Hi Guys and Gals,
I've been reading this board's postings for a couple of days and I have to say, what a wonderful community of amazing, supportive people here. Thank God that there is such an amazing place to come to share information, voice concerns, have a shoulder to cry on and an ear to listen.
To get to my story (I'll try to be brief as possible, as I tend to ramble a bit), I've been having some strange symptoms for the past month and I don't know what is going on. It started a month ago with me feeling like I was coming down with a flu or something, just feeling very tired and a little dizzy (which has since progressed). [Oh, btw I am a 29 yo male, no medical issues, no medications]
Then, the symptoms progressed to include:
tingling in hands and feet, occasional pins and needles
numbness in lips
problems walking straight/coordination
Spells of lightheadedness with slurred speech, forgetfulness, confusion, pins and needles, and feeling "drunk" (feeling out of it and giddy) [I don't do drugs and rarely drink, maybe avg 1-2 glasses of wine per month]
burning sensation on skin (like a sunburn), this time just behind my left knee but now there is a slight sharp pain there since this morning.
oh, and I did have a sore throat that comes and goes but it's not a normal sore throat, more like a spasming if that makes any sense?
I have had no cough or fever and nothing to indicate that I've had any type of infection or flu, although it's possibly just a weird viral thing.
I've had these symptoms before 2 years ago and assumed it was stress related, so I went to a naturopath and had a lot of acupuncture/herbs/etc., quit my job and took a year off to rest (thankfully I moved back 'home' so I was able to do this). This time, though, the symptoms seem worse and I am not under any stress so it seems odd. I have noticed that it happens to occur after periods of physical exertion (the first time I had started riding my bike to work and this time 'round, I've been doing a lot of garden/yard work). I went to the ER when I started having my "drunk"/dizzy/tingly spells but they just took an ECG (clear) and sent me home and told me to visit my family Dr, who had already ordered blood tests. My blood tests were all clear (blood profile, C-RP, Mono, Thyroid, Fasting Glucose) and he basically told me I had subclinical depression without really looking at me (and he tried to diagnose me with this on my first appointment before he even really listened--unfortunately, I think he's trying to fit me into a box because of family history). I have NO symptoms of depression or anxiety, no feelings of hopelessness/lack of interest/etc etc and I've always been a positive guy with a good sense of humour. People always say to me "wow, you're so happy all the time I want whatever you're on!".
Gosh, I'm rambling. Okay, so I basically went for a second opinion at the local clinic. This doctor actually took the time to LISTEN to me and did a proper neurological exam. Ordered some more tests (urine, fasting glucose, vit D, B12, Calcium, Sodium?, Potassium, BUN (father had kidney cancer), AST, etc.) and said that he expects the tests to come back negative and I'll probably have to do a CT scan of the brain. I told him I was willing to have a private MRI done if necessary. I don't think it is B12 or D3 because I give myself occasional b12 injections and take a sublingual D3 drop every day.
I'm not at all anxious about the prognosis, just wanting to feel better and know what's going on and if it's all in my head (which I doubt), then at least rule out anything 'real' and then go from there LOL.
I'm sure I'm forgetting stuff but I'm already going on for too long. My question is, do you think this might be MS? I know you're not doctors and can't diagnose me but I'm wondering if you think my symptoms are consistent with MS or could exclude it?
Thanks in advance for sticking through this long post and for your replies.
Last edited by wittynamehere; 04-05-2010 at 11:48 AM.
Reason: adding info
I know you're not doctors and can't diagnose me but I'm wondering if you think my symptoms are consistent with MS or could exclude it?
Hi wittynamehere. I am happy that you concluded your post with this above statement, because you are correct. We arent doctors and cant actually dx you; however we might be able to help you. First, welcome to our board...we try to be supportive and we are happy that you found us!
But onto your more important questions. MS is a Neurological disease which does present very much like you describe, but so does Lymes Disease, several other autoimmune diseses, Lupus and even some brain infections...so its really important that you get to the bottom of this before jumping to conclusions. As you stated even B12 deficiency can seem similar, and even if you are giving yourself injections- if you arent absoutely sure of your levels, you can be hurting yourself by doing it without having them monitored. Will be curious to see how your blood work comes back.
Lymes disease is the most closely related to the symtoms you described- and the bad news is it is extremely hard to diagnose. The normal standard blood work which doctors do, notoriously show false negatives- therefore finding a LYme literate doctor (read more about this on the Lymes boards here on healthboards) is key....
