Aa
Buzzing Painful legs.
Hi again Guy's, I'm having a lot of trouble with my legs. They are extremely heavy. They feel like they are buzzing and especially my right shin gets a different sensation than my left. It's like i feel a numbness coming and going. This tightening really hurts. My ankles and knees especially get a piercing pain.
I have to rest them a lot to ease the discomfort, but any length of time standing, walking, kneeling. Just kills them. My legs are so uncomfortable. Is this a symptom one would experience in MS? My legs are getting worse since all this began. Pain, odd sensations. buzzing. The pain is so bad i hold onto things for support because of weakness.
I sweat profusely at night, i wake with numb fingers. I am really concerned. I'm due to have my vitamin B12 checked this week. My GP prescribed Cytagon tablets. I did also receive weekly injections for 6 weeks. My GP than said she wanted to try tablet form to see how they would work. I will yet again just talk to her about my symptoms like i have been now for two years.
I think this is MS. If it isn't than why haven't they found what it is, treated it instead of leaving me deteriorate? I cannot understand this, it's dumbfounding?
I'm waiting as you know for clarification on questions which i think if answered will shed light. I know you guy's think perhaps not, but something is causing my symptomsand I'm really concerned it's MS, even though everyone else thinks it's not.
Hugs
Marian
I have to rest them a lot to ease the discomfort, but any length of time standing, walking, kneeling. Just kills them. My legs are so uncomfortable. Is this a symptom one would experience in MS? My legs are getting worse since all this began. Pain, odd sensations. buzzing. The pain is so bad i hold onto things for support because of weakness.
I sweat profusely at night, i wake with numb fingers. I am really concerned. I'm due to have my vitamin B12 checked this week. My GP prescribed Cytagon tablets. I did also receive weekly injections for 6 weeks. My GP than said she wanted to try tablet form to see how they would work. I will yet again just talk to her about my symptoms like i have been now for two years.
I think this is MS. If it isn't than why haven't they found what it is, treated it instead of leaving me deteriorate? I cannot understand this, it's dumbfounding?
I'm waiting as you know for clarification on questions which i think if answered will shed light. I know you guy's think perhaps not, but something is causing my symptomsand I'm really concerned it's MS, even though everyone else thinks it's not.
Hugs
Marian
Hi JJ, and everyone else.
I apologize if that's what it's been like, ramming my beliefs down people's throats. It's not intentional JJ.
Apologies.
Marian
I apologize if that's what it's been like, ramming my beliefs down people's throats. It's not intentional JJ.
Apologies.
Marian
Hi JJ, sorry but my last post to you regarding the email needs to be explained better, the part about the referral that is.
Neurologist no 1 said he would refer me for a second opinion a good while ago. Having told my GP she said she too wanted to write a letter. I got an appointment, thought no more about it until i asked If neurologist no 1 had referred me. I was told that yes, she thought she being neurologist no 1 Secretary had sent one. She would check and get back to me. In the meantime I asked neurologist no 4's Secretary had she received a referral letter from no neurologist no 1. She confirmed she had not. But in between her confirming she didn't, i get another email from neurologist no 1 Secretary, saying neurologist no 1 was of the understanding that i had been seen.
I got back w her and said yes I had, but he was supposed to refer me.
Today i get told a referral has been sent to neurologist no 4, he of the understanding that i had been seen, and I confirming that i had. Isn't this odd JJ?
I just the i better explain better than i did earlier..
Marian
Neurologist no 1 said he would refer me for a second opinion a good while ago. Having told my GP she said she too wanted to write a letter. I got an appointment, thought no more about it until i asked If neurologist no 1 had referred me. I was told that yes, she thought she being neurologist no 1 Secretary had sent one. She would check and get back to me. In the meantime I asked neurologist no 4's Secretary had she received a referral letter from no neurologist no 1. She confirmed she had not. But in between her confirming she didn't, i get another email from neurologist no 1 Secretary, saying neurologist no 1 was of the understanding that i had been seen.
I got back w her and said yes I had, but he was supposed to refer me.
Today i get told a referral has been sent to neurologist no 4, he of the understanding that i had been seen, and I confirming that i had. Isn't this odd JJ?
I just the i better explain better than i did earlier..
Marian
1 Comments
Hi guy's any thoughts would be appreciated regarding,meeting or getting written answers regarding my last couple of posts.
