Re: iam am convinced that i have ms but neurologist doesn't belive me
HI. Unfortunately that doesnt leave you too many choices. The disease of MS presents like over 400 different diseases, so if your Neuro thinks its NOT MS, what DOES he think it is? It honestly could be one of any of the 400...
MS is very hard to diagnose. There is criteria, called the revised McDonald Criteria, which a Neurologist must meet, in order to label someone with MS. You should read up on it and see if you meet that criteria, or at the very least, have had the right tests....
And, if all else fails, find a second opinion. Realizing its not that simple in your healthcare system, you can stil find a second neurologist to either agree or disagree with the first.
If you would like to share with us what symtoms you are having, what tests you have had and the results, we can offer you our opinions on whether or not we think more testing is suggested...but we arent doctors, so all we can do is listen and help you cope with symtoms....many people have had to switch docs several times finding one they were comfortable with. You wouldnt be the first....but did you ask him if its not MS, what he DOES think it is? Id be curious to hear that answer.
Re: iam am convinced that i have ms but neurologist doesn't belive me
Quote:
Originally Posted by MSNik
HI. Unfortunately that doesnt leave you too many choices. The disease of MS presents like over 400 different diseases, so if your Neuro thinks its NOT MS, what DOES he think it is? It honestly could be one of any of the 400...
MS is very hard to diagnose. There is criteria, called the revised McDonald Criteria, which a Neurologist must meet, in order to label someone with MS. You should read up on it and see if you meet that criteria, or at the very least, have had the right tests....
And, if all else fails, find a second opinion. Realizing its not that simple in your healthcare system, you can stil find a second neurologist to either agree or disagree with the first.
If you would like to share with us what symtoms you are having, what tests you have had and the results, we can offer you our opinions on whether or not we think more testing is suggested...but we arent doctors, so all we can do is listen and help you cope with symtoms....many people have had to switch docs several times finding one they were comfortable with. You wouldnt be the first....but did you ask him if its not MS, what he DOES think it is? Id be curious to hear that answer.
Welcome to the boards...
Nikki
Hi Nikki, firstly many thanks for the warm welcome. After having read the various posts on your site it is refreshing to no longer feel that I am going insane.
I am experiencing many symptoms at varying times, they are mostly :- headaches behind my left eye (sometime my pupils seem to be different sizes), strange tingling in my arms and legs (especially left side), extreme discomfort around hips/lower back, legs buckling under me when walking, inability to move my left foot at all, extreme fatigue and mood swings and a need to go to the toilet a lot more. Oh and also my memory is like swiss cheese at the mo and my speech becomes slurry and stuttery when i am tired. I am sure that i have forgotten some as well, but will let you know if i remeber.
My GP initially, three years ago, said this was all in my head and made me do push ups on his consulting room floor (and then proceeded to tell my wife in a busy waiting room that i was "a nutter". I now have a new GP at the same practice who is a lot more understaning. My neurologist bases his opinion on a negative MRI taken over a year ago of my head and cervical spine (without contrast). After much badgering by my GP I saw my neurologist again yesterday, after looking at the original scan again he stands by his opinion and tried to refer me to a psychiatrist. I refused this referal and he finally agreed to repeat the MRI of head and cervical spine along with my lumbar spine. So lets see what happens now, although neuro says he is 99.9% sure that they will come back negative. Also had the evoked potentials tests a year ago which came back negative.
Through all of this I keep saying to people that I know my body and I know something is not right. I almost get the impression from the neuro that he thinks i actually want to have MS, I don't, believe me.
At the mo feeling desperate and angry, as have been unable to work since June and am married with 4 kids. Anyway sorry to ramble, but am feeling much more positive after reading the posts of your very wonderful members.
Re: i am convinced that i have ms but neurologist doesn't believe me
And so the story repeats. You could be speaking about me. I had no clue if I had MS or a brain tumor. After eight years, I had concluded it was MS. I sat with a neuro the last three years of hell. His dignosis..a pinched nerve in my neck. I had gone to him already using a wheelchair for shopping. I won't even go into the detail of the absolute humiliation of having to use one.
I stayed with the idiot because I had been to six other physicians (family doctor, internist, rheumatologist, vascular surgeon, etc.) all of which found either a little bit of arthritis or a bad disk. I knew the pain level was too high for any. I left when my right hand lost all strength.
