MS Symptoms, Negative Diagnosis

I have a pretty good idea that you might have a B12 deficiency. You can go to the drug store and purchase 2000(?) Mcg Sublingual B12 vitamins. If this is the problem - you should notice an improvement very quickly.

I just want to provide a few more examples from my own life to show you how MRIs, hearing tests, etc., can all be wrong, or maybe one is right, but there's no way to know for sure unless you know everything there is to know.

I was terribly ill in 2003 with what felt like bronchial pneumonia and suffocating, and was diagnosed by five different doctors and X-ray technicians based on chest X-rays done over a 32-hour period with everything from bronchitis to a pneumomediastinum. Weeks later, a pulmonologist diagnosed me with asthma, but years later when I had the same symptoms and hoped for death because I was so exhausted from chest tightness, etc., the same pulmonologist said I did not have asthma (clearly, he didn't revisit the past) but had vocal chord dysfunction.

About 2005, based on X-rays, a dentist informed me that the screw of a dental implant was broken inside my sinus cavity and that I had to have it removed immediately because I had an infection and there was no telling how long the screw had been broken. I asked him to show me the X-rays, and sure enough, it appeared that the dental implant screw was broken.

I asked him to perform the procedure, but he wouldn't. He brought in a specialist he knew who he said might do the procedure, but that dentist wouldn't do it either. They insisted I return to the dentist/periodontist/orthodontist, etc., who had performed the initial procedure, which years earlier came after countless procedures, much misery and thousands of dollars when -- surprise, surprise -- I lost a great deal of my upper gum tissue to a case of necrotizing fasciitis, initially unrecognized and undiagnosed (and therefore left to spread) by my then-dentist.

I then went to one of the periodontists, who told me that what appeared to be a broken screw was something entirely different. Afterward, I went to numerous dentists and periodontists who were not in any way involved with the years of torture, and each gave me a different result based on ... you guessed it, X-rays of the same area taken at the same angle.

A few years ago, I suddenly lost the hearing in my right ear, which adversely affected my already poor balance and vision, and was diagnosed by an urgent care physician, an E.R. doctor, an E.N.T., a couple of nurse practitioners, an internal medicine M.D., and two audiologists with everything from "swimmer's ear" to a large ball of wax to a brain tumor. Whatever it is/was, I still have it, and although I haven't adjusted very well, until someone gets better training in the use of an otoscope, I'm done.

So while some of those who responded (I didn't get a chance to read them all; I'm sorry) say you have CFS, ME, lupus, lyme, fibromyalgia, a cold, Alice in Wonderland Syndrome (it's a real thing), I say it's up to you, unfortunately, to learn what you can and do what you think is right. It may take years without an answer, always being on the edge of incapacity, or you'll have to keep getting worse (like my mom and now me) before you get a fairly certain diagnosis.

My mother was diagnosed with relapsing-remitting M.S., but it took 30 years before she was diagnosed despite receiving numerous MRIs. It then took nearly 50 years before a competent opthalmologist/eye M.D. diagnosed her optic neuritis!

I think maybe this is because more so today than in the past, people enter the healthcare field solely for money, because so many people have been doing their jobs for so long that they no longer care, and/or they expect specific results and thus don't bother taking a closer look.

I'm convinced that there are numerous other conditions with the same symptoms (the human body can only be symptomatic in so many ways) that have yet to be diagnosed because no one is looking for the cause (viral, bacterial, hormonal, environmental, a combination, etc.) and/or even ponders that there might be a different cause.

Why bother? Women's bodies are so complicated, unlike men's (sarcasm). I am also convinced that doctors of both genders are dismissive of women's symptoms because our society still considers women inferior.

Kat

You have ME don't torture yourself any longer. The difference between ME and MS is a negative MRI.

If the MRI's said you did not have MS. Then you do not. The MRI's lighten the area in which demyelination occurs (which causes MS). Other disease which you and your doctor can look into is Lyme, Lupus, and Mono. If the Cymbalta doesn't help, you should look into homeopathic medicine (it worked for me). For the tingling and numbness situtation you can try to put your hand in a bowl of dried rice, grap the rice, and massage the rice into your hands (suggested by my hand therapist, worked okay for me) Goodluck.

Hello jewels2970. Thanks for sharing your situation. I suspect that Lyme disease is what you are dealing with. Even though I do not live anywhere remotely close to possible tick territory, it was one of the 'conditions' tested when they did the spinal tap, and also in some of the blood work. I'm glad you are slowly feeling better. Keep taking those meds - I have a hunch you are on your way to a full recovery! Take care!

http://www.hfme.org/mevsms.htm Here learn MS v ME v CFS. Print out a copy and give it to your neuro's they should know your MS symptoms are ME and you should be treated properly for it.

I forgot to say, my neurologist wants me to wait a month and see how things go before he does any other test he said at that point if I'm still having symptoms go to the second MRI. This time with contrast.

Hi everyone I've also had similar things happening to me for the last two months. Started out that I woke up with pain in the center my chest one night and also had some numbness and tingling in my arms all the way down to my hands. I have just had to vaccines about five or six days earlier one was hep b and one was Tetinus.



After that my arms would start tingling slightly every day and I grew more intense. After some time they started actually to ache and hurt where by the end of the day didn't want to use the computer seeing that I sit at one all day at work.



In the beginning I would wake up in my neck and my upper back would be stiff and hurt this eventually subsided





I would find that when I woke up in the morning most days they didn't hurt very much. Upon waking I had noticed a stiffness in my fingers like they were swollen and if I bend them my knuckles would hurt. bye the end of the day they were aching and hurting a lot. Both the tingling and numbness and the aching would come and go it wasn't always there 24 /7.