Marian
Marian
Hi aspen2,
I've received an email from neurologist no 1, offering an appointment to discuss my questions. I would prefer them to be answered in written form. I asked to discuss these personally with him before, but he declined.
Can you give me your thoughts, I'm undecided. The hospital did tell me i would get them in written form. I want to get back shortly to neurologist no 1 Secretary to tell her, what I've decided. I think written form would be better.
Marian
I've received an email from neurologist no 1, offering an appointment to discuss my questions. I would prefer them to be answered in written form. I asked to discuss these personally with him before, but he declined.
Can you give me your thoughts, I'm undecided. The hospital did tell me i would get them in written form. I want to get back shortly to neurologist no 1 Secretary to tell her, what I've decided. I think written form would be better.
Marian
Hi JJ,
I've just received an email from neurologist no 1 Secretary. He has written a letter to Neurologist no 4, for a second opinion, but this was to be done months ago, and according to neurologist no 1 Secretary a couple of weeks ago, he was of the understanding that I had been seen.. I got back to her and said yes, i was seen by neurologist no 4.
Just now, it's confirmed that he's sent a referral letter to Neurologist no 4. Then the email says, that i still have a lot of questions, would i like an appointment to come and discuss them with him.
JJ, Personally i would like my questions answered in written form, as was told to me by the hospital. I've been seen by neurologist no 4, and he's given a diagnosis of chronic fatigue syndrome/ Fibromyalgia. Doesn't want to see me back.
I would prefer though that my questions be answered in written form.
Your thoughts please
Marian
I've just received an email from neurologist no 1 Secretary. He has written a letter to Neurologist no 4, for a second opinion, but this was to be done months ago, and according to neurologist no 1 Secretary a couple of weeks ago, he was of the understanding that I had been seen.. I got back to her and said yes, i was seen by neurologist no 4.
Just now, it's confirmed that he's sent a referral letter to Neurologist no 4. Then the email says, that i still have a lot of questions, would i like an appointment to come and discuss them with him.
JJ, Personally i would like my questions answered in written form, as was told to me by the hospital. I've been seen by neurologist no 4, and he's given a diagnosis of chronic fatigue syndrome/ Fibromyalgia. Doesn't want to see me back.
I would prefer though that my questions be answered in written form.
Your thoughts please
Marian
Hi JJ,
None of the neurologists ever referred to the McDonald Criteria. The only person who ever referred to criteria, was neurologist no 2. He said consensus diagnostic criteria. I did mention the McDonald Criteria to him, and he went on to say along with other Criteria.
I did mention it to neurologist no 4, but nothing was entertained.
I understand that this looks, like I'm obsessed about my symptoms, lesions, location, neurologists. But when you really look at what has been written, by them all, not one of them have written psychological. Neurologist no 1 claimed psychological. I'm sorry but something hasn't added up for me. There is conflicting evidence.
I understand totally where you are coming from, but really when you read all that I've posted, is it any wonder i don't understand it. I simply don't understand why a lesion measuring 6.6 is noted in September 2014, and in 2015 an addendum was offered, then not given. It's like the 6.6mm lesion never existed.
And the more i question it, the more avoidance i get, so yes it's frustrating, and yes it's upsetting, and i don't mean to intentionally take this out on anyone. But something is amiss, and that is as clear as day, when you read between the lines.
I know you've taken time to give explanations, and advice, and I've taken them on board, but i genuinely feel that if it's psychological it's because I'm clinically unwell, along with psychological because of the stress it's causing. And yes my symptoms are having an impact on my psychological health also. But it's not the cause, i know it isn't.
I'm sorry to hear about your mum, and you are doing your best to help her :)
JJ, Do you believe what I'm suffering from is a psychological disorder, due to another organic cause, or I'm unwell due to it being psychological and no other cause?
If you can look at what I've shared earlier to aspen2, can you come to a decision that it's not MS, although neurologist no 1 definitely excluded it.
Big Hugs
Marian
None of the neurologists ever referred to the McDonald Criteria. The only person who ever referred to criteria, was neurologist no 2. He said consensus diagnostic criteria. I did mention the McDonald Criteria to him, and he went on to say along with other Criteria.
I did mention it to neurologist no 4, but nothing was entertained.
