I am very sorry to hear that you are experiencing all of these problems! You have found a great forum to get feedback and support. We're not doctors (for the most part, anyway), but most of us have a great deal of experience with MS and/or the types of symptoms that you are dealing with.
Your internal medicine doctor sounds like a keeper--I'm happy to hear that you feel confident in him/her. How long have you been seeing your neurologist? Probably by the second meeting, you should have had many blood tests to rule out the mimics of MS: B12 deficiency, Lymes, lupus, hypothyroidism, lupus, Sjogren's, Bechet's, etc.
There can be other lots of causes of your symptoms. Did you do the tilt table test? A dysfunction in your autonomic nervous system can cause many problems. My sister had this test prior to her diagnosis. It was found that she did have an autonomic nervous system problem.
Before my diagnosis, not only did I have blood tests--I believe, if I can remember correctly, that is was like 14 vials of blood taken from me, MRIs, LP, etc., the doctor even ruled out other diseases/problems with a CT of my lungs and an echocardiogram of my heart! I don't know how these are related to the symptoms I was having, but a good neuro will look into all sorts of possibilities by listening to the patient's history and the findings (or lack of findings) in the examination.
Even if you don't have MS or your symptoms point away from it, it's a good place to hang out and learn about neurological symptoms and get support. I hope to hear from you soon.
hang in there and you have found the best place to share your problems; we may not be the experts but we love to listen and share!
Thank you all so much for the warm welcome. :) I think that you're right, even if it ends up and I don't have MS, I still feel like this is a good place to come and get lots of answers about nuero problems.
To answer some of your questions Deb, I have been under the care of my nuero for about three weeks. I have only seen him once. He said first he was going to rule out MS, and then go to autonomic dysfunction. The funny thing is, I haven't really had a TON of bloodwork done, I mean they took about 4 vials of blood (in which I almost passed out) and checked for all kinds of things, Lyme I know was one of them. When I go back to my internal medicine doc I have a feeling that he is going to want to take some more blood to see maybe what else he can find. I actually just found this internal medicine doc, recommended by a friend, and really glad I did.
He ordered an ECHO, but honestly I think i might have forgot about the appointment. :( I have been feeling so bad this week that I have pretty much done nothing and I think I forgot to write it down. So looks like we will be rescheduling that. Haha.
As far as the tilt table test, when they called me back with the results for the MRI the girl actually said that they wanted to do one and that the cardiologist would be calling me within the next couple of days. I am not sure that I am going to go through with it... mainly because I am so scared but also because I have been keeping a very close check on my blood pressure and the numbers haven't really been changing. My heartrate does change, especially when I stand, but my blood pressure has never gone below 125 SYS since I've been taking it. Oddly enough this week though, I have had a few of these pass out sensations, where I feel almost like I am 'not going to make it' in whatever I am doing, but I end up fine. I have checked my blood pressure during those feelings and it is either always up or normal. Never down. So I am wondering if maybe I should get a second opinion about the TTT from my internal or what. The main thing is right now I feel so weird/dreamy that I don't want to induce anything to make me feel even worse, even though I know that the TTT might actually help rule out some stuff, I am just very scared. I had one person to suggest maybe to have it done without the IV fluids (nitroglycerin or whatever they use) and just see if they can find anything that way.
I am also sleep deprived. I haven't been sleeping at all, and I know that lack of sleep can cause many weird things to your body. My internal gave me some Lunesta to try, and I have been very scared to take it for fear of weird side effects that I might have, but I broke down and took it last night just to see if it would help me, in which it kind of did. I didn't get to good sleep until about 2AM and I took it around 9PM. But I am going to try to take it over the next few days to see if it will work better as I go.
Thank you so much! Looking forward to talking and sharing! :)
Also Deb, did they find any lesions on your MRI? The nuero felt very strongly that I didn't have MS, but he did the MRI just to make sure, but I know there are cases that don't show up on MRI. Also, it seems that I am more generally fatigued now, but I can still feel it a little stronger on my left side than in my right.