Luckily, we ended up with a neuro that was attached to a major hospital. An MRI of both my spine and brain ran that very day. Next day I was in treatment for MS.
Don't sit. Be active. Find a doctor in a teaching hospital or a trauma center where they have the proper equipment to help you. I sit today with lesions on my brain stem making my breathing labored and swallowing difficult. How much more would I have lost witht he idiots of medicine? My life?
Re: iam am convinced that i have ms but neurologist doesn't belive me
Welcome! Does the neurologist specialize in MS? If he does and you are still getting the "run around", change to another neurologist. If he does not specialize in MS, change. The MS Society in the UK can help you locate a neurologist who is adept at meeting your needs.
It is good to hear that you found a different GP. Stay strong!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Last edited by MSJayhawk; 09-09-2010 at 06:22 AM.
Reason: add
Re: iam am convinced that i have ms but neurologist doesn't belive me
Keep searching! I had some symptoms of MS and I have had a 9 month journey and lots of negative blood tests, MRIs etc. Finally, with the halp of a good family DR I was sent to a rheumatologist who did a bone scan and found widespread Osteoarthritis especially in my cervical spine (at age 42) that is causing all of my symptoms (numbness, tingling, weakness, pain, etc). I had a negative cervical! MRI Just don't give up you have to be your own advocate. Keep checking in with your GP so that he/she can oversee the whole process. But also try to live as much of a normal life as is possible, love your family and perservere!
Re: iam am convinced that i have ms but neurologist doesn't belive me
Hi david83a
I live in the UK as well and I initally had problems getting anywhere with the neurologist at my local hospital. Fortunately my GP agreed with me and made appropriate appointments for me to see specalists who could run the correct tests and make sense of the results. I now see a neurologist at one of the best teaching hospitals in the country. Check with the MS society in your area and find out who the best neurologist is in your region and tell your GP to refer you to them. You are now allowed on the NHS to request referrals to speicalist and/or hospital in the country.
Good luck and stay strong and persistent to get the answers you need.
Re: i am convinced that i have ms but neurologist doesn't believe me
Has your neurologist done any tests on you--such as MRI's of your brain and spinal cord? Lots of disorders have similar symptoms to MS. I know, because my neurologist has been following my progression of symptoms for awhile.
Of course, if you are really not happy with this neurologist, then you can try for a second opinion.
Re: i am convinced that i have ms but neurologist doesn't believe me
Quote:
Originally Posted by Sumanadevii
And so the story repeats. You could be speaking about me. I had no clue if I had MS or a brain tumor. After eight years, I had concluded it was MS. I sat with a neuro the last three years of hell. His dignosis..a pinched nerve in my neck. I had gone to him already using a wheelchair for shopping. I won't even go into the detail of the absolute humiliation of having to use one.
I stayed with the idiot because I had been to six other physicians (family doctor, internist, rheumatologist, vascular surgeon, etc.) all of which found either a little bit of arthritis or a bad disk. I knew the pain level was too high for any. I left when my right hand lost all strength.
Luckily, we ended up with a neuro that was attached to a major hospital. An MRI of both my spine and brain ran that very day. Next day I was in treatment for MS.
Don't sit. Be active. Find a doctor in a teaching hospital or a trauma center where they have the proper equipment to help you. I sit today with lesions on my brain stem making my breathing labored and swallowing difficult. How much more would I have lost witht he idiots of medicine? My life?
Thanks so much for sharing your story with me. I am so glad that you finally found somebody to help you. It makes me feel stronger and more positive, and gives me the inspiration to keep fighting.
Last edited by david83a; 09-09-2010 at 10:28 AM.
Reason: text in wrong place, sorry.
Re: iam am convinced that i have ms but neurologist doesn't belive me
Quote:
Originally Posted by tiffin
Hi david83a
I live in the UK as well and I initally had problems getting anywhere with the neurologist at my local hospital. Fortunately my GP agreed with me and made appropriate appointments for me to see specalists who could run the correct tests and make sense of the results. I now see a neurologist at one of the best teaching hospitals in the country. Check with the MS society in your area and find out who the best neurologist is in your region and tell your GP to refer you to them. You are now allowed on the NHS to request referrals to speicalist and/or hospital in the country.
Good luck and stay strong and persistent to get the answers you need.
Tiffin
Thanks for very good advice Tiffin, I will get straight onto this. You and the other kind people who have responded to me are in inspiration.
