance or other means that medicaid does not count that. Although I don't have anything extra.
I want to go back to work, I really do, but the 12 hour shifts (really 14 hours +) is a bit much for me. My primary MD (who I work with at my hospital lol) says she thinks it is not safe for me or my patients if Im mentally and physically fatigued -- which I agree. I value my patient's lives as well as my licensure as a RN.
Well my tingling came back. Guess I spoke too soon. In fact its a new sensation, like my left leg feels cold, like submerged in cold water. oh well if that's the worst of it for today Im golden. A little bit of visual acuity adjustment but that's it.
Kelly, I hate to have you rehash your symptoms but could you tell me all of them? What was on your MRI? Did you get a LP too?
I love that I am surrounded by a lively bunch. I think its uplifting!!!! Thank god!
I want to go back to work, I really do, but the 12 hour shifts (really 14 hours +) is a bit much for me. My primary MD (who I work with at my hospital lol) says she thinks it is not safe for me or my patients if Im mentally and physically fatigued -- which I agree. I value my patient's lives as well as my licensure as a RN.
Well my tingling came back. Guess I spoke too soon. In fact its a new sensation, like my left leg feels cold, like submerged in cold water. oh well if that's the worst of it for today Im golden. A little bit of visual acuity adjustment but that's it.
Kelly, I hate to have you rehash your symptoms but could you tell me all of them? What was on your MRI? Did you get a LP too?
I love that I am surrounded by a lively bunch. I think its uplifting!!!! Thank god!
Wow, I don't know anything about Medicaid. I hope you don't get lost in the cracks of the system. I don't know if you have to be on SS disability to get it or how it all works.
I'm going to try to work as long as I can, because I seriously CANNOT afford to lose my medical insurance. And now that I have a pre-existing condition, who knows how that all works.
Yes, I have RRMS. My symptoms started almost 2 yrs ago. I Initially went to an MS neuro here in Colorado Springs. I think he may have had way too many patients to do as good of a job as I expected of him. So, I transferred to the Rocky Mtn MS Ctr this July and was actually diagnosed there.
I see that you have found the lively bunch of us here. :-)
-Kelly
I'm going to try to work as long as I can, because I seriously CANNOT afford to lose my medical insurance. And now that I have a pre-existing condition, who knows how that all works.
Yes, I have RRMS. My symptoms started almost 2 yrs ago. I Initially went to an MS neuro here in Colorado Springs. I think he may have had way too many patients to do as good of a job as I expected of him. So, I transferred to the Rocky Mtn MS Ctr this July and was actually diagnosed there.
I see that you have found the lively bunch of us here. :-)
-Kelly
Shhh...I think so far this morning, the paresthesia went away! OMG! Could this be? I don't want to toot my own horn or speak too soon, but hey!
Unfortunately Kelly, I have to apply for medicaid. My insurance was up on Oct 31st, and found out two days ago. They wrote on the papers date of notification 11/5/10 but postmarked on 11/12/10 and I received the lovely letter of notification on the 17th of November. My status changed from part-time to per diem which leaves me to pay the premium at full cost $525.00. I can't afford it. So where does that leave me? To apply for medicaid and wait for approval until I get to see a neuro. Lucky me. I'm sure Im not the only one to go through this. My short term disability lasts for 26 weeks which means, in February it will end. Now what? Go to work anyways? If I feel up to it I suppose I can! Question is, will they give me a part-time position again after knowing my diagnosis? Quite a conundrum!
Bob- I feel your pain! I can't say I do on a daily basis but I did have it twice and it is the worst pain I have ever felt! A tension pneumothorax is a blessing compared to that! Seriously! Dont stop taking whatever works for it!
Kelly, are you diagnosed with MS too? Sorry if I have overlooked your profile, just wondering.