You mentioned a CT scan. That wont help you. You need an MRI of the brain and Cspine in order to look for MS related problems; specifically lesions......a CT scan wont pick them up. You also mentioned a host of tests which you have had done. Not a bad place to start, because there is no definative test for MS, therefore everything else needs to be ruled out, so you are starting with a decent amount of blood work.
Im not sure where you live, but my advice would be to get yourself to a decent neurologist, a MS specialist if you can find one- and start ruling out things....a good MS specialist will not only dx, but also rule out MS- and know where to send you for more help....if you have to go the general Neurologist route, please inquire and find one who has a stable of MS patients...some Neuros only specialize in migranes, or Parkinsons Disease, or other things , but have absolutely no idea of what MS can look like as far as symtoms.
Your symptoms definately sound Neurological....I hope you feel better soon.
thank you SO MUCH for your response, it's very helpful! I live in Canada and as you probably know, although we have great "free" healthcare, our access to tests and specialists is extremely limited. I will try and push the private MRI thing to the 2nd doc again on my next visit (depending on the blood results).
I've seen a lot about Lyme disease and am totally aware of the possibility but I don't think it's very likely as I'm generally not an "outdoor" person (LOL), although I'm trying to start a veggie garden, and I've never had any weird bites or classic "bullseye rash" but anything is possible I suppose
I just found out that we have an MS clinic downtown so if the doc thinks it could even possibly be MS, I'll ask for a referral to them or at least an MS specialist neuro. I'm not really sure how the system works here for diagnosis, the only time I've ever been to a specialist was an ENT once when my left side of my face swelled up (some type of salivary gland thing) but by the time i got to the specialist, it was 3 months later and of course had healed itself (probably just a stone). He asked me why I didn't come in earlier, and I was like well you have a 3 month wait list, duh! Doctors, sheesh!
Anywho, thanks again for your reply! Your posts here have been very informative. I'll keep you guys updated on whatever happens (I hate reading all these threads on the internet where the OP never follows up and I want to know what the outcome was, I guess I'm nosey lol).
Oh, I forgot to add: the clinic doc did a reflex test and it didn't work on my arms and took a few tries to get my knees going. Unless he messed it up, it's kind of weird because I used to have very sensitive reflexes. Don't know if that's relevant, coincidental, or maybe he just missed the mark ?
hi again. I do know allot about Canada and your "free" healthcare. National Healthcare isnt all its cracked up to be when it comes to needing immediate, or specialty help, is it? Many of my online friends live in Canada, and have dealt with what you are going thru, and we have many posters here as well who Im sure can sympathize with your situation. Wait and see- they'll post!
You sound like you are on your way, knowing what to ask for...and its great that you have a MS clinic near by- thats absolutely the most important thing you should be asking for a referral for....
As for Lymes. You dont have to be an outsidey type person to contract Lymes disease- and the bullseye rash doesnt always show up. My stepson had Lymes for almost a year before they suspected that is what it was, and to this day, he swears he never pulled a tick off himself, nor have they ever found it! On that note, I live in NJ, and although we are half way between NYC and Philadelphia, we have deer ticks! I actually found one on my carpet not long ago....how it got there, Il never know. We dont have pets- but possibly it came in on our shoes or our slacks....see how easy it is to have one and never even suspect it?? My local Infectious Disease guy ID'd it as a deer tick, I wasnt entirely sure what type it was. (not exactly a tick specialist)..But you dont want to rule it out completely, however, you can most certainly start with a REALLY GOOD MS doc and go from there.
The thing you wrote about the reflex test is baffling.....with MS, your reflexes can tend to be different from day to day; however there is usually a distinct reaction to certain types of tests....dont sweat it. When you get a referral, Im sure they will attempt the reflex test again and this time, ask questions about what the reactions, or NON reactions mean!
I think you definately need a more comprehensive Neurological Evaluation- what you described isnt quite as complete as a exam as you should have had...but thats why they do referrals, right? Youll see a specialist and get the care you deserve. Dont worry about the fact that this might take months to get....with MS, almost all of us have had it for years before we ever get dx; we just didnt have the symtoms to tell us something was wrong. Once you start showing a doctor what your symtoms are, and he can start labeling it, then youll be moving towards a dx...too many doctors tend to write this stuff off as being "all in your head" without actually taking those MRIs of your head and seeing what really is going on in there!