I bet the heat of the summer doesn't help your neurological symptoms one bit, either! I am wondering something. Have you had a thyroid test with your bloodwork? Your heart rate, bloodwork, neurological symptoms, shakiness, fatigue, lack of sleep, eye issues, etc. seem to go along with a thyroid disorder or metabolic symptom. Your symptoms seem to support hyperthyroidism. I have the oppositie--hypothyroidism. I have problems with my blood pressure, irregular heart beat, fatigue, cognitive issues. Hashimoto's is an autoimmune disorder. It typically starts out as hyperthyroidism before turning into hypothyroidsm. As it turns out, many people with MS, from what I've learned in this forum, have thyroid disease. I probably had hyperthyroidism when I was younger because I was very thin and just couldn't gain weight. Well, enough of the thyroid stuff. Your tests probably normal and I'm just rambling on and on about it.
The echocardiogram will rule out a few things, too. They found something on it, and I can't remember what it was--but it was minor and was not going to be an issue. My sister had the tilt table test, and someone is with you the whole time. She does have some autonomic dysfunction that the neuro said to her that probably goes along with her MS. I would explain your fear to the cardiologist before you start the test. Maybe he will stick around in the room to help relieve the anxiety about the test. Maybe have someone go with you, too.
To answer your question about the MRI. My first MRI was negative. When I had the first one, my GP order it and was not looking specifically for MS. He ordered it to rule out a brain tumor. I was having many headaches and had an array of symptoms. The MRI I had was done on a weak open MRI machine. Lots of things can be missed when MS protocol isn't used. My second MRI on a 1.5T machine with MS protocol two years later, revealed lesions--at that time the neuro said that I had a demyelinating disease because of lesions around the corpus callosum. Six months later, even more lesions and the growth of the lesions that I had. I was diagnosed the day that the neuro went over that MRI.
My sister had a very difficult time getting her diagnosis. Her first MRI was read as normal. She went to several neurologists. Finally, she gets another MRI of the brain and C-spine. Her lesions were found in her brain stem. She is quite a bit more disabled than me and cannot walk. It's amazing that the neurologists didn't find anything, but from what I understand is that sometimes brain stem lesions are hard to spot. Now she has lesions spotted on the other parts of her brain and even black holes and is on a Tysabri infusion that she receives once a month.
I'm sorry if I'm rambling, but wanted to kind of answer your question about the MRI. Yes, it is possible to miss MRI lesions. Sometimes, especially early on, they are just not ready to show on the MRI. Additionally, sometimes the radiologist misses them. My radiologist report differed from what my neurologist saw when he went over the MRI in his office the day of my diagnosis. The neurologist should go over the MRI with you looking over his shoulder.
There are lots of great health pages on this site written mostly by a doctor (formerly a pediatrician) that frequently posts on this forum and was one of the founds of the forum named Quix. She is very knowledgeable and has quite a story herself. I'm going to attach a link to one of the pages that she has written. There are other really good ones. If you go up to the upper right-hand corner of this page, you'll see other good ones.
I would get a copy of all of your bloodwork, MRI report and the actual MRI on CD/DVD. Start keeping records for yourself. I'm not saying you have MS, but the kinds of symptoms you're having need an explanation.
Wishing you the best, my friend. Hoping you're feeling better today.
Thank you so much for all of your information. I feel like you are going to be a great source through all of this.
Actually, I have not had any thyroid tests done. I have been seriously thinking about it, and it is going to be the first thing that I mention to my doctor when I go back for my next appointment, because I agree some of my symptoms do line up with hyperthyroidism. Very interesting. Is your blood pressure/heartrate up or down? So I guess I need to definitely have that test done.
I have actually been doing (so far) a pretty fabulous job of keeping up with my own records. Granted I haven't gotten any of the imaging studies for myself, but I do certainly have all of my bloodwork that I've had done and also my ER visit record which has EKG results and lots of other fun stuff with it.