Unfortunately Kelly, I have to apply for medicaid. My insurance was up on Oct 31st, and found out two days ago. They wrote on the papers date of notification 11/5/10 but postmarked on 11/12/10 and I received the lovely letter of notification on the 17th of November. My status changed from part-time to per diem which leaves me to pay the premium at full cost $525.00. I can't afford it. So where does that leave me? To apply for medicaid and wait for approval until I get to see a neuro. Lucky me. I'm sure Im not the only one to go through this. My short term disability lasts for 26 weeks which means, in February it will end. Now what? Go to work anyways? If I feel up to it I suppose I can! Question is, will they give me a part-time position again after knowing my diagnosis? Quite a conundrum!
Bob- I feel your pain! I can't say I do on a daily basis but I did have it twice and it is the worst pain I have ever felt! A tension pneumothorax is a blessing compared to that! Seriously! Dont stop taking whatever works for it!
Kelly, are you diagnosed with MS too? Sorry if I have overlooked your profile, just wondering.
Oh, Bob still has it. If I miss a dose of Tegretol, that ache and sometimes the "lightning" comes back with a vengence.
Bob
Bob
With MS, sometimes your symptoms will not go away completely between attacks.
BTW, I don't know if you know - but trigeminal neuralgia is also a symptom of MS.
Bob has had it, and I'm sure he can relate.
I still have numb/tingling feet every day. And I still get the tightness/pulling behind my left thigh and the stiffness in my knee, among the other symptoms that seem to stick around.
The important point is, if you do have MS, there are disease modifying drugs (DMDs) that can help you have a lot less disability in the future. So, I hope they can figure everything out for you as soon as possible.
Everyone on this forum seems to be really helpful and supportive and several of them have medical backgrounds.
Let us know what the doctor has to say....
-Kelly
BTW, I don't know if you know - but trigeminal neuralgia is also a symptom of MS.
Bob has had it, and I'm sure he can relate.
I still have numb/tingling feet every day. And I still get the tightness/pulling behind my left thigh and the stiffness in my knee, among the other symptoms that seem to stick around.
The important point is, if you do have MS, there are disease modifying drugs (DMDs) that can help you have a lot less disability in the future. So, I hope they can figure everything out for you as soon as possible.
Everyone on this forum seems to be really helpful and supportive and several of them have medical backgrounds.
Let us know what the doctor has to say....
-Kelly
You're absolutely right Kelly. In 2007/08 I had symptoms that I just discussed with my primary MD today on the telephone (she's a new dr for me) and she said "It sounds like you've been dealing with this for 3 years on and off already. Although, I can say that it really didn't hit me until I uttered the words to her about some old symptoms that it clicked in my head saying, "yeah I have been dealing with these symptoms on and off for awhile now, although when they go away, you forget about it until it comes back again.".
One time I had trigeminal neuralgia. It was the most painful experience let me tell you. Thank god it lasted only a week. But, without realizing it, just this past year I had another similar feeling on the opposite side of my mandible, ear and temporal area but it was after a tooth extraction that I thought went bad and the oral surgeon just manipulated my jaw too much and this was the end result. Now that I think about it, the symptoms of pain got worse over time and did not dissipate until 9 days later. Again another painful experience but the oral surgeon in the hospital referred to see me did not diagnose that as trigeminal neuralgia but as periotitis. I wonder if it was what he said it was or if that recent experience was a repeat of what happened in 2007? Who knows. I think the next time if that happens, I will ask my primary to refer a neuro MD. Thankfully, I have had only two experiences with that type of severe pain.
Now it seems that my body is favoring neurosensory issues on the left side, the left leg for the most part. Hip and knee pain, paresthesia, the goosebump phenomenon, minuscule type stuff but when all combined as you all well know, it's a pain in the ***. Hard not to think about your symptoms when they are there on a daily basis reminding you of it.
I truly thank you for responding to me. When you feel alone and helpless, someone like you or Bob and many others who took the time to read and respond to me makes me feel so much better.
Im so used to caring for others and not of myself. Now that Im on the other side of the fence, it is truly a hard concept to swallow.
