I was diagnosed with MS in 2005. Now im being told I DO NOT have MS . My neurologist I had for 6 years left the practice, I was turned over to another neurologist within the same office and he says I don't have it. I was shocked, got a second opinion and he's saying the same thing! He says my MS lesions dont look lije MS lesions and I dont have enough neurological findings. This has been a nightmare. I have so many MS symptoms, . Ive seen 3 other specialty doctors, a vascular doctor, a spine doctor and a neurosurgeon that checked me for Chiari Malformation and all 3 cant find anything wrong in that area. Has anyone else had this happen to them ??? Im in USA and im hearing and reading things thst say that people are being misdiagnosed with MS, but then they cant tell me what I do hsve. My main symptoms are chronic fatigue, PAIN in my legs, feet and ankles, very sensitive to heat, much cognitive changes. and spasticity. I have 11 lesions and a clear spinal tsp. Any thoughts?
If you don't have MS you should be happy, I think.
But in any case, your symptoms are typical of MS desease, and , except for the pain , they are similar to mine. I was diagnosed in 2005 too.
Nowadays the basilar and exhaustive tests for MS are, besides your clinical story, an MRI scan to brain AND spinal cord for research of MS lesions or scars, and a lumbar puncture as well to determine whether you have oligoclonal bands in your cerebrospinal fluid. That is an important indicator in the diagnosis of MS. The bands tend to disappear from the cerebrospinal fluid as a person recovers from the neurological disease.
Have you ever had those tests?
If this is indeed true , i dont have ms, then that is GREAT! . Yes, I have had all those tests. I have only brain lesions . I have asked why does my right eye hurt from time to time. Some say its optic neuritis, some say it isnt. . My spinal cord of neck and thoracic shows no lesions. And my cerebrospinal fluid does not have O bands, only elevated protein. Mu latest neurologist says the cerebral spine fluid doesnt have to hsve the O bands for diagnosis. I hsve friends with a clear cerebral fluid who hsve MS and friends with much pain. Pain is recognized as a MS symptom in the USA.. I've had that weird eye test. I do have brisk reflexes. And yes, all the diagnostic tests for MS are exhausting. Just seems crazy these doctors csnt tell me whsts wrong with me. Ive been tested for EVERYTHING, blood work. It seems there's either too much or not enough information about MS and doctors don't know bwhat to do. Thanks fot your input
I'm so sorry of your situation. This is a very strange case indeed.
I'm wondering what Neurologists want in order to definitely release a clear diagnosis. I can understand your frustration, added to all your adverse symptoms, this is very bad .
But I know one thing. You have to attempt to stop grieve for the incompetence of many physicians around you. This painful emotional state could compromise your health even more.
Since you are rightly disappointed by your neurologist, have you tried to further searching a GOOD specialist , maybe outside of the allopathic medicine, like a naturopath or a health practicer?
I know a few in your country, some of them have had MS and now are symptoms-free. Maybe they can help you to relieve your sufferings. They treat a lot of pathologies, and they tend to cure the entire person and not the desease, so you have not to be worried about the exact name of your illness, such as Sclerosis or other....The important thing is to earn again a good health , isn't it?
I wish you all the best.
F.
hi, i'm in the uk, have ms (diagnosed 2004) and my very worst symptom is pain (definately recognised as a symptom here, by all but the most misinformed of doctors).
i'd be cautious about simply taking these 'no, not ms' statements you're now getting from some doctors. while i'm sure that NOT having ms would be a wonderful thing, it's a notoriously tricky condition to pin down, given that some recovery can happen and produce some false positive test results.
various news about people 'not' having ms after having been diagnosed for years, might be making some medics over there a little nervous about possibly being sued, they might believe that, 'i don't know what it is' is less likely to produce a litigious patient, than what they could consider 'over diagnosing'. this will leave an awful lot of people in limbo... besides, they can test their hearts out now, can't they? earn themselves more money! i hope you have good medical insurance, it must be terrible for anyone over there who doesn't. as heavily flawed as our NHS is, here, i'm really glad that this is where i am. all medical care is 'free at the point of delivery'.
good luck, and take care. x
surely, if people with ms were symptom free after having some kind of naturopathic cure-all. it would be HUGE news, worldwide?! and not knowing what condition is blighting your life is torturous and makes it pretty much impossible to have 'good health'.
sorry, but ask anyone with a long term or incureable condition how they feel about anyone blithely saying 'oh, that, there's a simple cure...' and the usual answer is INFURIATED!
