Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Hi Tim, Lumbar Punture is a necessary step in diagnosis.. They aren't trying to prove NS, it won't show that.. but it will rule out MS, I'm afraid a diagnosis of NS is usually consistant with ruling out other things, I've had probably 10-12 in my 10 years of NS.. EMG, also is necessary as it will show them hypersensitivity.. and or nerve damage.. I myself think both of these are a reasonable next thing to do. Hugs, NS-Moderator Re : neourosarc???? Ok well i was here some time back 8 months ago,, and have had to fight to get a Brain MRI with and without contrast ,, after 8 months guess what report came back after finding a neouro that would listen to me finally he was older but knew i was serious any way test came back and he calle me in and also had phone confrence with radiologist ,, they found that i had multi Granulomas on my brain consistent with sarcoid or M.S.? so myquestion whats next ok,,, neouro wants to do lumbar puncture and eeg,, emg legs feel like there heavy below knees in both legs nerves jump and spasm all day now so whats next any body give me some direction with this ok Please Tim In North Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Tim, I agree with on the LP & EMG. I'm not sure what the EEG would accomplish; I've had them as part of sleep studies, but not as a solo test. You might ask what they would be looking for on the EEG. It's not like it's painful or invasive, but if you are paying part of the bill, it might be a chunk of change. And I personally don't believe in doing unnecessary testing, regardless of who's paying for it. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: topdat1@...Date: Tue, 28 Sep 2010 12:19:02 -0500Subject: Re: Re : neourosarc???? Hi Tim, Lumbar Punture is a necessary step in diagnosis.. They aren't trying to prove NS, it won't show that.. but it will rule out MS, I'm afraid a diagnosis of NS is usually consistant with ruling out other things, I've had probably 10-12 in my 10 years of NS.. EMG, also is necessary as it will show them hypersensitivity.. and or nerve damage.. I myself think both of these are a reasonable next thing to do. Hugs, NS-Moderator Re : neourosarc???? Ok well i was here some time back 8 months ago,, and have had to fight to get a Brain MRI with and without contrast ,, after 8 months guess what report came back after finding a neouro that would listen to me finally he was older but knew i was serious any way test came back and he calle me in and also had phone confrence with radiologist ,, they found that i had multi Granulomas on my brain consistent with sarcoid or M.S.? so myquestion whats next ok,,, neouro wants to do lumbar puncture and eeg,, emg legs feel like there heavy below knees in both legs nerves jump and spasm all day now so whats next any body give me some direction with this ok Please Tim In North Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Well the eeg/ and ncv i have had now comes the eng whats its purpose ??/ i can tell you though my brainshave been at me so bad now they have me on hydrocodone ,, i just want an answer to this how long is recovery from lumbar and how long does it take for results to come back ,,,, ??? my biggest problem along with everything else is i feel like i have weights on both my lower legs below knees and they feel heavy but i still keep going but when brain starts zinging me at me and the tingling in arms and legs and feet draw up thats when i just stop fatigue gets at me more now also, seems like each day is diffrent now , and i forgot when my bones in lower back and hips start whats with all of this just need to be educated ???on this so i can try and help myself deal with this more / Thanks Rose And Terresa for answering me Tim in North Fl > > > Tim, I agree with on the LP & EMG. I'm not sure what the EEG would accomplish; I've had them as part of sleep studies, but not as a solo test. You might ask what they would be looking for on the EEG. It's not like it's painful or invasive, but if you are paying part of the bill, it might be a chunk of change. And I personally don't believe in doing unnecessary testing, regardless of who's paying for it. > > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > > To: Neurosarcoidosis > From: topdat1@... > Date: Tue, 28 Sep 2010 12:19:02 -0500 > Subject: Re: Re : neourosarc???? > > > > > > > > Hi Tim, Lumbar Punture is a necessary step in diagnosis.. They aren't trying to prove NS, it won't show that.. but it will rule out MS, I'm afraid a diagnosis of NS is usually consistant with ruling out other things, I've had probably 10-12 in my 10 years of NS.. EMG, also is necessary as it will show them hypersensitivity.. and or nerve damage.. I myself think both of these are a reasonable next thing to do. > > Hugs, > > NS-Moderator > > Re : neourosarc???? > > > > Ok well i was here some time back 8 months ago,, and have had to fight to get a Brain MRI with and without contrast ,, after 8 months guess what report came back after finding a neouro that would listen to me finally he was older but knew i was serious any way test came back and he calle me in and also had phone confrence with radiologist ,, they found that i had multi Granulomas on my brain consistent with sarcoid or M.S.? so myquestion whats next ok,,, neouro wants to do lumbar puncture and eeg,, emg legs feel like there heavy below knees in both legs nerves jump and spasm all day now so whats next any body give me some direction with this ok Please Tim In North Fl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 Tim, I know exactly how you feel with the weights on your legs, it is miserable.. do you have edema or fluid build up, this shall pass too, but they need to get all the adequate test before they can put you on treatment, after treatment it may take awhile to get you on the medication that works for you, most of us have tried different combination of drugs such as plaqunil, Imuran, Cellcept, Remicaide, Neurotin.. depends on your doctor and your symptoms. I was on Imuran for 8 years, and did very well, I am now in remission and can tell ya, I just about feel normal.. but its trial and error to get the medication correct just bare with your doctor.. I agree with Rose it does sounds like your in good hands with your doctor, there is a Sarcoid specialist in Ohio, that some of our members have seen and have gotten the treatment they needed due to their doctors being unwilling to treat them properly.. A EMG is a nerve conduction test to see if there is any nerve damage, if for some reason that it might become entraped, which it can do.. The LP the last few I have they let you up after the tap, to go home, they tell you to go home and rest, and drink lots of fluids, but you are home by the end of day. Some times with a spinal tap, the fluid can start leaking after the test, at that point you have to go back to the ER and get what they call a blood patch, I've never had one so I can't really tell ya about it from personal experience. I think the symptom of the leak is a horrible headache.. but if you do as they say you should be ok.. and I agree with Rose.. I don't believe in excessive un needed testing I absolutely hate Medicare fraud.. because a few people taking the system for a ride the ones that need it can't get the care they need.. , NS-Mod Re : neourosarc????> > > > Ok well i was here some time back 8 months ago,, and have had to fight to get a Brain MRI with and without contrast ,, after 8 months guess what report came back after finding a neouro that would listen to me finally he was older but knew i was serious any way test came back and he calle me in and also had phone confrence with radiologist ,, they found that i had multi Granulomas on my brain consistent with sarcoid or M.S.? so myquestion whats next ok,,, neouro wants to do lumbar puncture and eeg,, emg legs feel like there heavy below knees in both legs nerves jump and spasm all day now so whats next any body give me some direction with this ok Please Tim In North Fl> Quote Link to comment Share on other sites More sharing options...
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