Im not sure why I am experiencing the paresthesia for so long now. It's been at least a month. If this is relapsing remitting, then why is it continuing on and on? Unless of course the hip, low back and knee pain remits for a day or two or more and then returns. I was hoping a longer period of time in between and without any symptoms whatsoever. I suppose Im unrealistic with this.
I ask myself, "does this get any better or will it get worse?"
HVAC - I'll take that advice, I'll get sedated. LOL! Thanks!!!!
One time I had trigeminal neuralgia. It was the most painful experience let me tell you. Thank god it lasted only a week. But, without realizing it, just this past year I had another similar feeling on the opposite side of my mandible, ear and temporal area but it was after a tooth extraction that I thought went bad and the oral surgeon just manipulated my jaw too much and this was the end result. Now that I think about it, the symptoms of pain got worse over time and did not dissipate until 9 days later. Again another painful experience but the oral surgeon in the hospital referred to see me did not diagnose that as trigeminal neuralgia but as periotitis. I wonder if it was what he said it was or if that recent experience was a repeat of what happened in 2007? Who knows. I think the next time if that happens, I will ask my primary to refer a neuro MD. Thankfully, I have had only two experiences with that type of severe pain.
Now it seems that my body is favoring neurosensory issues on the left side, the left leg for the most part. Hip and knee pain, paresthesia, the goosebump phenomenon, minuscule type stuff but when all combined as you all well know, it's a pain in the ***. Hard not to think about your symptoms when they are there on a daily basis reminding you of it.
I truly thank you for responding to me. When you feel alone and helpless, someone like you or Bob and many others who took the time to read and respond to me makes me feel so much better.
Im so used to caring for others and not of myself. Now that Im on the other side of the fence, it is truly a hard concept to swallow.
Im not sure why I am experiencing the paresthesia for so long now. It's been at least a month. If this is relapsing remitting, then why is it continuing on and on? Unless of course the hip, low back and knee pain remits for a day or two or more and then returns. I was hoping a longer period of time in between and without any symptoms whatsoever. I suppose Im unrealistic with this.
I ask myself, "does this get any better or will it get worse?"
HVAC - I'll take that advice, I'll get sedated. LOL! Thanks!!!!
Lisa,
If you ever need the LP and are scared they can sedate you. They gave me something and I remember the IV and then waking up after the fact. I got freaked out for nothing. They had to arrange it ahead but it was well worth it. Good luck. Not knowing is so hard. It gets better.
Alex
If you ever need the LP and are scared they can sedate you. They gave me something and I remember the IV and then waking up after the fact. I got freaked out for nothing. They had to arrange it ahead but it was well worth it. Good luck. Not knowing is so hard. It gets better.
Alex
Hi Lisa,
I'm not a doctor, so I can't say for sure what you might have. But based on my experience,
yes, MS would definitely be pretty high on the list of things that it could be.
I see that you wrote that your initial symptoms in 2007 came and passed, and now you are having similar issues again. This is typical of the relapsing remitting form of MS. All of your symptoms sound like MS symptoms, except maybe the night sweats, nausea, and bone pain, which I can't say for sure if they're related to MS, your mono, or something else. When I had mono, I had severe fatigue, some nausea, and night sweats.
Good luck with getting a correct diagnosis.
-Kelly
I'm not a doctor, so I can't say for sure what you might have. But based on my experience,
yes, MS would definitely be pretty high on the list of things that it could be.
I see that you wrote that your initial symptoms in 2007 came and passed, and now you are having similar issues again. This is typical of the relapsing remitting form of MS. All of your symptoms sound like MS symptoms, except maybe the night sweats, nausea, and bone pain, which I can't say for sure if they're related to MS, your mono, or something else. When I had mono, I had severe fatigue, some nausea, and night sweats.
Good luck with getting a correct diagnosis.
