Aa
MRI results normal, now what?
I just got the results of my first MRI and it was normal.
So now I am not sure what to do as far as figuring out my problem. I just want to feel better again. The doctors do not know what is wrong with me and just keep sending me to different specialists.
Are there more tests I should do to rule out MS or should I just take a wait and see approach to the whole thing? I am tired of going from doctor to doctor.
So now I am not sure what to do as far as figuring out my problem. I just want to feel better again. The doctors do not know what is wrong with me and just keep sending me to different specialists.
Are there more tests I should do to rule out MS or should I just take a wait and see approach to the whole thing? I am tired of going from doctor to doctor.
Thank you so much! It does seem like this is the only place people do really understand and know how hard it all is. My husband tries very hard but I feel so guilty for not feeling good enough to do the things I should be doing. I feel like he is getting very frustrated with the situation. I always think, he is going to get tired of this and not be able to handle it anymore soon! We have four children together and there is a LOT to do around here. I know he loves me but how much can one person take?
I have no escape from this. I don't sleep at all lately! I think that is the worst part. I get up feeling like I have been beaten everyday. The fatigue and weakness are overwhelming sometimes. I could just lay down and not move all day if that was possible.
I am just going on and on. Sorry, I guess I do need to vent! You are great to listen and respond!
My next appt is on the 20th with an Endo Specialist, because my cardiologist thought maybe I have a gland problem. I have been on medication for my thyroid (hypo-thyroid) for years. So we will see. I don't really think that is my problem though. Then I don't have anything else scheduled now and plan to keep it that way a while.
I will stay in touch.
Wish you well!
I have no escape from this. I don't sleep at all lately! I think that is the worst part. I get up feeling like I have been beaten everyday. The fatigue and weakness are overwhelming sometimes. I could just lay down and not move all day if that was possible.
I am just going on and on. Sorry, I guess I do need to vent! You are great to listen and respond!
My next appt is on the 20th with an Endo Specialist, because my cardiologist thought maybe I have a gland problem. I have been on medication for my thyroid (hypo-thyroid) for years. So we will see. I don't really think that is my problem though. Then I don't have anything else scheduled now and plan to keep it that way a while.
I will stay in touch.
Wish you well!
Well I agree with everything Christine had to say and just have a few things to add.
I believe that you have to have a referral from your pcp in order to see an MS Specialist. You can check out your local MS Society chapter and they usually have a list of MS Specialists. You could even get a list of doctors from them and call them yourself and see if you need a referral from your pcp.
As for your family not understanding...this is a problem that a lot of us have to face while living in limbo land between symptoms and a diagnosis. This is also where your local MS Society chapter can help you out. They can provide you with pamphlets on MS for your family to read and if you are just in need of support yourself that your family can't seem to provide at the moment, the National MS Society has support groups and people you can just call if you need to talk! Look it up on your computer and I am sure you won't be disappointed once you find these groups.
It seems like it is a full time job trying to get a diagnosis, especially when we are not feeling well and having troube finding support. Please know that we are here for you and also please understand that the majority (unfortunately) have been in your position so we can empathize with you and help you through the rough spots! Please stay in touch even while you are taking a break...we are here 24/7
Lots of Hugs,
Rena
I believe that you have to have a referral from your pcp in order to see an MS Specialist. You can check out your local MS Society chapter and they usually have a list of MS Specialists. You could even get a list of doctors from them and call them yourself and see if you need a referral from your pcp.
As for your family not understanding...this is a problem that a lot of us have to face while living in limbo land between symptoms and a diagnosis. This is also where your local MS Society chapter can help you out. They can provide you with pamphlets on MS for your family to read and if you are just in need of support yourself that your family can't seem to provide at the moment, the National MS Society has support groups and people you can just call if you need to talk! Look it up on your computer and I am sure you won't be disappointed once you find these groups.