Your sense of humor will serve you well during this endeavor. There is nothing fun about going from doc to doc, trying to get answers....start keeping a journal of every symtom, how long it lasts, if anything helped it (such as a good nights sleep, or a Tylenol, or a cold shower) remember that MS is usually heat sensitive...so, if you take hot showers and tend to get light headed, dizzy or "off" when you get out, thats s symtom too. Try cooling down your water temp a bit....also since youve already started your journey of blood tests...ask if you can be copied on the results. It will save you time and energy to have a file with all your previous test results in it, so that you dont have to wait until someone sends another doctor your previous test results. Keep a copy of everything you can get your hands on!
Thanks again Nikki! I will try and be stronger and ask more questions and ask for copies of things. I'm a little intimidated by dr's, especially my family doctor...it took some nerve for me to go to the clinic for a second opinion but I just felt that I had to do it.
Please try not to be intimidated. Unfortunatley, the only person who is going to advocate for you- IS YOU. Its really a problem, but now a days, people dont get what they are entitled to, without a fight. You dont have to be nasty about it, but you absolutely have to be diligent about it!
By keeping copies of things, asking alot of questions and of course, shouting out to us here for explanation of things- youre going to learn allot about this disease, whether you have it or not! I wouldnt wish it on anyone, however there are many WORSE things to have then MS. At least, its manageable. Seems like you are already learning how to manage your symptoms and you dont even know what they mean. It will be much easier for you once you find out!
You are so right! Although of course I wouldn't "welcome" a diagnosis of MS, at least I'd know what was wrong and could take steps to prevent complications and, as you stated, there are far worse things to have, like my Dad's kidney cancer. [GP told him his back pain was "stress", then a "torn ligament" and finally when he got peeved off at the doc, he was sent to a rheumy and got diagnosed with kidney cancer--he passed away 4-5 months later. I have more stories like this with my sister, you can probably understand why I have trust issues with my GP].
You'd think I would be more anxious about health stuff, but I'm actually more zen about things like this now because I know it's very unlikely anything life-threatening or totally life altering, although anything's possible I suppose, but I think I could 'handle' a diagnosis of MS (esp. if it was the RRMS type) whereas I'd be more scared of the big C, which I doubt I have (due to symptoms, blood test results, etc.).
85% of people who are dx with MS have relapsing/remitting type. It would almost be impossible for you to just start having symtoms now, which seem to be intermittent and have any other type...
As for the big C, very unlikely. Your symtoms along with your blood work, etc do not support that. I wouldnt worry.
As for your GP, can you switch? Sounds like someone I wouldnt want to be diagnosing me!! Is that an option? Im not sure how GPs are choosen where you live....meanwhile, get that referral to a MS doc and youl be on your way to having some answers..like I said, MS is manageable. Stay Zen. Its the only way to go...
Thanks so much, that is very reassuring info! I agree, if I did have MS then it would most likely be RRMS but I'm probably jumping the gun. I just had a little nap, was feeling tired and my muscles were twitchy/jumpy--could just be subconscious because I'm thinking about it but I did go outside in the sun bundled up and watered the garden and moved some stuff around. And I did have a hot bath with epsom salts last night to ease my muscles. Hmm, I don't know if heat/exercise really exacerbates it or not but I'll def. keep an eye on that.
We can choose our own doc's here but for some reason, not a lot are accepting new patients (I think a lot of them are older, especially where I live, and there is a shortage of new doc's plus the younger ones tend to specialize so they can make a decent living). We do have a ton of free clinics which are hit-and-miss re: quality of the doctors, but this one I saw for the 2nd opinion seems pretty good. I also have an AMAZING naturopath, I know he can't diagnose me or refer me to anybody but he can def. help with symptom management I'm sure, especially any stress, etc.
Yes, I'm definitely close to 'firing' my doctor. I certainly will if this ends up being something serious and not all in my head lol. Otherwise, I am likely moving back east next year and I can get by until then
I've been reading a lot of the old posts and there is just something so reassuring about this board. If I don't have MS, at least I have learned a lot about it and have more understanding and compassion for people who are living with MS! And it's nice to know that people can often deal with the symptoms and have a relatively normal, productive life.
Hi. You said And it's nice to know that people can often deal with the symptoms and have a relatively normal, productive life. . Thats an understatement!! Almost all of us live normal lives. I work fulltime, over 50 hours a week, go to school at the Graduate Level, have 3 kids and a needy husband. I keep a house, manage a budget and do everything that all "normal" people do! Everyone I speak to here on healthboards has a normal life. Not all of them are as busy as me, but no one is complaining that MS is hindering them in any way. Yes, we have relapses and really bad days, sometimes weeks- and yes we have to get more rest and balance ourselves in order to be our best.....but honestly, MS is manageable.