-Kelly
Thank you for responding Kelly. Yes, that is what my primary MD said in regard to EBV and MS. She finally said to me, "Lisa we can not continue to blame Mono for your symptoms, something else is going on", hence the MRI of brain and spine. I know as a medical professional 95% of the population has EBV, whether or not if they become symptomatic is a different story, but (this is for Maureen) EBV will always remain and never goes away as far as a positive titer. The symptoms will.
When I had the first MRI of brain in 2007, I wasn't as concerned because of the location of the lesions. When the MRI was repeated 8 months later with no significant change, I again was relieved although I was having some sensory deficits which made me go back into see the Neurologist at the time. It passed. Then with the Mono this year, I started to think that the extreme fatigue and paresthesia along with pain in one extremity was a bit out of the ordinary with EBV. Therefore another MRI was done. I asked for the printed out results of the brain after the spine was completed the next day and compared the impression results. The new lesions in the periventricular white matter concerned me because now my symptoms are really weird. (goosebumps on one area of my left thigh and the back of my calf) pain in the left hip as if it was in subluxation, knee caps feeling like they were going to pop off, numb/tingling of bilateral feet, pain in the abdomen for no apparent reason (like pancreatitis). There are many more symptoms but they are more annoying than painful. I had a weekend last week where for 3 days I couldnt move due to pain in left leg. I finally took a medrol pack along with motrin around the clock and 1 percocet every 6 hours and finally after day 2 I felt releif, although I still felt the paresthesia, it didnt matter as long as the pain subsided. The fatigue doesn't go away, although I have days where Im more energetic than others.
With all this said, I wonder if MS is a probability more than a possibility. I realize it is hard to diagnose MS or it takes a long time to do so. Not that I want it, believe me I've had enough trauma/surgery in my life that I do not need another thing to deal with LOL. But I also want to be realistic.
If you think this appears to be MS, then dont be afraid to tell me, therefore I can mentally prepare myself and deal with it accordingly making sure I do follow-up with Neuro and go through the motions to get to the bottom of this.
Thank you Maureen for your support. I too, wish you the best of luck!!!! I find this forum very nice!
When I had the first MRI of brain in 2007, I wasn't as concerned because of the location of the lesions. When the MRI was repeated 8 months later with no significant change, I again was relieved although I was having some sensory deficits which made me go back into see the Neurologist at the time. It passed. Then with the Mono this year, I started to think that the extreme fatigue and paresthesia along with pain in one extremity was a bit out of the ordinary with EBV. Therefore another MRI was done. I asked for the printed out results of the brain after the spine was completed the next day and compared the impression results. The new lesions in the periventricular white matter concerned me because now my symptoms are really weird. (goosebumps on one area of my left thigh and the back of my calf) pain in the left hip as if it was in subluxation, knee caps feeling like they were going to pop off, numb/tingling of bilateral feet, pain in the abdomen for no apparent reason (like pancreatitis). There are many more symptoms but they are more annoying than painful. I had a weekend last week where for 3 days I couldnt move due to pain in left leg. I finally took a medrol pack along with motrin around the clock and 1 percocet every 6 hours and finally after day 2 I felt releif, although I still felt the paresthesia, it didnt matter as long as the pain subsided. The fatigue doesn't go away, although I have days where Im more energetic than others.
With all this said, I wonder if MS is a probability more than a possibility. I realize it is hard to diagnose MS or it takes a long time to do so. Not that I want it, believe me I've had enough trauma/surgery in my life that I do not need another thing to deal with LOL. But I also want to be realistic.
If you think this appears to be MS, then dont be afraid to tell me, therefore I can mentally prepare myself and deal with it accordingly making sure I do follow-up with Neuro and go through the motions to get to the bottom of this.
Thank you Maureen for your support. I too, wish you the best of luck!!!! I find this forum very nice!
I find the statistic about EBV interesting. I have "chronic" ebv, according to my primary physician. This is what initially got the ball rolling with the neurologist visit. I was having strange symptoms and my primary said it was due to me having the chronic ebv. She finally said I should see a neurologist for "peace of mind".....here I am almost a year later, seeing my second neurologist.