You are exactly right. The doctors are scared of lawsuits. There is a very informative article where a university did a study in 2012 and discovered that there are neurologists that feel a patient may not have MS but won't say anything due to the psychological effects how it would harm the patients. The study also found out how much the insurance companies and medicare was paying out for ms treatments when the person didnt even have ms. Also the criteria for diagnosing ms was changed in 2012. It is a very hard thing to diagnose. And sime doctors still think osin is not a symptom of ms but like you I have horrible chronic pain in my legs , feet and ankles. Im not 100% sure that I don't have ms because of all of my symptoms, and after 6 months I still don't have a diagnosis of what is wrong with my body. GREAT if I dont have ms but whst is it that I do have?.
This is a bitter answer indeed Wendy, and I'm so sorry to have provoked such reaction. Apologise for this .
But, If official medicine fails there are other source to get better too. I would try to inform about these alternatives. For instance Iridology could give to Carolina a picture of her current state in a non-invasive way. It would be a non-official but credible diagnosis...I guess It would be a big step forward.
Personally I've received a lot of medical advice or ideas in 30 years of MS, and I always filtered them.
They (often friends) gave me their advice because they were worried about me. They showed me altruism. Most neurologists don't have the same feelings. It is worth getting information about their advice. This is a more constructive way to proceed, even if you will not follow the cure, because everyone is free to choose his way.
I'm not so blithe as you probably think, I'm on suffering right now and facing many MS symptoms, but I think to be well informed in a bunch of alternative cure and I'm trying those. They are not so simple, because they are actually 'healing protocols' and require personal engagement and constant effort.
Some people respond better than others to these cures, because we are all different , but I know many patients have improved their health and some even saved their life fighting this way some lethal deseases like cancer...there, where the official medicine had failed.
So my message to Carolina must be positive: don't give up, look for other ways, don't lose your hope, inform yourself , don't stop fight. Official medicine has not all the answers yet, but do not let it down.
F.
Thank you, im open to ANYTHING at this point. And im not and cant give up , because its so greatly affecting my life, robbing me of joy I used to have.
federico, i don't think that you understand the difference between bitternes and incredulity. it's all well and good to tell of people having miraculous results from following various types of 'naturopathic' treatments, that you actually (again, BLITHELY) say, quote:
'Some people respond better than others to these cures, because we are all different , but I know many patients have improved their health and some even SAVED THEIR LIFE fighting this way some lethal deseases like cancer...there, where the official medicine had failed.'
carolina is dealing with a big health issue, and, basically, suggesting that a person is 'free' to follow or not follow different 'unofficial' treatments leads me to the question: how much will 'free' cost her exactly?!
carolina, be wary of unofficial treatments and any one bandying the word 'cure' around. should it turn out that you do have ms, remember, there is, currently, no cure for ms. i would urge anyone going through the awful mill of having undiagnosed, ongoing health problems to find some relaxation exercises that work for them, to help reduce stress levels. just don't pay for them, find them (actually) free, online.
carolina, i sincerely hope that you do, in fact, have something curable, rather than ms,
Hi there,
I'm not sure if you are still on this discussion but I wanted to let you know the same thing happened to me. I was diagnosed in 2003 then told in 2013 that it was a misdiagnosis. I spend about 7 years on different medication that I didn't really need to take. I was wondering if you would like to talk about it in more detail.
HI Carolinagirl,
misdiagnosis is a difficult adjustment. Have you talked with an attorney. I would at least ck out the options. Not only take pmt once he case is only done or if a settlement is agreed out of court. Negotiations can be a started anytime. With all that you have been hurt from a misdiagnosis is unacceptable and negligence.
It must be so frustrating that no one can send you on to a dr to give u a diagnosis.
I had vit B complex B6, B12 defficency. I had a lot of similar issues u described. Have your vit B levels been checked vit D. These vit are closely relate to the symptoms described.,As we age we have a more difficult time for our systems to produce certain vitamins and minerals. I even had tingling in my legs and feet. Many of my my pains were like RLS and were from taking antihistamines. As well as hip implants. I take the vitamins I was deficient in as well as I stay with a exercise program the therapist designed for my needs and eat a better diet also antiinflammatory foods. Protien shakes help with energy and keep my weight down .
