Aa
Spinal tap results are in!
My spinal tap came back normal. So, for now we "watch & monitor" and reimage the brain etc at regular intervals to see how things progress. There will be treatment of symptoms as needed.
No sure how I feel about this, but I will continue on dealing with all of it.
Chrisy
No sure how I feel about this, but I will continue on dealing with all of it.
Chrisy
To Pastor Dan:
I didn't always have this attitude towards the limbo stuff, I guess because now I have had some time my attitude has changed but in the early days I was so frustrated and angry for not knowing what I was dealing with, I think I needed it validated for me to cope better.
I thought this would allow me to adjust to what life throws at us but nothing in life is certain.
When I had my first attack I was told that although they couldn't accurately predict the course of MS that the future was not looking so bright, I could barely walk, DMDs were new and my neurologist at the time wanted me to have them but I didn't meet the laboratory supported criteria. He was planning to put me on them with one lesion if it would show up. I flew over seas and got a second opinion and was told too that it was indeed most likely MS.
Now obviously I did have a single demylination episode, nobody is disputing that, possibly two but only involving the spinal cord, although my old neuro did say I had optic neuritis as well. I have decided to cross bridges when you come to them, I stopped worrying years ago, it flared up and I thought yep this is getting worse, I seeked out a new neuro who is lovely to get another opinion, he said he can understand why the old neuro thought MS. MS is not an easy thing to diagnose and this neuro back then would have prob thought the same but he has time now on his side.. (how long I have been going) mind you my friends mum had her first attack of ON when she was 20 then had her next MS attack when she was 40. So it can happen.
I figure that my neuro is monitoring me, he is doing regular checkups and MRIs. I have seen him 8 times in the last two years, if it is MS, which he thinks it is unlikely or if my TM is reoccuring (he is a bit suspicious of that) we can tackle it then. I too want treatment if MS is indeed what I have.
If you have a good neurologist, trust them, or find a good one, ask them your questions, if they are checking you they will know if you are getting worse with the regular neuro exams and MRI. I am happy that I am still be monitored (just in case).
On the headaches it is difficult and I still have more questions next time I go to the neuro on this subject. As vertigo and blurry vision, numbness, tingling etc. all seem to be part of both my symptoms.. but if you read Quix's thing on what's MS and what's not it kinda explains what the neuro told me when I was trying to work out what was headaches and what isn't. B.T. W. i rarely get headpain. Also I posted on the bottom of "my neuro is awesome" about headaches and what he said too.
I think what helps me most is having a neuro that answers all my questions. He is indeed lovely, kind enough to help me with my non neuro stuff too.
News just to hand my old neuro was tragically killed in a ski accident in New Zealand. See nothing in life is certain! It will be a great loss to our community as he was the only neurologist in our area. I feel for his family and his patients. I see a different neuro but I have to travel 3 hours to see him.
Chrisy if you are being monitored when timing is right they will give you DMDs but if you were to have them and it's not MS then they are pretty powerful drugs. I used to worry about the future but see none of us can predict.
Chrisy your neuro sounds great, take faith in the fact that they are supporting you.
Cheers,
Udkas.
I didn't always have this attitude towards the limbo stuff, I guess because now I have had some time my attitude has changed but in the early days I was so frustrated and angry for not knowing what I was dealing with, I think I needed it validated for me to cope better.
I thought this would allow me to adjust to what life throws at us but nothing in life is certain.
When I had my first attack I was told that although they couldn't accurately predict the course of MS that the future was not looking so bright, I could barely walk, DMDs were new and my neurologist at the time wanted me to have them but I didn't meet the laboratory supported criteria. He was planning to put me on them with one lesion if it would show up. I flew over seas and got a second opinion and was told too that it was indeed most likely MS.
Now obviously I did have a single demylination episode, nobody is disputing that, possibly two but only involving the spinal cord, although my old neuro did say I had optic neuritis as well. I have decided to cross bridges when you come to them, I stopped worrying years ago, it flared up and I thought yep this is getting worse, I seeked out a new neuro who is lovely to get another opinion, he said he can understand why the old neuro thought MS. MS is not an easy thing to diagnose and this neuro back then would have prob thought the same but he has time now on his side.. (how long I have been going) mind you my friends mum had her first attack of ON when she was 20 then had her next MS attack when she was 40. So it can happen.
I figure that my neuro is monitoring me, he is doing regular checkups and MRIs. I have seen him 8 times in the last two years, if it is MS, which he thinks it is unlikely or if my TM is reoccuring (he is a bit suspicious of that) we can tackle it then. I too want treatment if MS is indeed what I have.
If you have a good neurologist, trust them, or find a good one, ask them your questions, if they are checking you they will know if you are getting worse with the regular neuro exams and MRI. I am happy that I am still be monitored (just in case).
On the headaches it is difficult and I still have more questions next time I go to the neuro on this subject. As vertigo and blurry vision, numbness, tingling etc. all seem to be part of both my symptoms.. but if you read Quix's thing on what's MS and what's not it kinda explains what the neuro told me when I was trying to work out what was headaches and what isn't. B.T. W. i rarely get headpain. Also I posted on the bottom of "my neuro is awesome" about headaches and what he said too.
