My symptoms all started about 10 months ago, I woke up one morning with what felt like electrical shocks going through my body, I was tingling all over, went to the ER and they sent me home with Anxiety, to make my first story short, I was this way for 6 weeks, no energy, really weak, tingling and pins and needles but no numbness, went to 3 more er's, none which could tell me what was wrong, did a brain and c-spine mri and they were both normal, neurologist said anxiety as well. My symptoms after 6 longs weeks went away on their own. Now, 10 months later, I have tingling, pins and needles, eye pain, that came for some time ane left, when I swallow it feels like a lump in my throat, I have major floaters, I had trouble focusing with my eyes for a few days but it went away, major muscle weakness, fatigue, face tingles, at night sometimes I'll have some involunitary movements, and just in the last few days I have started to say my words that have "th" in it thicker, very starnge, my legs feel like I've ran a marathon and are real sore, did another brain mri-normal, lyme-negative, and all my blood tests were normal. What in the world is going on with me, I keep thinking it's ms and scarring myself to death, my neuro said its nothing neurological, but how can that be with all my symptoms, just because my mri's are normal, can someone shed some light for me please? Just came back from the Rheumatologist and they said no fibro and no lupus.
Hi M, it sounds like you're having a terrible time, but you should be reassured by the fact that the tests have all come back clear for all the nasty things. I think symptoms like this can be caused by an awful lot of things and they can be made worse by anxiety. A lot of your symptoms have something in common with chronic fatigue syndrome, and there are no doubt loads of other things as well. I've had similar symptoms myself which i believe were triggered by a virus, and my sister, who's a neurologist, tells me to sit it out and try to develop ways of dealing with it psychologically. I must admit that after some test or other, or talking to a neurologist, i feel a lot better for a couple of days. Then the doubts come back. Anyway, that's me. As far as you are concerned I should take some comfort in the fact that a lot of awful things have been excluded, and try to take it easy for a while. I hope you start to feel better, Fiona
Hi and sorry to hear you can't find a "diagnosis".
You currently have so many very familiar symptoms that I share with you along with many many other people that struggle for years until they find out what's wrong with them.
Could it be MS? sounds like it to me in my humble opinion.....I'm sure not a doctor, only a fellow MSer.
does it take a few years to get a clinical diagnosis of MS...YUP!
took me 3 yrs to get mine!
Now after sooo many years of struggling with this disease with no Cure; I began to read and do research on the similarities between MS and Lyme and so many others Fibro, Lupus, ALS etc etc...
found out I got lesions from the lyme disease!
found out lots more too.....
Read about why testing for Lyme is so FLAWED!
Lyme is a clinical diagnosis too.
Floaters? me too, numbness, me too. some days good some days not? yup, Lyme waxes and wanes. Painful lightening strikes? me too. Eye pain? yes, major muscle weakness, yes! restless leg syndrom...yup! crushing fatigue, oh yes!
So you see, I could have Fibro, along with CFS, of course MS, geez lots of things...
I along with so many of us have so many of the same symptoms.......look into the type of lyme test you did have. Was it from a specialty lab that tests for all the bands? More than likely --- NO.
again, most of us do test NEGATIVE for lyme....testing just isn't reliable!
Become your own advocate, read about lyme and the symptoms....search out a lyme literate doctor.....
antibiotics sure are better than steroids! Steroids can really mess you up! Antibiotics can only get rid of the nasty borrelia, and make us feel better.....
The trouble is: all these illnesses have similar symptoms, but it doesn't mean that we have all of these illnesses. For the record, I have foggy feelings and lightheadedness - had them for over a year a few years ago. These are common symptoms which also go with inner ear infections.
There is an alternative explanation here! It's hardly surprising is it that illnesses share symptoms, but it doesn't follow that one has all of the illnesses, and if one has tested negative, well, it's obvious. Sorry, I don't mean to be rude, but some of your previous comments could easily scare the hell out of someone who is already deeply anxious, and i don't think it's fair.
Fiona, that the last comment was by Tory and not me (Marline)
Yes it's very true that the anxiety by all means makes it worst.
Tory, how were you finally diagnosed, did your mri's first come back negative then positive, how in 3 years did they come up with the diagnosis. Also did your symptoms in the beginning come and go with no obvious deficit left?
I just want to know your first symptoms and how they came and left? Also the numbness only happens at night, when I wake up its gone after 2 mins, its not numbness thats there all day long.
As far as lyme the neuro said negative it was a blood test for ANA and Western I believe.