Now that I am thinking about it, I wish I should have found a neuro that specializes in MS. The group I am going to do specialize in neurological diseases, and do come highly recommended so hopefully I made the right choice.
I know he will want to do an LP if the other blood work and tests come back normal. He said at 41 I should not have the MRI results that I have.
good luck!
Maureen
Now that I am thinking about it, I wish I should have found a neuro that specializes in MS. The group I am going to do specialize in neurological diseases, and do come highly recommended so hopefully I made the right choice.
I know he will want to do an LP if the other blood work and tests come back normal. He said at 41 I should not have the MRI results that I have.
good luck!
Maureen
Hi Lisa,
Yes, according to different studies, MS has been shown to be related to EBV. It seems to raise your risk of getting MS. Of course, not everyone who has EBV will get MS. But in a recent study, 100% of people who got MS were infected with EPV.
Also, I believe periventricular abnormal signal is typical of MS.
I think about 10% of people who have MS initially test negative on an LP. I was afraid of getting an LP. I was relieved afterwards, and found that my fears were unsubstantiated. I had no problems with it.
I would also recommend going to a neurologist that specializes in MS. I had to wait about 3 months for my first appt with the initial MS specialist that I saw.
It looks like your new MRI was not done according to MS protocol. The first step of your new neuro may actually be to order a new set of MRI scans using MS protocol.
Good luck,
Kelly
Yes, according to different studies, MS has been shown to be related to EBV. It seems to raise your risk of getting MS. Of course, not everyone who has EBV will get MS. But in a recent study, 100% of people who got MS were infected with EPV.
Also, I believe periventricular abnormal signal is typical of MS.
I think about 10% of people who have MS initially test negative on an LP. I was afraid of getting an LP. I was relieved afterwards, and found that my fears were unsubstantiated. I had no problems with it.
I would also recommend going to a neurologist that specializes in MS. I had to wait about 3 months for my first appt with the initial MS specialist that I saw.
It looks like your new MRI was not done according to MS protocol. The first step of your new neuro may actually be to order a new set of MRI scans using MS protocol.
Good luck,
Kelly
I had two visits with a Neurologist- Neuroophthalmologist and moved myself over to the Neurology Clinic at the University Hospital in Aurora, CO They read the records and assigned me to an MS fellow under one of the MS specialists.
The best thing is to let the docs make up their own minds. I concentrated on the things that bothered me the most, not all my symptoms.
Bob
The best thing is to let the docs make up their own minds. I concentrated on the things that bothered me the most, not all my symptoms.
Bob
Bob (sorry for CBOB),
Thank you, I did read about Somatosensory Evoked Potentials test.
I'm just wondering, do my symptoms appear atypical and not too complex? I do not want to look like an alarmist..You know? Like I'm looking for trouble -- and unnecessarily consulting a MS specialist because I have a few symptoms that may go along with MS. Today is an alright day. Took some motrin for low back pain, got the goosebumps on my anterior thigh and radiating down my entire left leg (which is nothing really if you think about it -- more of an annoyance) and to think to call a MS specialist with such minute symptoms that can be controlled by Motrin -- well...You understand what I'm saying.
.Just want to find a way to get me back to work and rid of this damn fatigue, myalgia, paresthesia, bone pain, etc.
Thank you, I did read about Somatosensory Evoked Potentials test.
I'm just wondering, do my symptoms appear atypical and not too complex? I do not want to look like an alarmist..You know? Like I'm looking for trouble -- and unnecessarily consulting a MS specialist because I have a few symptoms that may go along with MS. Today is an alright day. Took some motrin for low back pain, got the goosebumps on my anterior thigh and radiating down my entire left leg (which is nothing really if you think about it -- more of an annoyance) and to think to call a MS specialist with such minute symptoms that can be controlled by Motrin -- well...You understand what I'm saying.