It seems like it is a full time job trying to get a diagnosis, especially when we are not feeling well and having troube finding support. Please know that we are here for you and also please understand that the majority (unfortunately) have been in your position so we can empathize with you and help you through the rough spots! Please stay in touch even while you are taking a break...we are here 24/7
Lots of Hugs,
Rena
oh and feel free to send me a message if you ever just want to b**ch :) I'm happy to listen :)
Christine
Christine
Weather or not you need a referral depends on where you are. I'm in Canada, and therefor need a referral to ANY specialist. As for the states and their individual laws, I have no clue, I'm sorry.
It just so happens that in MY province I can name a specialist I want to see. So the specialist I asked for this last time, happens to be a regular neurologist AND an MS Specialist.
I understand about the discouragment, and wanting to get one's head together. I'm so sorry it's all so overwhelming. I truley understand. I have found that taking a hiatus from it all gives me a chance to centralize myself, and get my emotional strength back. Not to mention the finacial recouperation (I'm blessed with not having to worry about this in Canada, but I can imagine it would all get very costly, very very quickly).
I'm sorry it's so frustrating. Would that I could, there would be a blood test for every disease, so that one blood sample (or even some sort of scan) and they'd know what was wrong with us.
Try and keep your chin up as much as possible. I know it's easier said than done, trust me I know, but all we can do is laugh whenever we can, right?
Christine
It just so happens that in MY province I can name a specialist I want to see. So the specialist I asked for this last time, happens to be a regular neurologist AND an MS Specialist.
I understand about the discouragment, and wanting to get one's head together. I'm so sorry it's all so overwhelming. I truley understand. I have found that taking a hiatus from it all gives me a chance to centralize myself, and get my emotional strength back. Not to mention the finacial recouperation (I'm blessed with not having to worry about this in Canada, but I can imagine it would all get very costly, very very quickly).
I'm sorry it's so frustrating. Would that I could, there would be a blood test for every disease, so that one blood sample (or even some sort of scan) and they'd know what was wrong with us.
Try and keep your chin up as much as possible. I know it's easier said than done, trust me I know, but all we can do is laugh whenever we can, right?
Christine
I have not seen an MS specialist, just a neurologist. She did do an exam but it was not thirty minutes, maybe 10-15 at best. The only thing she saw was that I have hyper-reflexes, but she did not seem concerned about that. Do you know if my neurologist has to refer me to a MS specialist or can I just make an appt myself?
I think I will take a break for a couple of months and try to get my head together. I have been so discouraged about everything. My insurance would not even pay to have the contrast so my MRI was done without it and my co-pays on tests are 100.00. That adds up really quick!
Thank you so much for the support. It is so hard because I feel like my family does not understand. They just want me to get better. Well I want that to, I mean I wake up everyday telling myself today is going to be better. I will make it better. Then most days by midafternoon, I am in tears.
I will keep you posted. Thank you again!
I think I will take a break for a couple of months and try to get my head together. I have been so discouraged about everything. My insurance would not even pay to have the contrast so my MRI was done without it and my co-pays on tests are 100.00. That adds up really quick!
Thank you so much for the support. It is so hard because I feel like my family does not understand. They just want me to get better. Well I want that to, I mean I wake up everyday telling myself today is going to be better. I will make it better. Then most days by midafternoon, I am in tears.
I will keep you posted. Thank you again!
I agree with Christine! I you have not seen an MS Specialist...then this is the most important dr. to see when seeking a diagnosis for MS symptoms.
You have your MRI done so once you see the MS Specialist it will be available for the dr. to read. You see, an MS Specialist is trained to see things on an MRI that a regular Neurologist or a Radiologist is not and the specialist has the experience to discern any irregularities that they are not able to.
An MS Specialist will need a FULL History from you which is why a timeline is so important. You should always keep a timeline or diary from which you can make a timeline if need be. There is a post on how a timeline should be done and I will try to find it for you and bump it up!