Take care. I hope you can get this sorted out soon.
Don't you think that the very fact that people are so ready to reach for the nearest barrister/attorney is very likely the reason that medics are sometimes terrified to make a definitive diagnosis(?!)
Definitely only take vitamins once it's cleared by a dr, it is possible to overdose on them, which can have (potentially serious) repercussions on your health.
I am reading posts on this forum because my Neurologist ( a Dr. that has only seen me 2x)...has done MRI of brain and spine and says NO MS.
My sister has MS....and she told me she has one of the best Drs in the state and that he said the only way (most telling way) to know if a person has MS is from the spinal "tap".
Hers was not clear and was a white chalky substance (probably those bands that are mentioned by another response you received)....and he diagnosed her with MS.
Hi, they're oligoclonic bands. The accepted diagnostic tools for a MS diagnosis are BOTH o bands in cerebrospinal fluid, from lumbar puncture AND visible lesions visible on MRI. One of the obvious problems with both, is that anyone with relapsing/remitting MS has periods of recovery, when both MRI's and LP results can be clear. It's one of the reasons why so many of us don't get a correct diagnosis, sometimes for years.
Ah...thats right Wendy....I did read there was criteria to met and that 2 of them had to be met....but when I was reading whatever I was reading...I for myself...thought if my spinal came back positive...I had the criteria...Now...I feel like looking it up again..LOL.
But, I have an apt with the current Neuro Monday and I will talk to her about it. Thank you...for your response.
Good luck with your appointment. Keep an ongoing record of any worrying symptoms or any questions you have. It can help with Dr's appointments. Hopefully you will have something simple/curable, but bear in mind the potential for false negative results from both MRI's and LP samples. sorry I sound really doom and gloom.
Take care
I would not accept the undiagnosis thing if you still have issues and they cannot tell you exactly what you do have!!!! Run don't walk away from the quacks of the world!
Spinal tap can be clear and still have ms! No one test individually can eliminate ms as a possibility!
By removing the diagnosis, the doctor can then milk your insurance and you for unlimited tests and procedures to attempt to diagnose you!!!
Can you still contact previous neurologists and doctors that you have seen that are familiar with your issues?? Perhaps they can suggest a better doctor to treat you or can at least contact the one that is trying to say you do not have ms. Seek out help from wherever you can,maybe the ms society?
I was just told the same thing after going to another MS specialist. He thinks I have Sjögren's syndrome and that the symptoms mimic ms. Speak to a good rheumatologist. All the best and blessings.
Hi carolinagirl1
I went undiagnosed, by my treating Neurologist, for over 6 years. My MRI showed numerous lesions in my brain, as well as many other symptoms. He told me "not to worry about all the spots, in my brain, umless I felt different."
I can't begin to tell you how many times I told him I DID feel different and was having symptoms I had never had before. All to no avail. He didn't listen!!
In Jan. 2009 a spine specialists, who was treating me for something else called me in to his office. He asked me if I had ever been diagnosed with MS? Also, if I had a Neurologist? He showed me the brain MRI'S, that he had done on me and that I DID have MS! He then sent all the medical tests, documents, to my Neurologist, as well as gave me the CD Rom, to bring to my next appt with the Neurologist.
My Neurologist still refused to discuss MS with me, let alone give me a dx.
March 2015 I ended up in the ER, with symptoms I had never experienced. After tests were done the Chief of Staff, of the hospital came in and talked with me. He explained that I HAD MS and my neurological system was trying to shut down. Also asked did I have a Neurologist? That I needed to be seen within 1-3 days, by my Neurologist!!
Thankfully, I had just changed Neurologist.
I was furious, that I was allowed to suffer and go undiagnosed, by the Neurologist that I had for several years. Also untreated!!
If possible try to find a new Neurologist, who specializes in MS.
I don't know if you have any other autoimmune disease (s)?
Most times, if you have one then you will probably end up with another.
Try seeing a Rheumatologist, if possible. I think you may possibly have better luck, with a Rheumu, as well as getting a proper diagnosis. I'm curious to know, if any type of RA's are in your family? Have you ever had a HLA B27 test done??
Good luck!
I find it's the "not knowing" that's worse, than having a definitive diagnosis.