I understand that this looks, like I'm obsessed about my symptoms, lesions, location, neurologists. But when you really look at what has been written, by them all, not one of them have written psychological. Neurologist no 1 claimed psychological. I'm sorry but something hasn't added up for me. There is conflicting evidence.
I understand totally where you are coming from, but really when you read all that I've posted, is it any wonder i don't understand it. I simply don't understand why a lesion measuring 6.6 is noted in September 2014, and in 2015 an addendum was offered, then not given. It's like the 6.6mm lesion never existed.
And the more i question it, the more avoidance i get, so yes it's frustrating, and yes it's upsetting, and i don't mean to intentionally take this out on anyone. But something is amiss, and that is as clear as day, when you read between the lines.
I know you've taken time to give explanations, and advice, and I've taken them on board, but i genuinely feel that if it's psychological it's because I'm clinically unwell, along with psychological because of the stress it's causing. And yes my symptoms are having an impact on my psychological health also. But it's not the cause, i know it isn't.
I'm sorry to hear about your mum, and you are doing your best to help her :)
JJ, Do you believe what I'm suffering from is a psychological disorder, due to another organic cause, or I'm unwell due to it being psychological and no other cause?
If you can look at what I've shared earlier to aspen2, can you come to a decision that it's not MS, although neurologist no 1 definitely excluded it.
Big Hugs
Marian
COMMUNITY LEADER
Actually i don't think anyone here has specifically stated that you don't have MS, at this moment in time you honestly don't have the diagnostic evidence or neurological conscientious to be dx with a neurological condition like MS, btw in case you are unaware, repeating the same information over and over like we are just not getting your point, is like yelling from a soap box and trying to ram your beliefs down other peoples throats, we are honestly not confused about MS...
Based on the Mcdonald Criteria the totality of your MRI's don't meet the minimum requirements, you have provided other diagnostic information that wouldn't be suggestive or consistent with MS, you have provided some symptom descriptions that wouldn't be suggestive of MS, you have provided information of having other medical diagnosis that could account for your hard evidence and symptoms which lowers MS as the possible causation, you haven't provided any clinically abnormal neurological signs suggestive or consistent with a neurological condition like MS, you have provided multiple neurological opinions in regards to MS who have explained that you don't meet Mcdonald.....
The information you've provided logically can't place MS at the top of your or anyone's possible causation list, that doesn't mean someone 100% can't have MS, what it mean's is that based on all the information you have provided, MS would not be the 'most likely' explanation over and above any other, there are a lot of alternatives to be considered before a dx of MS can be made.
You seem to have the idea that there is confusion about MS or a difference in opinion but the specific MS information repeatedly provided to you were not 'opinions', all the MS truths, factual information about diagnosing MS, information about your alternate medical issues etc etc may not of been what you understood or expected or even wanted to hear but none of which can be turned into to a 'difference in opinion' when MS facts don't support the understanding you have in your head...
It is never a good idea when reading 'support' based forums to assume emotive meaning and jump to conclusion of negative intent from other peoples sentences. IF you read something or hear something and apply emotive meaning not stated and it upsets, annoys, makes you angry, feel disrespected, dismissed, etc, it honestly has nothing to do with the other person, it is always based on your own feelings, your thoughts, your sensitivities, your emotions, your history etc
In exactly the same way that a doctor who expresses their annoyance, frustrations, aggression, impatience etc will incorrectly lay blame on a patient for pushing their emotional button's, it has nothing to do with anyone else but their own emotional health and self control in the moment...he/she made me feel 'x' is never valid justification for our behaviors, it doesn't matter who you are, it's just never a good thing to take our feelings out on other people online or in the real world.
My mum is dx with bipolar her main issues are anxiety that topples her into major depression and those manic high's everyone thinks of are not the type of high that most people with bipolar experience..."In the past, bipolar depression was lumped in with regular depression, but a growing body of research suggests that there are significant differences between the two, especially when it comes to recommended treatments....
