I'm so confused, I went from perfectly healthy 6 to 8 months ago to a complete mess. I never had any symptoms of ms at all. Just 1 day a few months ago I started getting dizzy, then slurred speach, to memory problems, to muscle spasms, to pins and needels, to muscle cramping, to facial numbness, to constant headaches, to developing tmj ect.. I went for a physical and all was normal. I was then refered to a neroloigist who ran 24 different blood test which all came back fine. I then got a cat scan and she found 3 lesions on my brain, 2 in back 1 up front non specific. I go hiking and mountain biking from spring to fall. I'm a 35 year old male living in NJ. I get ticks on me every year and last year I took 1 off and got a big red rash but no bulls eye. I blew it off as not lyme because of no bulls eye. I have to go for a spinal tap this Thursday 3/25. All my lyme test including western blot came back negative. So what I'm asking here is does anyone else think this can still be lyme???? When I questioned the nerologist she got angry and told me it was d*****etly ms. I asked if I could be treated for lyme while we wait for the spinal tap results and she told me outright no. If I want that I need to go to an infectious disease specialist. I went to ask her another question and she then hung up on me. Maybe she is right and it is MS but can it really hurt to treat me for lyme while we wait for the spinal tap results? Also I'm really scared, because how can I go from no symptoms to all in less then 8 months? I'm getting slammed, so if this really is MS I feel like I'm going to be in a wheel chair in a few months. Every day it gets worse and worse. My symptoms change all the time all day long. I'm in so much pain and discomfort, also last 2 days me knees have been giving me sharp needle like pain only when I climb stairs. I know I need to get a different doctor, but i'm looking for people who are going through this to tell me if this sounds like MS. Also she told me the spinal tap would tell us for sure that what I have is MS and not Lyme is this true?
hi Rob. where in NJ are you? IM in Central/ North Jersey- in Hunterdon County; however, with my job, I have access to physicians all over the state, and I can give you some excellent referrals if you need one.
About your questions. First of all, a CT scan can NOT diagnose MS. Only an MRI will truly show the lesions, the placement and where they are. A CT scan is the first test I was given as well. It did show abnomalities, but those were enough to refer me to a Neurologist, who immediatley ordered a MRI of my brain and spine. All my lesions are on my brain.
Secondly, a LP or spinal tap will not conclusively tell you anything. It will show if there are Obands in your spinal fluid. Obands will tell the doctor if you have a history or an active autoimmune disease. 15% of people with MS do not have Obands...so its THAT inconclusive!! What it will do is rule out other infections (brain infections like Meningitis and PML) which present much like MS does...
Third and very important. Almost all Western Blots for Lyme come back negative. Its the single biggest waste of time to have a western blot test for Lyme disease. False Negatives happen most of the time. Look into a lab called Igenex. Its in California, but amazingly enough, almost all infectious disease docs, and Lyme Literate Docs, use this lab because it has amazing results. If you have Lyme, they will tell you! Your blood can be sent there and they will tell you for sure. Its not too late to demand that its sent there.
Now your scared and we all understand that. I suggest that you start over. Start with , first contacting a MS specialist. This is a Neurologist who has a fellowship in MS and his number one priority is geting you the right tests, to either dx or rule out MS. Dont settle for anything less. Second, go on the Lyme Boards here at Health Boards and talk to them about Lyme symptoms. Get some feedback from others who have been dx with Lymes Disease. Yes, the two present very similarily...and sometimes it takes you having to be your own advocate and push and push in order to get answers...but they are out there! You need to start with the right doctor and from what you posted, you havent had nearly enough testing, or anywhere near a MS literate doctor who is steering you in the right direction! Let me know where you are located and I can help you find a good MS specialist or you can contact the MS society and they will send you a list of docs they recommend, based on your county. As for Lymes, Im sure people there (on the Lymes boards) can give you some recommendations. What you need to know is that even if it is MS- you are not going to be disabled overnight. Some of us have had the disease 20 years and are still going strong! This is the time to get dx with MS, because we now have meds available, which werent avialable 12 years ago, which keep us from relapsing and prevent progression. So, it is important that you start figuring this out sooner, rather then putting it off.