I am having a real problem with the disreality feeling that I am having... it feels like I am not here... like I am in a dream. I would really, really love to get that eased up before I continue on with stuff... because it is the most debilitating symptom that I am having. Back when I was having this feeling in 2006... when I was about 14 or 15... I went to so many specialists, and they could never find anything, so I went to a psyche who prescribed me Lexapro and it actually helped me alot. So I am thinking that I might ask my doctor if I could possibly get on that rather than this Wellbutrin that I am on now.
It is interesting to note that over the last few days, I have noticed that the weakness in my left side is less pronounced. I am not sure if it has to do with the fact that I am just so tired and fatigued in my entire body or what, but I have seemed to notice it less. I have noticed though that my left foot seems to go to sleep quicker for some reason than my right. If I am sitting in one spot for a long time, like with my legs criss cross apple-sauce, it will go to sleep quicker, maybe in, I don't know, 15 or 20 minutes or so?
About my MRI, my neurologist ordered it, and it was in a GE 1.5T closed with my entire head and C and T spines I think. So it was pretty much my entire body minus my legs. Do you think that was sufficient? I think you are right though... I should definitely get a copy of it... How much did you have to pay for that?
I definitely agree though... it is just awful Deb!! I do not know what to do... If only I could have some type of relief. Everyday I wake up and just feel so awful. I did actually get some sleep last night thanks to Lunesta (was so scared but it is seeming to help and no sleep walking so YAY! haha) so maybe getting some good sleep over the next few days will help me to start to calm down a little bit. I think my body is just very tired at this point.
thank you so much for all of your well wishes.
Any more comment/thoughts from you Deb or anybody else are so welcomed, I never ever get tired of commenting or posting back... it kind of gets my mind off how I am feeling for a little while.
And also Deb... Do you have any experience of knowledge with how long a flair up could last? I mean... I have been having these symptoms for over a month now... and the only real thing that has gotten worse is the feeling of disreality... my strength, ability to walk fine, etc all are fine. It is the increased heart rate and blood pressure that have got me concerned.
Also deb (sorry I keep adding things!!)...
In my blood work, my lymphocyte count has been just below the low range, averaging about 14%.... do the Thyroid T3 and T4 cells fall into this lymphocyte range? Because if so... I think we could possibly have an answer. :)
Just to welcome you to the forum and say hi. I am sorry that you are going through all this and experiencing so many confusing symptoms. I sense that you are quite anxious about everything and all I can say is that it is necessary to go through the testing to enable the doctors to hopefully understand what may be going on in your body.
It is good news that your MRI's appeared to be normal as you certainly do not want MS so all I can say is keep an open mind, try and be patient and keep us posted as to how you get on.
With best wishes
The tests that your doctor should order to find thyroid dysfunction are the TSH, T3, and T4. With the symptoms you have, I'm surprised that you haven't had this test! Thyroid disease is a great mimic of MS and can cause neurological symptoms. BTW, I forgot to mention that a goiter on the thyroid can cause swallowing issues, too. Hyperthyroidism and hypothyroidism can cause heart rate problems. I do have blood pressure issues. I have to take medicine for this, too. I noticed the problem in my mid-20's and thought it was related to pregnancy, but I continued to have problems ever since then.
Flare-ups for people with MS is a new symptom or worsening of a symptom that lasts over 24 hours. I've had symptoms that would come and go that would last two weeks that weren't always consistently there that would be considered as a relapse. Some people have relapses that last months and some just over 24 hours. Some symptoms last forever, some lessen, some go away altogether.
It is certainly wonderful to hear that your brain MRI is negative. Having no lesions in your brain or spinal cord completed probably with MS protocol on a closed machine 1.5T or greater does lessen your chance for having MS and is a really good thing. Having said this, it doesn't lessen the urgency that your doctor(s) need to get to the bottom of what's causing your symptoms. Just because it may not be MS doesn't mean that it can't be serious or disabling. Cognitive issues are certainly disabling. This has been a very big problem for me, so I know exactly how you must feel.
Keep posting away! It doesn't bother anyone in the least. Plus, many gain a lot of insight from reading the experience of others--I know I do.
