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MS like symptoms - help please
Hello...thanks for reading! I am a 25 year old female. About 14 (Sep 2011) months ago I noticed a faint tingling sensation in my left calf (no pain). I went to nuero and he couldn't find anything and told me to come back if it got worse. By January 2012 the tingling had spread to my right leg and parts of my arms and hands. I went back to see him and he did MRI of neck and lower back as well as brain w and w/o contrast. I also had an SSEP and blood work for thyroid and vitamins checked. Everything came back normal. He told me maybe I was just stressed out which caused me a lot of anxiety because I know what I'm feeling is real. He prescribed me an anti-depressant and muscle relaxers which has helped my anxiety alot. The symptoms that remain and seem to be worsening are tingling/burning in lower legs, periodic blurred spots in vision (had my eyes checked - nothing), tingling in my tongue and parts of my face, random feelings of loss of balance but I haven't fallen. I also get tingling in my fingers. When I stand or walk for a long time I notice my legs feel weak (I don't exercise much and have a desk job). My question is does this sound like something? anything? I am so upset that the docs just push me away they can't seem to figure it out. Thanks.
COMMUNITY LEADER
I have a little concern regarding the amount of alcohol you say you have been drinking daily for years, honestly that is a lot of alcohol and it could actually be a possible cause of your sx's. I'm not saying it definitely is, just that it is a possible. Alcohol is 'one' cause of Peripheral Neuropathy, the sx's can be quite similar in a lot of ways to some of the sx's seen in MS, which is why i'm thinking if your sx's are physiological it 'maybe' an issue of the peripheral nervous system. My older brother has PN from long term alcohol damage, so from my perspective its a really good idea to reduce the amount of alcohol you drink or as you said stop.
The other thing to consider is the possibility of your sx's being psychological, again i'm not saying it definitely is, just that its another possible because you said "I do notice that the more I worry about my symptoms the stronger they get so I am taking medicine to help reduce my anxiety about all of this." which is more inline with what typically happens when its not physiological.
Its not unheard of to experience a strange sensation and because the dr's start bringing up all these worrying conditions, send you for tests or even a neurologist and that triggers anxiety about your health, that they didn't have before. Some times just knowing that your anxiety could be making things worse or compounding things. Can actually help to keep things in perspective, and change their focus to getting their anxiety under control as the first necessity. You've already recognised your anxiety is part of the problem, and taken steps to deal with it. So if you put everything else to one side for the moment and keep you focus on getting that back to normal, it should go a long way to help.
Food for thought!
Cheers.........JJ
The other thing to consider is the possibility of your sx's being psychological, again i'm not saying it definitely is, just that its another possible because you said "I do notice that the more I worry about my symptoms the stronger they get so I am taking medicine to help reduce my anxiety about all of this." which is more inline with what typically happens when its not physiological.
Its not unheard of to experience a strange sensation and because the dr's start bringing up all these worrying conditions, send you for tests or even a neurologist and that triggers anxiety about your health, that they didn't have before. Some times just knowing that your anxiety could be making things worse or compounding things. Can actually help to keep things in perspective, and change their focus to getting their anxiety under control as the first necessity. You've already recognised your anxiety is part of the problem, and taken steps to deal with it. So if you put everything else to one side for the moment and keep you focus on getting that back to normal, it should go a long way to help.
Food for thought!
Cheers.........JJ
I'm curious about the level of care you are getting. I would run, very fast, away from a neurologist that patted me on my head and handed me a prescription for an anti-depressant. That just means that they could not find anything. If they couldn't find anything then it must all be in your head.
I PCP who says everyone is vitamin D deficient so there's no reason to test is also to be avoided. There's deficient and then there's MS deficient. I would contact the Chicago area chapter of the National MS Society and ask for a referral to an MS Specialist. Here's the link.
http://www.nationalmssociety.org/chapters/ild/index.aspx
Kyle
I PCP who says everyone is vitamin D deficient so there's no reason to test is also to be avoided. There's deficient and then there's MS deficient. I would contact the Chicago area chapter of the National MS Society and ask for a referral to an MS Specialist. Here's the link.
http://www.nationalmssociety.org/chapters/ild/index.aspx
Kyle
Hi there...yes I just skipped that I first visited a PCP. My first visit they just checked my thyroid and iron levels. I am slightly anemic but she said there was no way that would cause the calf tingling and sent me to see the neurologist. I have since had by B12/electrolyte tested and that came back "normal" although I wasn't given a number or anything. My most recent trip to the doctor I requested she check B6 and Vitamin D. I am still waiting for results on B6 and she told me no need to check Vitamin D as "everyone" is deficient there (we live in Chicago). I do notice that the more I worry about my symptoms the stronger they get so I am taking medicine to help reduce my anxiety about all of this. I am trying to accept that over time this will hopefully be figured out. I do drink alcohol and have been consistently(almost daily 5 drinks) since I was a teenager. I recently decided to stop as I am sure that is only making the problem worse. I have poor diet and don't exercise, but I have been told my vitamin levels are normal.
Hey there and welcome to the forums!
I have read the symptoms you've listed and the tests that you have gone through.
The first thought that came to my mind after you mentioned that since Sept of 2011 you have been having paresthesias of your left calf is that normally, a person would go to their primary doctor after such a symptom that was unexplained and was consistent rather than a once or twice type deal in 14 months.