Despite many similarities, certain symptoms are more common in bipolar depression than in regular depression. For example, bipolar depression is more likely to involve irritability, guilt, unpredictable mood swings, and feelings of restlessness. People with bipolar depression also tend to move and speak slowly, sleep a lot, and gain weight. In addition, they are more likely to develop psychotic depression—a condition in which they’ve lost contact with reality—and to experience major disability in work and social functioning." http://www.helpguide.org/articles/bipolar-disorder/bipolar-disorder-signs-and-symptoms.htm#what
I don't know the reliability of the source but it aptly describes what my mum deals with when she's in a major depressive state, we kept a diary entry she wrote many years ago, she doesn't have the memories of a lot of things afterwards, she is a highly intelligent women who at times is incapable of taking in anything and seeing reason but this diary entry in her own words demonstrates just how incredibly illogical and different she actually becomes when her mental health has taken over.
It has never been my intent to shame or make her feel worse about what 'she' has no control over, she has an innocent intent and is completely unaware in the moment but i am brutally honest when she gets stuck on a thought and believes she's making good decisions without being able to see the negative consequences of her actions, i don't tell her what she wants to hear, i tell her what she 'needs' to hear and sometimes in the moment she hates me for it.....understandably it can get to be a bit too repetitive after a life time but i've long accepted that if i didn't do what I do for her she'd be lost to us, she's one of mine and i don't give up on me or mine!
My opinion...Life is not fair, it's a myth of epic proportions that it's suppose to be, bad things happen to good people but you move on by living the best life that you can with what you have. You do not live a good life by looking back at what might of been, giving in or give up when things get harder, you live a good life by digging deeper and getting busy changing what you can change and accepting what you can't.
No diagnosis can give you that state of mind, you chose to do nothing to help your self or you chose to do something to improve your tomorrows, but doing something is always going to involve a lot of hard, hard work that once you start you keep doing, through all the ups and downs. If your entire focus is fixated on getting a diagnosis or proving the one you have is wrong, you waste every opportunity put before you that may actually be of help to you.
So please take a step back and ask your self, do I actually want to get better or do I just want to be right and keep chasing a dx that may never happen? If you want to get better then stop chasing, stop knee jerk reacting and go see your supportive GP and ask what he recommends you do, ask him if he thinks it might be beneficial to get an occupational or physio therapy assessment to work out what exercises you can do to help with your dizziness etc ask him to help you move forward so you can get better!
I truly hope i've given you something to think about it helps you.....JJ
Based on the Mcdonald Criteria the totality of your MRI's don't meet the minimum requirements, you have provided other diagnostic information that wouldn't be suggestive or consistent with MS, you have provided some symptom descriptions that wouldn't be suggestive of MS, you have provided information of having other medical diagnosis that could account for your hard evidence and symptoms which lowers MS as the possible causation, you haven't provided any clinically abnormal neurological signs suggestive or consistent with a neurological condition like MS, you have provided multiple neurological opinions in regards to MS who have explained that you don't meet Mcdonald.....
The information you've provided logically can't place MS at the top of your or anyone's possible causation list, that doesn't mean someone 100% can't have MS, what it mean's is that based on all the information you have provided, MS would not be the 'most likely' explanation over and above any other, there are a lot of alternatives to be considered before a dx of MS can be made.
You seem to have the idea that there is confusion about MS or a difference in opinion but the specific MS information repeatedly provided to you were not 'opinions', all the MS truths, factual information about diagnosing MS, information about your alternate medical issues etc etc may not of been what you understood or expected or even wanted to hear but none of which can be turned into to a 'difference in opinion' when MS facts don't support the understanding you have in your head...
It is never a good idea when reading 'support' based forums to assume emotive meaning and jump to conclusion of negative intent from other peoples sentences. IF you read something or hear something and apply emotive meaning not stated and it upsets, annoys, makes you angry, feel disrespected, dismissed, etc, it honestly has nothing to do with the other person, it is always based on your own feelings, your thoughts, your sensitivities, your emotions, your history etc
In exactly the same way that a doctor who expresses their annoyance, frustrations, aggression, impatience etc will incorrectly lay blame on a patient for pushing their emotional button's, it has nothing to do with anyone else but their own emotional health and self control in the moment...he/she made me feel 'x' is never valid justification for our behaviors, it doesn't matter who you are, it's just never a good thing to take our feelings out on other people online or in the real world.
My mum is dx with bipolar her main issues are anxiety that topples her into major depression and those manic high's everyone thinks of are not the type of high that most people with bipolar experience..."In the past, bipolar depression was lumped in with regular depression, but a growing body of research suggests that there are significant differences between the two, especially when it comes to recommended treatments....