Thank you so much for your well wishes. I have seen some positive things, while others seem to be the same, but I am trying to keep as positive as I can. As you know it can be very difficult to do sometimes, but you have to to keep moving on! Yes, my MRI results were very reassuring to a point, but I still do not know what is going on, so that is not the best answer. But no news is good news I suppose! I just want to know what is wrong with me so I can fix it. :(
I know, I thought it was very interesting also that I haven't gotten those tests done, I am almost regretting not getting them done when I was in the office last week. I am definitely going this week to get them done though. I know that I am having symptoms of depression too.. I just feel like I can't go on anymore! But I am, and I will continue to.
That is very interesting about the flare ups. I am still wondering about MS... but as we have said... the negative MRI is definitely a good sign. What kind of cognitive issues to you have? What do you do when you are frustrated beyond imagination, and don't know what do to do anymore? I need some things that I can do to kind of calm me down, let me know everything is going to be okay. I am definitely going to read tonight, but what else helps you? What do you recommend? I think I have had a major problem in looking stuff up... today I scared myself silly with some of the things that I found. :( I know that I have to stop doing that.
The cognitive issues for me are the worst and most disabling symptom. It is funny how MS affects people differently. For some (like my sister), it affects people more physically. I do have physical symptoms, but I'm mobile and don't expect to not be in the future. You never know, though, because MS is so unpredictable, but I have this feeling about it. Plus, most people with MS do not end up in wheelchairs.
The cognitive issues are a battle for me. There are medications to help with this. I used to take Provigil which helped with the fatigue and cognitive problems. Medications sometimes get a black eye, but I cannot function without them. I was taking Provigil for a long time until my insurance company said no to them. In fact, I started Provigil before my diagnosis (I think six months prior to). I'm taking Ritalin now, but it's not strong enough. I will be seeing my neurologist next Monday, so I will be talking to him about it.
I have a very serious issue wth cognitive problems. When I write them, down they sound worse than they probably are. Presently, I'm having a real issue. Thankfully, I'm seeing my neuro soon. Basically, I"m a space cadet. Someone can be talking to me, and I will not even know it but I will be looking of somewhere else. I sometimes catch myself, but there's many times that I don't. Additionally, I can only pay attention to a sentence or two at a time, otherwise I don't understand what is being said to me. Understanding crowds make it almost impossible. I cannot understand anyone in a crowd. This could be related to my hearing problems, but it could very well be cognitive. Lastly, I am very forgetful. I've had very, very embarrasing moments with this If I'm not taking medication, I cannot get up in front of a group of people to speak. I forget what I'm going to say when I need to say it.
As I mentioned, there's medications to help. With a fast heart rate, it will probably rule out a couple of options for you (like Ritalin), but not all. Provigil made me feel way better. It took a few weeks and possibly a month or two to get used to the feeling of the medication, but after that, I felt halfway human.
I understand the feeling of frustration, too. I was undiagnosed for years. I made the mistake of focusing too much on my health--which is so, so easy to do because I felt like poop all of the time. I just wanted to unlock the mystery as to what was causing me to feel so bad and get the magic treatment to fix me up! I talked to others--my family, friends, etc. They help a little bit, but then after a few years a giant wall was built up. They finally got tired of listening to me! I thought I was being positive about it all, but they were just a sick hearing about stuff as I was physically sick myself. Frustation, disappointment, bewilderment, and depression set in.
I guess the best thing to do is to find a diversion--something that will really drive you away from thinking about things, a passion. For me now, it's painting. I go to museums research, taking lessons, etc. I also like to help others. Getting involved in church, book club, gym, etc. may help. For some people, exercising really helps. Additionally, when you are finding yourself depressed, seek the care of your doctor. There's no need to suffer when great medications are available. I can literally feel the depression chemical when it's released in my bloodstream. I hate it, and it is also very disabling.
I've written a book. I'm sorry about the length of my posts!
I just reread this, which I should have done before I posted, and it's a mess. Hopefully, you can weed through this mess (if you want to) to figure out what I was saying. Sorry about that!
Off to bed I go!
Hello Deb (and everyone)...
Just wanted to give an update.