I think what helps me most is having a neuro that answers all my questions. He is indeed lovely, kind enough to help me with my non neuro stuff too.
News just to hand my old neuro was tragically killed in a ski accident in New Zealand. See nothing in life is certain! It will be a great loss to our community as he was the only neurologist in our area. I feel for his family and his patients. I see a different neuro but I have to travel 3 hours to see him.
Chrisy if you are being monitored when timing is right they will give you DMDs but if you were to have them and it's not MS then they are pretty powerful drugs. I used to worry about the future but see none of us can predict.
Chrisy your neuro sounds great, take faith in the fact that they are supporting you.
Cheers,
Udkas.
In answer to your question about relapses vs. good & bad days - well I have had at least 2 very distinct relapses- the first lasted for about a month (dizziness, burning pain, fatigue), the second lasted for about 2 weeks, severe fatigue, vertigo, burning/tingling etc. But then some of my other symptoms come in what I have termed "mini-relapses", where I may have a bunch of symptoms for a week or more, then they will go away and I may be fine for a month or so.
So I am not really sure if this answers your question.
I hope you are hanging in there yourself.
Hugs,
Chrisy
So I am not really sure if this answers your question.
I hope you are hanging in there yourself.
Hugs,
Chrisy
Hi there.. I have been in that place for 4 years and finally out of Limbo... do you have relapes and remissions? Or are your symptoms pretty well there most of the time and good and bad days?
Its good that you are getting med for your symptoms, that helps.
take care
wobbly
dx
Its good that you are getting med for your symptoms, that helps.
take care
wobbly
dx
Chrisy, I have your same concerns, a lot of the time, about what might happen. It helps me to look back at myself as little as five years ago, and ask myself what I feared then might happen by now. One thing I can certainly say is that I would never have pictured myself in today's circumstances. It follows that I cannot today guess where I will be in five more years. Consequently, though I try to plan responsibly, I must leave the concern to God. He's the only One who knows for certain what I will face this evening.
Udkas, I love your approach, but considering my own case, this is my question: How do we differentiate the migraine symptoms from those of MS? If I have dizziness, double vision, blurred vision, hazy vision, vibrating sensations, etc., etc., how can I be sure if it's migraine, MS, or something else altogether? I'm with Chrisy in this regard, that if I have something wrong, and there is treatment that promises to help keep it from getting worse, I want it. However, I need to know which to apply; Copaxone probably wouldn't do a thing for migraine, nor would Topamax likely work for MS.
Udkas, I love your approach, but considering my own case, this is my question: How do we differentiate the migraine symptoms from those of MS? If I have dizziness, double vision, blurred vision, hazy vision, vibrating sensations, etc., etc., how can I be sure if it's migraine, MS, or something else altogether? I'm with Chrisy in this regard, that if I have something wrong, and there is treatment that promises to help keep it from getting worse, I want it. However, I need to know which to apply; Copaxone probably wouldn't do a thing for migraine, nor would Topamax likely work for MS.
I am feeling better today. At this point, given what my neuro has said & what I think based on my symptoms - I believe that I have MS. There may not be enough clinical evidence to "officially" diagnose me, but since my neuro is willing to treat my symptoms - I guess it doesn't really matter if it is "official" or not.
I guess I worry about not being on DMD's and what that may mean for the future. But then again, I have no way of knowing if this will ever become any more severe than it is right now...
So I guess I just need to stop thinking about what "might" happen in the future, and take care of myself right now. (that is easier said than done)
Thank you both for your support & your input - that is why I love this place - I honestly don't know what I would do without this forum.
Hugs,
Chrisy
I guess I worry about not being on DMD's and what that may mean for the future. But then again, I have no way of knowing if this will ever become any more severe than it is right now...
So I guess I just need to stop thinking about what "might" happen in the future, and take care of myself right now. (that is easier said than done)
Thank you both for your support & your input - that is why I love this place - I honestly don't know what I would do without this forum.
Hugs,
Chrisy
Eventually maybe limbo land gets easier. For me a name is a name, it would be nice to have one, but I am glad I have a DR like yours, not my Neuro, but she is my FP and always believes me and treats symptoms. So that is good for you.
Under www.InvisibleDisabilities.org there is some wonderful info. One thing is a booklet "But You LOOK Good!" That has helped me.
I agree with Udkas, let them take care of the rotten "fruit" why should we care what they think. You know your body, as I think we all do and we know it isn't right name or no name.
Hugs,
Tracy
Under www.InvisibleDisabilities.org there is some wonderful info. One thing is a booklet "But You LOOK Good!" That has helped me.
I agree with Udkas, let them take care of the rotten "fruit" why should we care what they think. You know your body, as I think we all do and we know it isn't right name or no name.
Hugs,
Tracy
Hi Chrisy,
I can understand you feeling discouraged, because I have gone through similar emotions loads of times, but have decided lately that limbo is not such a bad place to be if you have a good neurologist and from what you tell me you do.
