Aa
Where do I go now
Hi where do I go now, i got this from my neurologist. Since receiving it, I have sent a reply with my symptoms, which are poor balance, cannot walk far, my bladder stopped working now using catheter, tingling in hands and feet, and electric shocks anywhere in body.
I am seeing neurologist in clinic shortly, what should I be asking. Your bladder does not give up for no reason. When I saw neurologist, he was convinced I had MS.
Can someone assist me, thanks
I now have the final results from your spinal fluid and this has shown no evidence of an inflammatory process with your nervous system. In particular you do not have the pattern of antibodies in the spinal fluid that we expect to see in multiple sclerosis.
The electrical tests on your sensory and optic nerves done at Hertford County Hospital in February were also normal. There was no slowing of conduction in your left optic nerve which would be the usual finding after an episode of optic neuritis associated with MS.
These results are reassuring in conjunction with the normal MR scans of your brain and spinal cord these findings mean that we have no positive evidence to suggest a diagnosis of multiple sclerosis. This is not an unusual situation, since we see many people with symptoms quite similar to those of MS, but with negative findings on all the appropriate investigations. It is frustrating to be left in a grey area, with no clear diagnosis but the important positive point is that people in this situation have a much better long term prognosis than those who have positive tests indicative of MS. This goes along with the fact that you have had intermittent symptoms for six years now without developing any objective clinical signs of a serious neurological condition.
I do not think there is much more I can add by seeing you again in my clinic in the immediate future. It would be helpful if you could write and let me know whether there have been any changes in your symptoms since I last saw you in December. For example if you are still having some difficulties with bladder control we may need to arrange some further investigation of the function of your bladder in the urology department.
I am seeing neurologist in clinic shortly, what should I be asking. Your bladder does not give up for no reason. When I saw neurologist, he was convinced I had MS.
Can someone assist me, thanks
I now have the final results from your spinal fluid and this has shown no evidence of an inflammatory process with your nervous system. In particular you do not have the pattern of antibodies in the spinal fluid that we expect to see in multiple sclerosis.
The electrical tests on your sensory and optic nerves done at Hertford County Hospital in February were also normal. There was no slowing of conduction in your left optic nerve which would be the usual finding after an episode of optic neuritis associated with MS.
These results are reassuring in conjunction with the normal MR scans of your brain and spinal cord these findings mean that we have no positive evidence to suggest a diagnosis of multiple sclerosis. This is not an unusual situation, since we see many people with symptoms quite similar to those of MS, but with negative findings on all the appropriate investigations. It is frustrating to be left in a grey area, with no clear diagnosis but the important positive point is that people in this situation have a much better long term prognosis than those who have positive tests indicative of MS. This goes along with the fact that you have had intermittent symptoms for six years now without developing any objective clinical signs of a serious neurological condition.
I do not think there is much more I can add by seeing you again in my clinic in the immediate future. It would be helpful if you could write and let me know whether there have been any changes in your symptoms since I last saw you in December. For example if you are still having some difficulties with bladder control we may need to arrange some further investigation of the function of your bladder in the urology department.
Hi--
I'm sorry you find yourself further without answers, especially in light of such strong symptoms. That's hard.
I have to second what Nancy said--- hold on to this doc!-- even if you need to ask for referrals to MS or other specialists, make sure they are people HE knows and respects. What a thoughtful, insightful, caring response.
Best,
Sadie
I'm sorry you find yourself further without answers, especially in light of such strong symptoms. That's hard.
I have to second what Nancy said--- hold on to this doc!-- even if you need to ask for referrals to MS or other specialists, make sure they are people HE knows and respects. What a thoughtful, insightful, caring response.
Best,
Sadie
Ah Nancy, that is such a lovely post. Basically six years ago I had problems with my legs and arms, had MRI nothing showed, then the symptoms disappeared.
Two years ago, I had the same problems and was diagnosed with Chronic Fatigue and Fibromyalgia. Then in Feb 2010, I had a blood test for thyroid and it showed high creatine levels, so then I had a bladder/kidney scan which showed that my bladder wasnt emptying properly, and I didnt really have the feeling that I needed to go. I have had many balance problems, tingling in hands and feet, weakness in left leg and hand, electric shocks moved around body, and extreme tiredness. So I had the MRI, as consultant was convinced I had inflamation of spinal cord, came back normal, then had VEP and lumber all came back normal.