First of all Deb, I completely I understood your post, please dont think you're posting too much! I love the feedback and interesting information so please keep it coming.
Yesterday I went for some new bloodwork. My doctor ordered a pleathera of things but the main thing I am excited about is the thyroid stuff. So we will see when they come back. They took at least 6 vials of blood so I am sure they will find a little something if anything. And the lab I went do does electronic results so I will get the lab reports emailed to me! Imagine that!! :)
My doctor's office is in the same building as the lab so I dropped by after my blood tests to talk to the nurse because I just didn't want to suffer through the weekend... I'm tired of feeling awful and not being able to do anything about it. So I told her this and she said she would call me back... Which she finally did.
The doctor is changing me from Wellbutrin to Cymbalta 30mg. She said if I need to take an Ativan I can also do so. I am out so I am hoping that they will do a refill for me for that also.
There are a couple of things that are concerning me, and Deb and everybody, I would like your feedback and thoughts on these things.
Firstly, I am having these vibration like feelings going through my body. It is not really a tremor, as most of the time you cannot see my body shaking. But if you put your hand on my leg and sometimes my arm you can feel very deep pulses almost. They're faster than my heartbeat. I am not sure if I would call it a tremor but it feels very strange. I started experiencing it last week and I seem to be noticing it more this week.
I am also having some weakness in my hands. They feel stiff. Not sure if this goes along with the general body fatigue...? But I have definitely noticed it more this week.
Also the fullness feeling in the left side of my body... It seemed to come and go a few days ago and now it kind if seems to be staying with me. I haven't had any pain with it really at all... But it is concerning me a bit because I feel like the area around my lower rib cage is swollen. My mom and sister sister both said they didn't see anything but I can feel that it is very very slightly swollen. My stomach keeps growling and it kind of seems like it growls a little every so often kind of toward the side... Could this be GAS??! I mean, I just don't know what to think about it. But like I said said have pretty much had it since I've been sick!
Also having chest tightness/heavyness. Not sure if it's nerves or really something to worry about. I haven't really been having trouble breathing.. Just the sensation that my chest is heavy.
I am wondering if I should make a trip down to the ER just to get them to image my abdomen and see if they see anything.. I would really love to have an ultrasound done on it but can an ER order stuff like that??
Has anybody used Cymbalta, and if so how did you like it? Doc said it would help with shakiness/vibration feelings so I will be taking it shortly when I get out of bed!
I am so tired. :( and also tired of not feeling well.
thanks for any info y'all can provide!
I'm sorry you're not feeling better. I would say that perhaps an urgent care facility may be able to put some of your anxiety at rest. Sometimes anxiety will cause the heaviness and tightness in the chest. You are probably quite anxious about some of the weird symptoms you're experiencing.
If you go to an urgent care center, maybe they can do an x-ray of your abdomen to see if you have fluid, gas, an internal organ swelling, etc. Either way, I think you are justified in going to an urgent care center based solely on the chest heaviness and fullness. It could be very well be anxiety, but it's better left for the judgement of a doctor. Maybe something will show up, too, in your blood work that will give a clue as to what is going on.
I am keeping my fingers crossed that they will find some clue soon. Keep me posted.
Take care, my friend.
Hey Deb and everybody.
Most of the bloodwork that I got done on Wednesday is back, and everything is normal.
There are some other people of several forums that I have posted in suggesting that I insist on more Thyroid testing. I am not sure if it will help... but I guess it could be a start. Neurologist's office called and said that the Doctor is STILL insisting on doing the tilt table test. Not sure why he's obsessed with it. Obviously they are not too concerned because it has been a week and a half and haven't heard from the cardiologist. I don't really appreciate their attitude or service.
I ended up not going to the ER or clinic or anything because I figured I would just wait on the thorough bloodwork to come back, in which it did, and there was nothing wrong.