A primary doctor would order blood work and diagnostic tests. However, since you skipped that part in your post (I'm OCD with order of things) I was wondering if that was on purpose due to you wanting to shorten your post or did you request to see a Neuro/MS specialist from your primary when you went to see him/her with your symptom?
The reason why I ask this is because you said you had one symptom that spread to another part of your body and mentioned you went to a Neuro then to a MS Specialist with nothing before that.
Regardless, this tingling spreading and on tongue indicates to me more of a Vit B12 deficiency/Vit D/electrolyte imbalance. Were you tested? If so, what were your levels?
You stated you're 25 years old, do you go out with your girlfriends a lot and "party"? (Drink alcohol)? How's your diet?
It's good that you're keeping track of your symptoms and tests, but also it can become a little cumbersome and increase anxiety levels that you can avoid.
Also, looking up symptoms on the internet and reading that someone has something similar to your symptoms or its a symptom of some progressive demyelinating disease can increase your anxiety as well. Try to relax a bit, although I know its hard and just wait things out. Sometimes time is what people need to solve the puzzle of symptoms that been haunting them for years!
I'm sorry you've been going through this and I know its hard when a doctor and/or specialist do not give you answers.
Please keep in touch!
Lisa
I have read the symptoms you've listed and the tests that you have gone through.
The first thought that came to my mind after you mentioned that since Sept of 2011 you have been having paresthesias of your left calf is that normally, a person would go to their primary doctor after such a symptom that was unexplained and was consistent rather than a once or twice type deal in 14 months.
A primary doctor would order blood work and diagnostic tests. However, since you skipped that part in your post (I'm OCD with order of things) I was wondering if that was on purpose due to you wanting to shorten your post or did you request to see a Neuro/MS specialist from your primary when you went to see him/her with your symptom?
The reason why I ask this is because you said you had one symptom that spread to another part of your body and mentioned you went to a Neuro then to a MS Specialist with nothing before that.
Regardless, this tingling spreading and on tongue indicates to me more of a Vit B12 deficiency/Vit D/electrolyte imbalance. Were you tested? If so, what were your levels?
You stated you're 25 years old, do you go out with your girlfriends a lot and "party"? (Drink alcohol)? How's your diet?
It's good that you're keeping track of your symptoms and tests, but also it can become a little cumbersome and increase anxiety levels that you can avoid.
Also, looking up symptoms on the internet and reading that someone has something similar to your symptoms or its a symptom of some progressive demyelinating disease can increase your anxiety as well. Try to relax a bit, although I know its hard and just wait things out. Sometimes time is what people need to solve the puzzle of symptoms that been haunting them for years!
I'm sorry you've been going through this and I know its hard when a doctor and/or specialist do not give you answers.
Please keep in touch!
Lisa
COMMUNITY LEADER
Hi and welcome,
I gather because you've posted on an MS community forum, your wondering if what you have experienced is sounding like MS or not. The thing to keep in mind, is that MS does have many mimics, sx's (symptoms) listed in MS are also found in many other conditions too, conditions much more common than MS generally is. The MRI diagnostic evidence of demyelination, so thats brain and or spinal lesions is very heavily weighted evidence for a dx of MS but a persons clinical signs and sx pattern are also important indicators too, it all leads towards or away from what it may be.
Clinical signs are basically what the neurologist finds during their neuro testing, the physical sign of lesions, the MRI evidence basically confirms the clinical. When a person doesnt have the clinical signs or the diagnostic evidence eg MRI, LP, SSEP etc to support the causation is relating to conditions with CNS damage, then it doesnt necessarily mean the sx's are not real, just that there isn't any evidence to support the persons sx's are likely being caused by a neurological condition like MS.
Sx's consistent to presenting in MS, are more commonly unilateral, but sx's that spread, cross over to include both upper and lower, multiply rappidly in only a few months isn't very typical with MS. So there are a few indicators that your sx's could be caused by something else, and that is worth discussing with your dr. Normal test results in there own way can help the direction of what could possibly be causing these sx's, so they should be helpful in the end.
Good luck.......JJ
PS its often quiet on the weekends so it might take awhile to get more responses and ideas
I gather because you've posted on an MS community forum, your wondering if what you have experienced is sounding like MS or not. The thing to keep in mind, is that MS does have many mimics, sx's (symptoms) listed in MS are also found in many other conditions too, conditions much more common than MS generally is. The MRI diagnostic evidence of demyelination, so thats brain and or spinal lesions is very heavily weighted evidence for a dx of MS but a persons clinical signs and sx pattern are also important indicators too, it all leads towards or away from what it may be.
Clinical signs are basically what the neurologist finds during their neuro testing, the physical sign of lesions, the MRI evidence basically confirms the clinical. When a person doesnt have the clinical signs or the diagnostic evidence eg MRI, LP, SSEP etc to support the causation is relating to conditions with CNS damage, then it doesnt necessarily mean the sx's are not real, just that there isn't any evidence to support the persons sx's are likely being caused by a neurological condition like MS.
Sx's consistent to presenting in MS, are more commonly unilateral, but sx's that spread, cross over to include both upper and lower, multiply rappidly in only a few months isn't very typical with MS. So there are a few indicators that your sx's could be caused by something else, and that is worth discussing with your dr. Normal test results in there own way can help the direction of what could possibly be causing these sx's, so they should be helpful in the end.
Good luck.......JJ
PS its often quiet on the weekends so it might take awhile to get more responses and ideas
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