Re: iam am convinced that i have ms but neurologist doesn't belive me
Quote:
Originally Posted by MSJayhawk
Welcome! Does the neurologist specialize in MS? If he does and you are still getting the "run around", change to another neurologist. If he does not specialize in MS, change. The MS Society in the UK can help you locate a neurologist who is adept at meeting your needs.
It is good to hear that you found a different GP. Stay strong!!
Thanks for the great advice, I know there must be good neurologists out there who can help me.
Re: iam am convinced that i have ms but neurologist doesn't belive me
Quote:
Originally Posted by Nummbie
Keep searching! I had some symptoms of MS and I have had a 9 month journey and lots of negative blood tests, MRIs etc. Finally, with the halp of a good family DR I was sent to a rheumatologist who did a bone scan and found widespread Osteoarthritis especially in my cervical spine (at age 42) that is causing all of my symptoms (numbness, tingling, weakness, pain, etc). I had a negative cervical! MRI Just don't give up you have to be your own advocate. Keep checking in with your GP so that he/she can oversee the whole process. But also try to live as much of a normal life as is possible, love your family and perservere!
I will follow your advice and persevere, and my family are what give me the strength to carry on. Glad you found some answers for your condition. Thanks for taking the time to talk.
Re: i am convinced that i have ms but neurologist doesn't believe me
David,
Sorry it took me so long to catch up. I just worked 36 hours straight. Everyone here gave you good advice. Especially your European friends who are mor familiar with the health system then I am. BUT in the end, the most important thing you said was that you KNOW something is wrong. Youre probably right; but we cant be sure its MS at this point..
The MRI can change week to week, so having looked at a year old scan, is actually only pointless, unless you are using it as a base line scan. Yeah, could have been normal then, but it could have changed the next week. Make sure that when those are repeated, they are done with and without contrast. Contrast will show the tiny lesions that might not show up otherwise.
Continue being your own advocate and know that we have TONS of support here for you.
You are never alone.
Nikki
Re: i am convinced that i have ms but neurologist doesn't believe me
Quote:
Originally Posted by MSNik
David,
Sorry it took me so long to catch up. I just worked 36 hours straight. Everyone here gave you good advice. Especially your European friends who are mor familiar with the health system then I am. BUT in the end, the most important thing you said was that you KNOW something is wrong. Youre probably right; but we cant be sure its MS at this point..
The MRI can change week to week, so having looked at a year old scan, is actually only pointless, unless you are using it as a base line scan. Yeah, could have been normal then, but it could have changed the next week. Make sure that when those are repeated, they are done with and without contrast. Contrast will show the tiny lesions that might not show up otherwise.
Continue being your own advocate and know that we have TONS of support here for you.
You are never alone.
Nikki
Thanks for your comments and support, that means a lot. Yes I will keep fighting.
Re: i am convinced that i have ms but neurologist doesn't believe me
Hi David,
Add me to the list of people who went through a long process to be diagnosed - almost 2 years. I had 2 neuros from one of the supposed best hospitals in the country tell me that I did NOT have MS. They questioned it, but never had an MRI done with contrast. I didn't know it should have been done. Instead they opted to rule out MS and move on to the concept that I just needed Paxil and I would be fine. I knew it wasn't just in my head but didn't know what to do or that I should push for more answers. My story gets more complicated, but that is all beside the point since this is about you!
The moral is that having the knowledge that you should push for more is crucial. Also, Nikki is absolutely correct, a scan from a year ago is completely irrelevant to what is going on today. I was finally diagnosed in February after having a MRI with contrast. I have had 2 more since then to make sure no new or active lesions are there. My new neuro would never accept a scan that was a year old is what I am trying to say I guess.
Obviously I have no way to say what you do or don't have, but can say to keep asking for answers until you feel satisfied.
Re: i am convinced that i have ms but neurologist doesn't believe me
Quote:
Originally Posted by Wilc516
Hi David,
Add me to the list of people who went through a long process to be diagnosed - almost 2 years. I had 2 neuros from one of the supposed best hospitals in the country tell me that I did NOT have MS. They questioned it, but never had an MRI done with contrast. I didn't know it should have been done. Instead they opted to rule out MS and move on to the concept that I just needed Paxil and I would be fine. I knew it wasn't just in my head but didn't know what to do or that I should push for more answers. My story gets more complicated, but that is all beside the point since this is about you!