And also, when I took my anxiety medication last night it seemed to ease the breathing/heavyness in my chest.... so maybe this all has something to do with stress... I have no idea though. I wanted the blood work to find something so bad, and now I am back to square one pretty much... so depressing. :(
I took my last Ativan last night and was so scared that I wouldn't be able to get it refilled because it was originally prescribed to me from my MRI... but it is the only thing that has helped me during this entire ordeal... and thankfully the nurse was able to talk the doctor into giving me some... I told him about all the stuff I have gone through lately with tornadoes in my area and stuff... so I think he sympathizes.
The nurse's exact words when I talked to her:
"Your blood work all seems to be normal, but some hasn't come back... but we're digging to get to the bottom of this Taylor!"
made me feel a smidge better.
Hi Taylor, one of the hardest things to keep in mind during this journey is how much patience it takes. Neurological time slows to a crawl - I find it almost as slow as geologic time.. Ok, that's an exageration, but it does take a long time to get appointments and even longer to get answers.
Hold the steady course and keep working with these doctors to find your answers,
Durn it! I was hoping that your doctor would find something that could easily be fixed with medicine . . .
Hang in there. It sounds like our doctor will find something--they seem to have the right attitude, anyway.
Hi All! Just wanted to give you an update on what has gone on over the last few days.
I went back to the internal medicine doctor on monday. He said that I looked better (which i will take as good news, right?) :)
He did say that he was not happy with my vitamin B12 levels, it was around 480. So I am doing a weekly nose spray and taking B12 lozenges everyday. Not sure what good that is going to do but hoping that helps.
He switched me from Cymbalta to Lexapro, which is what I was on when I was 14 and 15 for the foggy feeling. I have been taking it for a week with no difference, but I am going to give this one some time since I know it worked well for me the last time.
I told him that I was concerned about the weak feeling my heart was having and also about the fullness feeling I was having in my side, and he said it would be no problem to do an Ultrasound and ECHO. So I had those done Tuesday and Wednesday, respectively. Waiting to hear the results on both of those. Just so grateful that my internal medicine doc is allowing me to do whatever it takes to get some peace of mind. I really really like him. Even though his office is a real pain to get a hold of over the phone.
I got the last little bit of bloodwork that hadn't come back when I went to the doctor back a few days ago, and my vitamin B6 level seems to be a bit high, about 10 points above the normal range. Anybody know what that could indicate?
Ugh. Still not seeing any major improvement. Wanting to be me again so bad. hoping these meds will help my mind a bit.
any comments are very welcomed as usual!!
What do they do when they do the tilt table thingy?
Hi all again! Just wanted to give you a very quick update.
Results from Ultrasound and ECHO are both back.
ECHO was fine, but Ultrasound revealed an enlarged spleen.
My doctor thinks it could be a relapse of Mono. which I had about a year ago. They want to do more bloodwork to see if it could be EBV or the actual mono flaring. It would explain why I've felt bad for over two months, and especially the full feeling in my left side, which is the swollen spleen.
Sarah, in a tilt table test, they monitor your blood pressure and vitals while basically emulating you standing up and laying down for extended periods, to check for orthostatic intolerance.
Still not feeling any better at all. :(
Had a lightheaded spell yesterday that really scared me, although I think it was because I was up trying to do too much and had not had anything to eat or drink.
Just throwing a random idea out there but do you have any silver (amalgram) fillings? Half of the silver fillings in your teeth have mercury in them and just 1 of those fillings carry as much mercury as a thermometer! If you look up /mercury poisening it can cause a lot of symptoms and people that have been having a hard time finding answers to their health problems have found this playing a role in it. Anytime you chew on those fillings it releases some mercury. Have you had any fillings chip? Or do you have a lot of fillings? I would consider getting them removed (if you do) and do a charcoal/clay detox to rid your body of any metals and it may make you feel somewhat better if not completely?
oops i didnt see your last post :) sounds like you may have a good start as to whats causing you to feel so bad, good luck and keep us updated :)
That is actually really interesting. I have never even thought about that. I went and did some reading on it and from what I found it can play a role in autoimmune disorders. Very very interesting!! I only have one amalgram filling so I guess there probably wouldn't be too much mercury leaking out but it is still very very interesting. Thanks for the info!!
I am going for bloodwork today, so here we go again.