Marline, you are right, and i apologize to Tory if I said the wrong thing. I only know that in my own case anxiety makes everything a hundred times worse. Good luck, and i hope that you find out what is going on. Best wishes. F
I have most of your symptoms as well, and much more. I have been convinced, and still am, it is MS. All my tests are negative. Not one of the 4 neuro's I saw thought it was MS. The symptoms are present 24/7 and change from minute to minute, hour to hour.
Fiona, this board is for people to ask questions and help each other. If the responses make someone anxious or scared then I suggest they do not come to this site and read them. I think we are all anxious and scared about what we have.
I really need to know what I have for my own sanity as well as for future planning. I work part-time. If the day comes I can't work, I don't even have a diagnosis other than fibromyalgia. If any of us should need disability we have to have a legitimate diagnosis. Also....all the doctors say it's not MS. The only way I can get this out of my mind is to know what it actually is. Negative testing is good but adds more fear and uncertainty. I am planning to see a lyme doctor soon. It's hard to find one, expensive etc......I find it just so angering that I have insurance but have to travel out of state and pay out of pocket to see anyone who knows anything about lyme. As I think I told you in the past, I do have a history of 3 bullseye rashes back in 1992...followed by a whole slew of symptoms including a neurologic syndrome like I am in now. It lasted for years then seemed to go into remission. I did take a short course of antibiotics (about 4 months) which did help some. I'm just so tired of it all.....
It sounds by your above post that it took 3 years to diagnose you because they never did an MRI. I wonder if they would have diagnosed it sooner if they had done it when you first had symptoms.
Do you have pain??? I have severe pain all down my spine, neck ribs etc.. and else where.
I realize how important it is to get some sort of diagnosis! I do hope for your sake you begin to read about Lyme and the similarities with MS. There is conclusive studies that talk about what the "cause" is of MS.
I can only say, if you should finally be diagnosed with MS - then what? there is no cure! only a hope of not progressing.
I am also getting tested for MS after being struck w extreme weakness ( thought i wa sdying, cold aweats, head pressure and all came on suddenly , but did have burning in feet and legs a yr before that. I have been very ill since sumemr of 200 6, cannot drive and get dizzy ., Saw neuro and he thought maybe brain tumor w the two lesions, since then they have become less prominent and no tumor but no diagnosis either, seeing MS specialist soon, he think s maybe that. From way the MRI of brain looks. Husband suddenly left me after brain spots and i am still devasted, Beautiful girl and did eveeything for this man. sorry..... very hard day today. Anyway, good luck to you, don;t give up, K
I need to stress and will continue to stress how UNreliable lyme tests ARE! Most people who finally are treated for lyme have had a NEGATIVE lyme test! Me included.
Testing for lyme is flawed. Diagnosing lyme is a clinical diagnosis! Just like diagnosing MS.
For me it took 3 yrs to have a MS diagnosis. Any good MS specialist won't diagnosis on a first visit...they can tell you they think, but they will wait for another excasberation etc!
I had extreme nystagmus as a first symptom. Streoids eventually fixed me right up! arghhh
Three yrs later I was numb and lost coordination on my left side. and I'm left handed. I also had a whopping case of Trigeminal Neuralgia. My MS specialists sent me for 3 MRI's brain upper, cervical, and thorasic. With and without gadolinum. These MRI's showed lesions! So, I was diagnosed. Also, back then pain with MS was unheard of. So, to be sure they sent me for a CT scan to rule out a brain tumor because of the Trigeminal Neuralgia.
No brain tumor. Things have changed since then, and the term TN is now widely associated with MS!
marline: I never said my MRI's were negative then positive. I was tested 3 yrs after my first "symptoms". Very typical in making a MS diagnosis. and yes, symptoms do come and go with MS, and full recovery? some of us do fully gain everything back, some don't. They use the word remission. and depending on how many episodes the then use the phrase relaping remitting-which is where I fit in.
If you read about lyme and MS you will see the symptoms mirror each other! I am a perfect example of that....L'Hermittes, brain fog, numbness, tingles, loss of coordination, floaters,rib pain, neck pain, joint pain, I can go on an on.
Many, many, many people take their inital lyme test as the last word, and continue to "not" figure out what is wrong. Then there are others that educate themselves, insist on a lab that tests for all the bands, see a doctor educated in lyme and takes an antibioic challenge! We decided to allow our bodies tell us of if in fact we harbor the bacteria borrelia! This is called a Herxheimer reaction.
fiona1: Please stop scaring people! anyone who digs deep enough, can get their answer. It's unfortunate but there isn't any test that is conclusive!
The CDC states this on their website! When someone says I've been tested for lyme, and it came back negative; we in the lyme community say join the club!
One more thing: anxiety is certainly a very common symptom of lyme.
I can only offer this as an opportunity to make good choices!