I wrote back to him, stating I now had to have a bath lift, as couldnt get out of bath on my own. Had to have grab rails installed and new steps so I could get into house, and now use intermittent catherisation as bladder completly given up. He wrote back straight away and said he would see me again in clinic to do a detailed re-assessment and do some more blood tests to see if there was any inflamation in system..
When I see the consultant I will tell him about your lovely words. I am very lucky to have him, I didnt know if he would dismiss me as I have suffered from depression and anxiety for thirty years, but your bladder doesnt just give up for no reason.
Many thanks Nancy, I hope you are getting on okay, and wish you all the best.
Thank you again.
Two years ago, I had the same problems and was diagnosed with Chronic Fatigue and Fibromyalgia. Then in Feb 2010, I had a blood test for thyroid and it showed high creatine levels, so then I had a bladder/kidney scan which showed that my bladder wasnt emptying properly, and I didnt really have the feeling that I needed to go. I have had many balance problems, tingling in hands and feet, weakness in left leg and hand, electric shocks moved around body, and extreme tiredness. So I had the MRI, as consultant was convinced I had inflamation of spinal cord, came back normal, then had VEP and lumber all came back normal.
I wrote back to him, stating I now had to have a bath lift, as couldnt get out of bath on my own. Had to have grab rails installed and new steps so I could get into house, and now use intermittent catherisation as bladder completly given up. He wrote back straight away and said he would see me again in clinic to do a detailed re-assessment and do some more blood tests to see if there was any inflamation in system..
When I see the consultant I will tell him about your lovely words. I am very lucky to have him, I didnt know if he would dismiss me as I have suffered from depression and anxiety for thirty years, but your bladder doesnt just give up for no reason.
Many thanks Nancy, I hope you are getting on okay, and wish you all the best.
Thank you again.
Hi Alex
No it wasnt a MS specialist, I am pleased I told him about my new symptoms, as he now going to see me again.
thank you for your reply
No it wasnt a MS specialist, I am pleased I told him about my new symptoms, as he now going to see me again.
thank you for your reply
I know this is unsettling. There is no way you can be diagnosed with MS with all normal results. It does not mean you do not have MS it is just the way it is. There are other things which have these symptoms as well. Sometimes it takes awhile to sort out.
It is good you have an appointment at a Clinic. Is the Clinic MS? Was this neuro a MS Specialist. That makes a difference.
I would make a time line and keep a daily symptoms log. You do not have to present the whole thing just have it for reference.
Alex
It is good you have an appointment at a Clinic. Is the Clinic MS? Was this neuro a MS Specialist. That makes a difference.
I would make a time line and keep a daily symptoms log. You do not have to present the whole thing just have it for reference.
Alex
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"we have no positive evidence to suggest a diagnosis of multiple sclerosis. This is not an unusual situation, since we see many people with symptoms quite similar to those of MS, but with negative findings on all the appropriate investigations. It is frustrating to be left in a grey area, with no clear diagnosis"
With the above, he is acknowledging and validating the reality of your situation--no proof of MS, yet there are many people in your same situation. He does not negate your symptoms, does not dismiss them (and offers later to continue working on the problematical ones), and clearly understands the patient's frustration with this situation.
"but the important positive point is that people in this situation have a much better long term prognosis than those who have positive tests indicative of MS. This goes along with the fact that you have had intermittent symptoms for six years now without developing any objective clinical signs of a serious neurological condition."
With the above, he is stressing the positive and telling you the hopeful fact that your prognosis is better than if you had positive tests and objective clinical signs.
If you substituted "twelve years" for "six years" above, I am in the exact same situation (except that I did have an abnormal BAER and never had a VEP or a successful spinal tap, so those results remain unknown). I only wish I had a neurologist who would have so intelligently summarized and so kindly acknowledged my situation as yours did.
And yours even wanted you to continue telling your symptoms and getting help for them. Wow. Usually doctors don't want to hear anymore, once they've made their mind up.
Your doctor is a RARE GEM, and you should hold on to this smart and compassionate neuro who is so willing to help you.
As for what you should do next... I don't know your history and problems, but I would suggest to just continue documenting your symptoms--while still living your life as best you can and asking for any necessary SYMPTOMATIC relief for your bladder and other problems that significantly disrupt your life.
I am now only just occasionally reading a few posts on this board, but I'm SO glad I read yours, because the way your neurologist encapsulated and acknowledged your diagnostic situation is so excellent that it made ME feel good even though it's not my neuro. Would you please tell him thank you from a patient he doesn't even know. I will probably type up his statements above and pull it out to read whenever I feel discouraged. :)
I wish you the very best of luck!
Nancy T.