Another question for you. Were you offered IV steroids? Solumedrol, which is given thru an IV for 5 days, is the standard immediate treatment for MS related symtoms...if you wait too long to start it, it wont work. However, if you can get those into your system, it will reduce the inflammation which is causing most of your symtoms- if its MS. They wont hurt you to do them even if it isnt...but another week of this, and you wont be a candidate for getting any relief if you try it. MS is scary- however its not fatal, it is manageable and if you do have it, we can help you get thru the initial shock of hearing that you have this. Trust me, we have almost all been where you are. So, get angry and start shouting! Dont know what your insurance is, but if you have private insurance, start making calls and get yourself to another doctor for another opinion. This time start with a MS specialist and/ or a Lyme Literate Doc (usually a division of infectious disease, but not all of them are Lyme Literate).
Let me know what else I can do to help.
Welcome to Health Boards, where you are about to get many of your questions answered!
IF you have Lyme they can test for it. LP's may or may not help. Of those MSers who went through the LP procedure, only 85% showed positive results BUT the results only indicate something neurological happening. I have had 2 LP's 20 years apart- both results were negative. If your neurologist is using the LP for her diagnosis tool, think again. Did you get a CAT or an MRI? The MRI with and without contrast should be used.
I would seek a second opinion if your neurologist has not run proper Lyme tests.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I live in Sussex, NJ, my insurance is Aetna,. I have not been offered anything in treatments for anything. I have to call the doctor to find out anything about my tests. After I get the spinal tap, I was told to wait a week and a half and then call the doctor back. All the while I'm getting worse and worse. At this point if it is MS I'm way past treatment to make me feel better with steroids. This has been going on for 6 to 8 months straight.
I'm also sorry but it was an MRI with and without contrast not a cat scan. All the lyme test were done at quest diagnostics.
Like I said this is my 1st episode, the MRI showed no old lesions and they are only in my brain, 2 in back 1 up front. I havn't seen the MRI because the doctor won't see me since my initial consultation. This is all what I was told over the phone.
Here is my suggestion. Either call Stuart Cook, UMDNJ who heads up the MS Center in Newark, or if you want someone who is going to be nicer but isnt a MS specialist; however has an enormous practice of MSers- Call Manish Viradia in Flemington. Either way, youre going to be driving close to an hour to see them, but unfortunately- there isnt anyone in Sussex Co who is a MS specialist. Cook, has one of the best reputations in NJ. Viradia is simply a really thorough Neurologist, who will walk you thru what you are going thru and offer you MANY suggestions and more importantly LISTEN TO YOU, and send you to a MS specialist if he is undecided or you request a second opinion. He will be easier to get in and see. Your last choice, which is also a good one, is to call Univ Of Pa in philly and go to their MS clinic- its also excellent.
By law, they have to give you copies of your MRIs and tests- so contact whereever you had them done and ask for copies of the films. Youll be able to pick them up. They might be actual films, or burned onto a CD, but you should have them- NOT for YOU to view. Dont even look at them. Just take them to your next doctor appt so they can see what is happeneing. Another thing to know, MRIs can change day to day.....they should be repeated every 6 months. (one more thing, I have over 50 lesions all on my brain, I work 50 hours a week, go to school at the graduate level fulltime and take care of my family- a few lesions is not going to disable you, however, you might have more then you think and without proper meds, you WILL have more in the future). You can also call Quest and ask that they send you all copies of your blood test results OR call this doctor you went to, and ask for both copies of your labs and your report from your MRI and a name of someone who deals with MS specifically.
I am familiar with Sussex Co, and know how backwoods some of the doctors are there, but even so- Ive NEVER heard of someone refusing to see you after the initial consultation! this is the perfect reason why you should get on the horn and start demanding copies of everything and start over with a reputable physician. What you went thru is terrifying- and no one should be treated like that.
The answers are there Rob....but as you'll learn from reading this board, not everyone gets a quick Dx of MS.....because it mimics so many diseases its a tough call; but you definately need the right doctor to help you navigate this.
Please approach with caution. If you do have lyme and go on steriod therapy, the resulting immune suppression could make lyme matters worse.
You've had Exposure & all your symptoms are those also indicative of lyme/neurological lyme. You progression matches far too many stories I've heard.
exposure + clinical symptoms = at the VERY least, find a lyme-literate Md.
It would behoove you to visit the lyme board and ask for assistance in finding a LLMD in your area. It can't hurt to pay a visit to the lyme board, ask for Mds names, and have a LLMD rule lyme out.
Unfortunately, lyme cannot be ruled out by any test currently in existence.
The sensitivity of the conventional lyme tests runs about 46-56%.
THe "better" labs (i.e. Igenex) sensitivity runs about 70%.
For a test to be considered as a diagnostic tool,
it must have a sensitivity of 95% or better.