I only wish I had this opportunity given to me, because I spent hours and hours reading and researching the MS/Lyme connection.
Do I think everyone has LYme? of course not...but again let me say that many of us are tested.......with a negative result, and yet don't have the correct answer!
Thankfully, I am finally on my way back to health!
Congrats on the decision to see a llmd! I really mean that. As for being upset about needing to go out of state and out of pocket; believe me I'm with you. I do exactly the same thing! My choice to go out of state though, I just decided to see what I consider to be one of the best. Lots of time just to get there, but again worth it!
I don't want to belabor this point, but I feel strongly-IMO- that Fibro and MS aren't diagnosis'. Let me clarify, conventional medicine and conventional insurance standards have us believing they are diagnosis'. Truth be told they are simply "symptoms". What is there cause? What is there cure? That's the question!
So far, with both, the answer is " don't know" - "don't have one" ! But they both have symptoms. That's for sure.
I have MS. "Multiple Scaring"...and MS' symptoms are long, and I have just about every symptom that goes with MS, I also have a lot of Fibro symptoms.....
As for your question about pain, yes, I have pain. Mine is neck pain and I have Trigeminal Neuralgia...VerY PainFul...some joint pain too.
And lastly, when anyone that goes to a MS specialist, a neurologist, or whatever you want to call someone that is versed in MS...no doctor diagnosis MS on the first visit. That doesn't happen. Or I ahould say it didn't happen in 1987...they wait at least for a second episode. That's just a normal procedure. And if you think about it, it makes sense. What's the hurry? There's no cure, and back in 1987 they didn't even have drugs to hope to "halt" the disease. So, with that said, would some of these neuros all these years later MayBe send a new patient for a Spinal and/or MRI? on the first visit?, Don't know, maybe, but I wonder.
I also selected 2 very distinguished neurologist in Phila to see. Spent lots of out of pocket and time for see them. but, I was in VERY good hands!
The reason I didn't get a diagnosis for 3 years is: I didn't have an excasberation until 3 years later...! Lucky me. and that's what MS is umm lyme symptoms waxes and wanes...we go into remission, some things improve, some almost improve, some don't improve at all.
Just saw my llmd today, and I decided that as soon as I go back for my MRI's (all 3 of them) and I can show them that my lesions have diminished or perhaps even vanished, I intend to re-visit my very distinguished neuros and show them what got me well, another words, I intend to share my education.
Patsy, have you posted your story on lymenetdotorg? Many, many Fibro folks there now feeling better. You might want to think about posting in the Medical Questions section..tell them about you and wait for responses. There is also a Seeking a Doctor section, if you need help on getting a qualified doctor. I hope that if you are going forward with this you realize that IF you will be getting tested it a Western Blot by a lab in Palo Alto California that checks for all the bands, OR simply do an antibiotic challenge....for 6 weeks, if you feel rather crappy...there's your answer! Sometimes, just getting on an antibiotic is the easiest thing to do?!
Brings to mind that I was speaking to a patient as we were waiting and she also has MS. We spoke and compared how we are doing, and finally I asked her how she came to realize it was lyme, she said that she got an infection, was given an antibiotic, felt like ****, started researching on the internet, went back to her Yale neuro (very esteemed) told him and he prescribed "ANTIBIOTICS"! no questions asked...That made her really angry, found this llmd and has never went back to this neuro!
I wish you so much success, and please stay in touch!
Thanks Tory. I have posted on LN. I posted a couple weeks ago to see if there were any new doctors close by. There weren't. I am seeing the llmd on Tuesday. I have to travel to Pa. I live in Ohio. Sounds like this is your state. My symptoms don't relapse. I have constant 24/7 symptoms. They do vary in intensity and move all around to different places literally by the minute or hour. How much better are you, and how long have you been in treatment?
Great news, sorry you have to travel to see a doc, but so many of us do. Yes, I live in PA but also travel 3.5 hrs to see my doc! Well worth it!
I'm only in treatment since Nov '06. I'm doing OK, it's not easy getting well.
but remember, I was considered benign with MS. Only had limited flare ups...but when they came they were good ones!
I'm considered a neuro lymie, and many of us are, because of "how long" we've been infected! I have demylination..and that can be trying to get that back...but I read and talk to so many others that are considered progressive MS'ers and my heart goes out to them. They have so much more of an upward hill to climb!
I can't wait to hear your news and let me know who things went.
It's so cool to add another in the get well column!
Two weeks ago I woke up with my legs asleep, they woke up quickly. A few days later I woke up with only my right leg asleep, again woke up quickly. Two times this week I have woken up with the pinky finger on my right hand asleep, both times it woke up quickly but I am wondering if these are symptoms of ms?
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