I started to notice that coming up the stairs I would get like a lactic acid burn in my muscles from just one flight of stairs which was not me as I have been exercising before my shots for an hour almost every day.



I started having trouble falling asleep because of the pain in my arms and I've had days where I was so tired that driving into work I would start fall asleep at the wheel.



Then all of a sudden the numbness and tingling started coming into my feet up to my knees and matter of fact it lasted a whole entire day and I had stiffness in my legs as well.



Sometimes I would have pain in my throat pressure in my ears numbness and tingling my tongue would be numb my face would be numb and my ears and also got a really bad migraine have never had one of my life and I was accompanied by my face my throat everything hurting and throbbing.



So far I've had in a cervical spine MRI brain MRI a nerve conduction test and much bloodwork everything is good.



I want to mention that I had been doing a lot of yardwork l going into the woods did not check myself ticks and I live in Connecticut where there is a very high-risk of lyme. A few weeks after my symptoms started I was still working outside and then I started checking for ticks and I found three. Upon mentioning this to my doctor and having issues with my throat and pressure in my ears was prescribed some amoxicillin I did take it for 10 days and then go back and tell her that my symptoms seem to be getting a little better and although my Lyme test was negative thought it might have been too soon and would like to continue the course as precautionary for lime. She agreed saying that if I was starting to feel little better she would prescribe the remaining course.



I just finished my last pill last night and sense I started taking the antibiotics I've still had good and bad days but I must say in the last week and a half I've had a lot more good days than bad. I think I'm getting some of my strength back because it seems like going up one flight of stairs now doesn't tire out my muscles like it did before seems I can do one set of stairs and the pains I have my arms now are very minor the numbness in my arms and my feet are also much less. I'm not convinced that I'm better I'm not better but I am hopeful that I will see this continue to improve. I would really like to stay in touch with you guys and try to find out what's wrong with all of us.



I have found so many old postings on the Internet. They don't help much because they never have an end to them they just stop coming on and telling people what happened. I really didn't believe that I have lyme I never saw a tick until a few weeks after I had symptoms already I pulled them off day were only on me for short time so I'm still not really sure what's going on I'm not sure the amoxicillin help or if this is the course that would have happened anyway or if once I'm off to them this will start to get worse again.





Do any of you live in a high Lyme disease area? Do any of you experience that your symptoms wax and wane in intensity and duration or sometimes they'll be for just a few seconds or a few minutes and sometimes it'll be for hours sometimes it'll be all day it'll switch from limb To limb, both arms both legs all four or one of each or just one. For those of you that Have had it for more than just a few months like me has it seemed to start to go away and then come back?





I'm really looking forward to hearing back from you guys please post here as soon as possible just to update your situation or let me know if you have similar type of things happening with you.



I recently joined a group called "This is MS my username there is Jewels70" you guys should join the group as well. I would say there's a Ton of people there who have been offering advice as far as nutritional goes and they've been dealing with this kind of stuff for a long time.

klg35,

I'm sorry to hear about your challenging journey with your debilitating symptoms. I completely empathize with your frustration. No, you are not crazy. I am learning more and more how difficult it can be to diagnose MS. I would encourage you to get the spinal tap (and at the same time have them do an MS blood panel) as I have a friend with a similar story to yours, and the dx didn't come until he had the spinal tap done. Hang in there - I know I am trying to do the same. It's so frustrating to have these symptoms and no dx that you can begin treating. Keep me posted on your progress.

Jeanne (zamboni3)

I have been going to doctors off and on for two years a nurowho told me on first visit I was making it all up.and a rhumotologist who is good to me

for a while I was activie and running 2 miles a day went to no energy and sleeping all the time extreme fatigue and hurting all over thought it was anemia came back negative was tested for lupas negative RA same thing fibronyalgia was dx and new symptoms have accumulated numbness and tingling in calf feet and hands face sometimes dark spot in LT eye pain muscle weakness and spasms mental fogginess stuttering and slurred speach urinary symptoms too severe bowel changes my doctor suspects Ms can't seem to get a Dx went to a nuerologist he said it was all in my head I have had a sleep study done all clear also have tingling in neck down spine and tremors that lasted 3 months and then cleared MRI was clear and there are talks of a spinal tap i am frustrated and i know what you are going thru you all give me hope that eventually i will get some answers Imstarting to wonder if I'm. Crazy I just want to know what is going on

Hi Kelly.

Thanks for your response. It is good to know that I am not alone in my symptoms. I just can't imagine all of these symptoms being anything other than MS, just because they seem 'textbook'. I am going to continue my pursuits with a second opinion, and hoping to make some progress with the MS clinic at UCLA. FYI, I did have an optha-neurologist examine my optic nerve and everything there looked 'clean' as well. No optic neuritis. She diagnosed my 'eye tinting' episodes as optic migraine - which makes absolutely no sense to me. I just don't think she had any other explanation for it and had to give it a diagnosis for billing purposes. Keep me posted on your eye exam as well as your next MRI. I will do the same. Oh, I did read online yesterday that an MTI can sometimes identify MS before an MRI can - have you heard about this? I'm going to look into it.

Thanks again. Take good care.

Jeanne

Yes.....I have the exact same thing as you. Ten years later....MRI still clear however we believe it is MS. My eyes are being checked again in the next wee, which might help get a dx. It is not uncommon for MRI to show nothing, for a number of reasons. So, I get mris every year or two, and now four years later, with some eye symptoms acting up, I am going to get it checked out.

Kelly