Be careful with your Naturopath. Be careful of supplements and things which can actually hurt MSers. Because it is an autoimmune disease, there are alot of things which can actually HURT you, which for "normal' people would be smart to take. Things like eccinachea, or certain immune support boosters, can actually make MSers feel worse. Many herbs and supplments are NOT good for MSers. However, holistic medicine can also help. Taking the proper supplements, can really make a difference in our lives. Amino Acids (fish oils) for brain health, vitmains B and D are important....taking C is not a good thing if you are already getting the RDA in your foods, and overdoing it on anything is detrimental to our systems. You should discuss this with your doc, since you seem to trust him.
You are so right! I have seen on this board and elsewhere plenty of people with MS who have "normal" lives so if I do get an MS dx, I have lots of inspiration! Knowing how things have gone in the past, everything will probably come back clear and I'll get told it was a viral thing or something nonspecific. Either way, it would be nice to know what's going on. I found my papers from the last time I had an episode like this and the symptoms are very similar.
I def. won't take any supplements without doing full research first. Haven't seen my ND in over a year but when he treated me the last time, he basically treated me with acupuncture, probiotics, and NAC. I look forward to some acupuncture for relaxation and (hopefully) some symptom relief but will hold off on the supplements until I either rule out or get a dx of MS (or whatever it ends up being/not being). Thanks for that info, it's good to know!
Oh, and I just did my 2nd blood/urine to rule out a bunch of stuff (the B12/D/Sodium/Potassium/etc. tests) so at least I felt like I did something proactive about it today! I had some weird muscle twitching last night (more than usual, I mean) and a little muscle jerking, could be a symptom, could be coincidental (maybe the way I've been sitting up in bed?), could be subconscious for all I know lol. Either way, something to note I guess.
AND I requested copies of this round of tests and the last test to be sent to me from the lab, which they will gladly do so that's good to know. I'm going to try and get copies of everything going forward.
Last edited by wittynamehere; 04-06-2010 at 01:10 PM.
Reason: forgot something
Okay, quick update. I called the clinic and my test results came back, all in perfect parameters (as both the doc and I expected) except the receptionist had put me on hold and said she spoke with the dr and he said everything is okay so I'm good to go. I was kind of peeved, because when he ordered the tests he said that he expected them to come back clear, they were just to rule out stuff, and that he would probably order a brain scan. What the heck?! I told that to the receptionist and she kind of laughed at me and then said that if I was still having symptoms, then I should get it checked out. Well, of course I'm still having symptoms, I wouldn't be following up and asking about a brain scan if I thought everything was alright. Plus, even if I was feeling better wouldn't it be a good idea to find out what the cause was? Geesh, I just don't get doctors sometimes. One day they say one thing, the next they say another.
Anywho, I just wanted to give a quick update. I'm going back to the clinic to ask him to sign a referral for a private MRI and go from there.
Has anybody else had the same issues when trying to get a dx or is this just a local thing?
Lots of people have spent months or even years trying to get a MS dx...its not always easy to diagnose, and doctors are very hesitant to put that label on people if they arent 100% sure. You should really read up on the McDonald Criteria which is what they have to use in order to dx MS.
Your doctor sounds particularly backwards though...but I will tell you one thing- MS is usually diagnosed once they rule out everything else, so having had as many blood tests as you have had, at least you are ruling out the other stuff. Lupus, Lymes, vitamin deficiencies, electrolyte imbalances, these are important to check...so it wasnt a waste of time.
You definately need to force the issue and get the MRI request. Make sure its of the brain and Cspine (lesions often show up there too) and make sure it is with and without contrast. Contrast wil pick up both active lesions and ones which are too small to see without it.
Hey I wanted to tell you I have had similar symptoms, they don't seem as bad with the near fainting or the burning of the skin, but I have been doing some research and I want you to google CHIARI MALFORMATION. I am not a doctor and am on my own health qwest, but those symptoms seem to mimick those of Chiari. Nervous disorders are complex and MANY if not all have the same symptoms. Do not let any doctor tell you that this is all in your mind, they are just not running all the tests that they could. Anyways, I have had an MRI done two years ago and they said it was normal. Well my regular M.D. who wasn't the neurologist who ordered the MRI found that I am missing what is called a septum Pellucidum on the MRI done two years prior, and that can cause CHIARI MALFORMATION I guess. However I have noticed that thyroid issues can have almost all the same symptoms. Its a hard road, but you will survive it and there is a great chance once you find out what you have you will lead a normal life. They just have to find out whats going on!!