An MS Specialist is also able to perform an in office examination that is incredibly thorough and will tell the doctor about your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. An exam such as this should last at least 1/2 hour or more and if it doesn't, question the specialist as to why a full examination isn't being done!
An MS Specialist will have looked at your MRI and if it is inconclusive and your symptoms are still pointing towards an MS diagnosis he/she will order a Lumbar Puncture. During this procedure, a small amount of spinal fluid is drawn out to be tested for Oligloconal Banding which would mean an MS diagnosis. This fluid is also tested for a myriad of other diseases.
If the Lumbar Puncture is inconclusive, you may possibly have Evoked Potential testing which is the final testing done when searching for an MS diagnosis.
So you can see why seeing an MS Specialist is so important if you are presenting with symptoms of MS and you are searching for a diagnosis.
I wish you luck in your search for a diagnosis and I hope that you stay in touch and let us know how you are doing! You may be surprised at how supportive the people on this Forum are and we are here 24/7 for you! Take Care and Keep in Touch!
Lots of Hugs,
Rena
You have your MRI done so once you see the MS Specialist it will be available for the dr. to read. You see, an MS Specialist is trained to see things on an MRI that a regular Neurologist or a Radiologist is not and the specialist has the experience to discern any irregularities that they are not able to.
An MS Specialist will need a FULL History from you which is why a timeline is so important. You should always keep a timeline or diary from which you can make a timeline if need be. There is a post on how a timeline should be done and I will try to find it for you and bump it up!
An MS Specialist is also able to perform an in office examination that is incredibly thorough and will tell the doctor about your mental status, cranial nerves, motor skills, coordination and gait, reflexes and senses. An exam such as this should last at least 1/2 hour or more and if it doesn't, question the specialist as to why a full examination isn't being done!
An MS Specialist will have looked at your MRI and if it is inconclusive and your symptoms are still pointing towards an MS diagnosis he/she will order a Lumbar Puncture. During this procedure, a small amount of spinal fluid is drawn out to be tested for Oligloconal Banding which would mean an MS diagnosis. This fluid is also tested for a myriad of other diseases.
If the Lumbar Puncture is inconclusive, you may possibly have Evoked Potential testing which is the final testing done when searching for an MS diagnosis.
So you can see why seeing an MS Specialist is so important if you are presenting with symptoms of MS and you are searching for a diagnosis.
I wish you luck in your search for a diagnosis and I hope that you stay in touch and let us know how you are doing! You may be surprised at how supportive the people on this Forum are and we are here 24/7 for you! Take Care and Keep in Touch!
Lots of Hugs,
Rena
Have you seen an MS Specialist? Or just a regular neurologist?
I certainly understand being tired of seeing every "ologist" on the planet. I too am undiagnosed, and have been looking for answers for 2.5 years thus far.
Personally, I have found there are times when I just need to step back, and take a rest from looking. Sometimes it's a week, sometimes it's 3 or 4 months, but it certainly helps me gain perspective and have a little rest from it all.
If you haven't seen an MS Specialist, I would recommend doing so. A clear MRI doesn't always mean no MS, sometimes lesions can be too small to be seen, or hide between slices. But there are also alot of "the great imitators" out there. An MS Specialist would be best suited to sorting that out.
I hope you feel better soon, and get some answers.
Christine
(un-dx)
I certainly understand being tired of seeing every "ologist" on the planet. I too am undiagnosed, and have been looking for answers for 2.5 years thus far.
Personally, I have found there are times when I just need to step back, and take a rest from looking. Sometimes it's a week, sometimes it's 3 or 4 months, but it certainly helps me gain perspective and have a little rest from it all.
If you haven't seen an MS Specialist, I would recommend doing so. A clear MRI doesn't always mean no MS, sometimes lesions can be too small to be seen, or hide between slices. But there are also alot of "the great imitators" out there. An MS Specialist would be best suited to sorting that out.
I hope you feel better soon, and get some answers.
Christine
(un-dx)
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