The moral is that having the knowledge that you should push for more is crucial. Also, Nikki is absolutely correct, a scan from a year ago is completely irrelevant to what is going on today. I was finally diagnosed in February after having a MRI with contrast. I have had 2 more since then to make sure no new or active lesions are there. My new neuro would never accept a scan that was a year old is what I am trying to say I guess.
Obviously I have no way to say what you do or don't have, but can say to keep asking for answers until you feel satisfied.
Good luck!
Thanks for your kind words of encouragement, I have now got my neuro (reluctantly) to agree to a second opinion. If not guess I should move on and try another hospital. Thanks again.
Re: i am convinced that i have ms but neurologist doesn't believe me
I am experiencing a very similar situation. Every symptom I discuss with my neurologist he discards and non-specific and has hinted to all of it being in my head. Why I would want this problem I just can't imagine! I am frustrated and tired of testing to find myself without a diagnosis. My MRI did show lesions and I have many symptoms. I have an appointment for a second opinion in 2 weeks. Even my husband thinks I only experience symptoms because I self diagnose myself since I constantly research. I believe I am a resercher no doubt, but I only research after the onset of a symptom. Any comments?
Re: i am convinced that i have ms but neurologist doesn't believe me
Quote:
Originally Posted by CCinFL
I am experiencing a very similar situation. Every symptom I discuss with my neurologist he discards and non-specific and has hinted to all of it being in my head. Why I would want this problem I just can't imagine! I am frustrated and tired of testing to find myself without a diagnosis. My MRI did show lesions and I have many symptoms. I have an appointment for a second opinion in 2 weeks. Even my husband thinks I only experience symptoms because I self diagnose myself since I constantly research. I believe I am a resercher no doubt, but I only research after the onset of a symptom. Any comments?
You know, the term non-specific is now a recurring sound in my nightmares. The story you have just told is my story exactly, and yes I also research. Obviously we want to know what is going on with our bodies. I am lucky though, as my wife is right behind me and offers me nothing but encouragement and support and is right there next to me researching. The whole situation is soul destroying, and i am fed up with falling over in front of my four kids. But we have to keep fighting and pushing until we have some sort of diagnosis. It is vital to stay strong, and after the inspiration and help that this site has offered me I have found the strength to continue to fight.
I know exactly where you are coming from, and always available to talk if you need to. Keep fighting this thing.
Re: i am convinced that i have ms but neurologist doesn't believe me
Quote:
Originally Posted by CCinFL
I am experiencing a very similar situation. Every symptom I discuss with my neurologist he discards and non-specific and has hinted to all of it being in my head. Why I would want this problem I just can't imagine! I am frustrated and tired of testing to find myself without a diagnosis. My MRI did show lesions and I have many symptoms. I have an appointment for a second opinion in 2 weeks. Even my husband thinks I only experience symptoms because I self diagnose myself since I constantly research. I believe I am a resercher no doubt, but I only research after the onset of a symptom. Any comments?
Does your neuro handle MSers as a specialty?? Contact your local chapter of the MS Association or MS Society for a referral. You need not stick with a neuro who has not provided you with the service you expect.
As to "its all in your head"- Of course its in my head- physically most lesions are in your head and C-spine. The question is, Now that I agree its in my head (insert the "DUH" emoticon here for your doctor), what are we going to do? You can over research yourself into the proverbial corner, but if you have legitimate evidence, tell the doctor to get off the fence and tell you what you have.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Re: i am convinced that i have ms but neurologist doesn't believe me
Quote:
Originally Posted by david83a
You know, the term non-specific is now a recurring sound in my nightmares. The story you have just told is my story exactly, and yes I also research. Obviously we want to know what is going on with our bodies. I am lucky though, as my wife is right behind me and offers me nothing but encouragement and support and is right there next to me researching. The whole situation is soul destroying, and i am fed up with falling over in front of my four kids. But we have to keep fighting and pushing until we have some sort of diagnosis. It is vital to stay strong, and after the inspiration and help that this site has offered me I have found the strength to continue to fight.
I know exactly where you are coming from, and always available to talk if you need to. Keep fighting this thing.
Welcome! Does the neurologist specialize in MS? If he does and you are still getting the "run around", change to another neurologist. If he does not specialize in MS, change. The MS Society in the UK can help you locate a neurologist who is adept at meeting your needs.