To give you an idea, HIV testing has a sensitivity of 99.5%. and still people are diagnosed when they are sero-NEGATIVE.
A doctor who sees lyme day-in-and-day-out would need to do a clinical intake with you and assess everything.
A differential diagnosis for lyme with a savvy physician sounds like it would be worth your while. Best of luck to you.
Rob, as I stated in the last post, no one is suggesting steroid therapy, as it is definately too late for you to do it, however I also suggested you go one way or the other, and since your doc is SO SURE its MS, start with either getting a real dx or ruling it out...the docs whose names I gave you are a good place to start with that.
Knowing what I do know about Lymes- I had also suggested you visit the Lyme board and see what they have to say. I did do some research today, and there are no Lyme literate Docs listed in your area, the closest would be Newark or again, Flemington or Philly...and I found one in New Brunswick.
A good MS doc, or even Neurologist will definately be able to steer you towards an infectious disease or LLD (lyme Literate Doc) if they feel that your MS symtoms are NOT MS!! whichever way you go, I think both of us are saying the same thing, that you really need another opinion.
Thanks everyone for all the info, I work in clifton, NJ and know Newark very well so I'll go see Dr. Cook after I get my spinal tap. I leave in an hour to go to Chilton Memorial Hospital, not sure what to expect but I hope all goes well.
new to this today,found this wed site,and been reading some storys on here,this kinda got my eye, seems like you have kinda been some of my issues,i have been to doctor after doctor ,with some of the same issues,i could have ms,,lupus,, tested came back neg''.we will recheck 4-6months,well that never happen,well you may have this ,go to this doc,take this meds,they may help you,its been that way for years with me,so tried of nonsense,i dont go cause i want to ,i would rather feel good ,and enjoy my life,than to stay at a doctor office weekly.but i unstand where ur coming from, its something,or it woulding be happening to us.i get so stress out from all the bull,and i being to wonder if what they give us to take is it safe.i im at a time in my life ,,do i stop all these meds,start over,, find a new doctor,
Rob, let us know how things go for you. Its EXTREMELY important that you remain flat for at least 6-8 hours after the LP. Call Dr Cook asap- it takes awhile to get in, but he is absolutely one of the best in NJ for MS dx and also to rule it out....the man knows what he is doing. Ive known him for years. I tend to stay with my regular Neuro now that Ive been stable for so long, simply because he has such a large MS practice and I trust him...but its good to know Cook is around.
Make sure you start getting all those test results...from the original MRI results and reports (and films) to the LP results and blood work results...unless you want to start over from scratch, they will absolutely NEED them and you dont want to have to wait another few weeks after they tell you to obtain them. Im telling you now, walk in with them, or youre only procrastinating and losing more time getting answers!
Well I got the Spinal tap and all went well. They took 26cc of spinal fluid, does that seem like alot? It seems like a lot to me. I thought I could go to work today but when I walk the top of my butt cheeks hurt. I'm actually working on closing on a house , at 1st when I found out I may have MS I was going to withdraw my offer, but then I decided I'm not going to let any disease dictate my life. I also told my fiancee if she wanted to bail i would understand. She just told me I'm not going anywhere without you and if you need a lift I strap you to my back (God I Love Her) However, I have to go for the house inspection today which isn't going to be too fun.
Sorry to hear about your problems user memom3. I'm not sure what's worse knowing or not being able to find an answer. Only advice I have for you is find a new doctor.
Saw a commercial today with Montel Williams and kind of made my sad, could hear him struggleing with forming words.
Anyways thanks again all for the support and good info, I'm still hoping for lyme, but we shall see. I keep you all up to date and I'll be sure to start collecting my own medical records now too.
Best of Luck memom3, if anyone has advice for her feel free to post it here.
Congratulations on making it through the LP. And a thousand cheers for the attitude towards the disease. And lastly, kudos to you for picking a great lady. Support is important. My wife knew about my MS from the beginning too.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Congrats Rob on the LP...its a huge thing to go thru for some poeple. I wish you all the luck in the world. Having a supportive Fiance is also really important. I had just gotten married when I found out about my dx, and it wasnt easy...but we survived it. Now, things are much easier.
Please do call Cook and get that appt. And, get those results together in case they get you in sooner then later! Keep us posted on how you are doing..
I have done a few Solu-Medrol infusions and have gotten great results from them. I've never heard anything about them not working if you wait too long. I think they're a life-saver and you may want to ask for them. They are given through an IV at the hospital.
I hope you keep posting because I'm interested in what you find out about Lyme Disease.