Years ago I was told I had clinically probable MS on the basis that I had experienced two attacks that involved separate parts of the CNS and clinical evidence of one lesion. In fact when I was put in hospital I was told it was MS but when the MRI and LP didn't confirm it was probable MS.
Well 13 years has now passed and I have never progressed too far past that initial stage, I still have symptoms that come and go etc. Current neurologist believes I had single episode of Transverse Myelitis that has perhaps reoccured recently and this is complicated by the fact that I also suffer from migraines that cause symptoms that are similar in nature to my TM symptoms (like tingling, numbness, electric shocks etc...
What I am trying to say is that if you have a Dr who believes you, who is willing to monitor your symptoms and progress, support you both emotionally and with medicine to help manage your symptoms that is better than a Dr who diagnoses you with something you MAY NOT HAVE!
It's like I know I have the evidence of damage on exam but I don't on the pictures of my spine..lol, I don't need it documented anymore, my neuro is treating me the same as he would if I had pictures lighting up, he says the lesions are there, but technology is not good enough yet for spinal cord imaging, but he is still watching me just in case it progresses and the action plan needs to change etc. He does not think I have MS but he refers to it as TM. A good neuro help us cope emotionally better with the weird things and frustration of what is going on with out bodies.
I used to feel like I wanted an answer so much, I used to think if I had spots on my MRI i would be happy but now I think well while there is not enough evidence to diagnose it's a good thing. Just on my migraine symptoms alone if someone heard them they would think I had MS.
I hope now I am in limbo forever, my Dr is managing my symptoms well, even my non neurological ones. :-) Be grateful for now that your tests are good and hope that it doesn't progress. ( I don't mean that in a harsh way) been there!
Thinking of you,
understanding how you feel, i used to cry when I had a normal MRI i was worried people would think I was making my symptoms up, Now I am older and wiser I don't give a fruit what other's think!
Cheers,
Udkas.
Sorry for the rant.
I can understand you feeling discouraged, because I have gone through similar emotions loads of times, but have decided lately that limbo is not such a bad place to be if you have a good neurologist and from what you tell me you do.
Years ago I was told I had clinically probable MS on the basis that I had experienced two attacks that involved separate parts of the CNS and clinical evidence of one lesion. In fact when I was put in hospital I was told it was MS but when the MRI and LP didn't confirm it was probable MS.
Well 13 years has now passed and I have never progressed too far past that initial stage, I still have symptoms that come and go etc. Current neurologist believes I had single episode of Transverse Myelitis that has perhaps reoccured recently and this is complicated by the fact that I also suffer from migraines that cause symptoms that are similar in nature to my TM symptoms (like tingling, numbness, electric shocks etc...
What I am trying to say is that if you have a Dr who believes you, who is willing to monitor your symptoms and progress, support you both emotionally and with medicine to help manage your symptoms that is better than a Dr who diagnoses you with something you MAY NOT HAVE!
It's like I know I have the evidence of damage on exam but I don't on the pictures of my spine..lol, I don't need it documented anymore, my neuro is treating me the same as he would if I had pictures lighting up, he says the lesions are there, but technology is not good enough yet for spinal cord imaging, but he is still watching me just in case it progresses and the action plan needs to change etc. He does not think I have MS but he refers to it as TM. A good neuro help us cope emotionally better with the weird things and frustration of what is going on with out bodies.
I used to feel like I wanted an answer so much, I used to think if I had spots on my MRI i would be happy but now I think well while there is not enough evidence to diagnose it's a good thing. Just on my migraine symptoms alone if someone heard them they would think I had MS.
I hope now I am in limbo forever, my Dr is managing my symptoms well, even my non neurological ones. :-) Be grateful for now that your tests are good and hope that it doesn't progress. ( I don't mean that in a harsh way) been there!
Thinking of you,
understanding how you feel, i used to cry when I had a normal MRI i was worried people would think I was making my symptoms up, Now I am older and wiser I don't give a fruit what other's think!
Cheers,
Udkas.
Sorry for the rant.
I am more discouraged than I thought I would be - I don't want MS, but I do want an answer & I feel like I am back in limbo..or maybe I never really left...?..
So, trying to stay focused on the good - a good neurologist, a plan and hopefully some successful treatment of my symptoms.
Hugs,
Chrisy
So, trying to stay focused on the good - a good neurologist, a plan and hopefully some successful treatment of my symptoms.
Hugs,
Chrisy
Chrisy, at least your neuro is treating the symptoms and going to do regular rechecks. That is very important -
hang in there,
Lulu
hang in there,
Lulu
I do have one lesion on my brain - in the corpus collasum. The MS neuro is "highly suspicious" that I have MS...but wants more evidence. That is why she wants to wait to see how things progress.
Hope yours is normal too!
Hugs,
Chrisy
Hope yours is normal too!
Hugs,
Chrisy
chrisy - that is good news. i am glad it was clean and normal. i just had my LP on friday and am hoping for that. what are your symptoms - abnormal MRI? i might be on the same path as you if my LP is clean....waiting and seeing with testing at regular intervals - i am at peace with that.
enjoy the good news!
R
enjoy the good news!
R
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