.Just want to find a way to get me back to work and rid of this damn fatigue, myalgia, paresthesia, bone pain, etc.
SSEP is a Somatosensory Evoked Potentials. MS Specialist is a subspecialty of Neurology. Many of them do better with more complex patients that have other disease processes or atypical presentations.
Bob
Bob
Thanks COBOB for commenting. I think I'm a bit nervous about someone giving me a spinal tap. All my luck (which if you knew me you'd know), I would have some sort of complication from that. I would rather avoid it if possible.
I have had no trauma, no vasoactive drugs or history of migraines. I think I've had a headache twice in my entire life (one of them was after my wedding day from a hangover LOL).
Considering my symptoms, I feel like Im 80 years old instead of 46! I also feel like I'm whining which I do not like to do but...I've been having these symptoms for almost a year (extreme fatigue, myalgia, back pain (on and off) paresthesia, etc.) and I'm quite tired of it. I took a leave of absence from work (Im a RN) hopes the Mono would subside with rest but it appears I can't even imagine doing 13 to 14 hour shifts twice a week.
I'm unaware of the acronyms for some tests but I can google them (SSEP). I was also wondering can hemagiomas cause these symptoms if they were big enough? Although the radiologist did not comment on the report the size of the hemangiomas which he stated that are in my thoracic and lumbar spine, I took that as it carries no significance since they are considered benign tumors.
Hmmm a MS specialist over a Neurologist. Should I cancel tomorrow's appointment? The one Neuro who deals with MS that was recommended to me could not see me until late december. Perhaps I should wait. I can always take a medrol pack and motrin if the pain attacks come back.
Again thank you for your time.
I have had no trauma, no vasoactive drugs or history of migraines. I think I've had a headache twice in my entire life (one of them was after my wedding day from a hangover LOL).
Considering my symptoms, I feel like Im 80 years old instead of 46! I also feel like I'm whining which I do not like to do but...I've been having these symptoms for almost a year (extreme fatigue, myalgia, back pain (on and off) paresthesia, etc.) and I'm quite tired of it. I took a leave of absence from work (Im a RN) hopes the Mono would subside with rest but it appears I can't even imagine doing 13 to 14 hour shifts twice a week.
I'm unaware of the acronyms for some tests but I can google them (SSEP). I was also wondering can hemagiomas cause these symptoms if they were big enough? Although the radiologist did not comment on the report the size of the hemangiomas which he stated that are in my thoracic and lumbar spine, I took that as it carries no significance since they are considered benign tumors.
Hmmm a MS specialist over a Neurologist. Should I cancel tomorrow's appointment? The one Neuro who deals with MS that was recommended to me could not see me until late december. Perhaps I should wait. I can always take a medrol pack and motrin if the pain attacks come back.
Again thank you for your time.
Welcome to the forum
46 is kind of young for ischemic changes on an MRI. They are typical in a 60+ age group. If you have not had trauma, these are the type of lesions seen in demyelinating diseases like MS. Some of your symptoms seems more associated with CNS disease than typical Mononucleosis.
Unless you have had symptoms of visual changes in the past, I'm not sure a VEP would be in order. Since you seems to have sensory changes in you legs, an SSEP might prove more useful.
As far as an LP to check for OCBs, it may be useful. I think you should see an MS Specialist and not just a general Neurologist. It may prevent you from going through some tests you may not need.
Bob
46 is kind of young for ischemic changes on an MRI. They are typical in a 60+ age group. If you have not had trauma, these are the type of lesions seen in demyelinating diseases like MS. Some of your symptoms seems more associated with CNS disease than typical Mononucleosis.
Unless you have had symptoms of visual changes in the past, I'm not sure a VEP would be in order. Since you seems to have sensory changes in you legs, an SSEP might prove more useful.
As far as an LP to check for OCBs, it may be useful. I think you should see an MS Specialist and not just a general Neurologist. It may prevent you from going through some tests you may not need.
Bob
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