Despite many similarities, certain symptoms are more common in bipolar depression than in regular depression. For example, bipolar depression is more likely to involve irritability, guilt, unpredictable mood swings, and feelings of restlessness. People with bipolar depression also tend to move and speak slowly, sleep a lot, and gain weight. In addition, they are more likely to develop psychotic depression—a condition in which they’ve lost contact with reality—and to experience major disability in work and social functioning." http://www.helpguide.org/articles/bipolar-disorder/bipolar-disorder-signs-and-symptoms.htm#what
I don't know the reliability of the source but it aptly describes what my mum deals with when she's in a major depressive state, we kept a diary entry she wrote many years ago, she doesn't have the memories of a lot of things afterwards, she is a highly intelligent women who at times is incapable of taking in anything and seeing reason but this diary entry in her own words demonstrates just how incredibly illogical and different she actually becomes when her mental health has taken over.
It has never been my intent to shame or make her feel worse about what 'she' has no control over, she has an innocent intent and is completely unaware in the moment but i am brutally honest when she gets stuck on a thought and believes she's making good decisions without being able to see the negative consequences of her actions, i don't tell her what she wants to hear, i tell her what she 'needs' to hear and sometimes in the moment she hates me for it.....understandably it can get to be a bit too repetitive after a life time but i've long accepted that if i didn't do what I do for her she'd be lost to us, she's one of mine and i don't give up on me or mine!
My opinion...Life is not fair, it's a myth of epic proportions that it's suppose to be, bad things happen to good people but you move on by living the best life that you can with what you have. You do not live a good life by looking back at what might of been, giving in or give up when things get harder, you live a good life by digging deeper and getting busy changing what you can change and accepting what you can't.
No diagnosis can give you that state of mind, you chose to do nothing to help your self or you chose to do something to improve your tomorrows, but doing something is always going to involve a lot of hard, hard work that once you start you keep doing, through all the ups and downs. If your entire focus is fixated on getting a diagnosis or proving the one you have is wrong, you waste every opportunity put before you that may actually be of help to you.
So please take a step back and ask your self, do I actually want to get better or do I just want to be right and keep chasing a dx that may never happen? If you want to get better then stop chasing, stop knee jerk reacting and go see your supportive GP and ask what he recommends you do, ask him if he thinks it might be beneficial to get an occupational or physio therapy assessment to work out what exercises you can do to help with your dizziness etc ask him to help you move forward so you can get better!
I truly hope i've given you something to think about it helps you.....JJ
1 Comments
JJ,
There is one thing that i don't understand, and would appreciate your thoughts please.
Can you tell me, how all my MRI's talk about 3.5mm, through the years. Then in 2014, 6.6mm is noted. 2015/2016 back to 3.5.
Can you tell me how 3.5mm can be seen, and 6.6 can be seen, but the focus is only on the 3.5mm, since 2010.
My double vision and balance problems began in 2014, a 6.6mm lesion was noted. Now either the 6.6mm is relevant or not relevant, but if this lesion is the cause of my symptoms, i will need to know why the focus turned away from that, and the focus is on the 3.5mm.
I need clarification because 6.6 is bigger than 3.5 and this needs clearing up for me.
Marian
There is one thing that i don't understand, and would appreciate your thoughts please.
Can you tell me, how all my MRI's talk about 3.5mm, through the years. Then in 2014, 6.6mm is noted. 2015/2016 back to 3.5.
Can you tell me how 3.5mm can be seen, and 6.6 can be seen, but the focus is only on the 3.5mm, since 2010.
My double vision and balance problems began in 2014, a 6.6mm lesion was noted. Now either the 6.6mm is relevant or not relevant, but if this lesion is the cause of my symptoms, i will need to know why the focus turned away from that, and the focus is on the 3.5mm.
I need clarification because 6.6 is bigger than 3.5 and this needs clearing up for me.
Marian
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
Yes, it's confusing. But you are not hearing the explanations. You did say you would consider moving on to a new neuro or ms neuro and that seems like a good decision.
Not much else any of us can do at this point ... Hopefully you can come to peace with your time in limbo. It IS dumbfounding, however you will have an answer at some point.
I had a permanent disability by the time I was finally diagnosed ... It is upsetting and frustrating ... But the diagnostic process depends on certain elements that must be there ... Not for us, but for the diagnosing neurologist.
Don't forget the link I sent you ... ☺️
aspen