MRI came back all clear and I have now been told all my symptoms are real but caused by me.
So I guess it was in my head all along.
Thank you all for you help and lovely comments over this time it has been a real help in getting me through it all. I hope you all continue to kick MS butt.
xx
Wait Carmen-Rider1991 Please get a second opinion. Just because your doctor believes it is not MS does not mean it is psychosomatic, it could be something else. Have they sent you for further testing?
From the conversation i had today they are not going to bother. I have one more lot of blood test depending on how they come back depends how they move forward. They have told me to continue you with the pain medication and that was it? How would i go about getting a second opinion?
I am not sure, since you are in the U.K. but do not give up until you are satisfied, as WAshingtongirl and erash said below.
Carmen-Rider1991 , I am NOT a health professional, and I am NOT saying you have MS. I pray you don't! But I agree with Morllyn . Clear MRIs and physical exams don't always mean an absence of MS, especially in the early stages.
Will your family doctor refer you to another neurologist for a 2nd opinion? And a rheumatologist too? Sometimes diseases in both areas overlap and can be very similar.
I believe you live in the U.K., so the MSAA wouldn't be able to assist in finding docs in your area. What about the National MS Society in the U.K.? Maybe they have a list of neuros there. As for your health care system and allowances for another opinion, maybe someone here from the U.K. can help. jimeka ? HeidiK ? angelite ? Anyone else? My mind has drawn a bland. Sorry for those I've left out...not intentional!
I was told it wasn't MS for 9yrs. My first neuro even offered to make a psychiatric appt for me. Let's hope it isn't MS. But if you know you have something wrong, keep fighting to find out what it is. I hope it's something curable!
And you're always welcome here. Don't feel this recent doc visit means you can't stay here. We have others still in 'limbo.' 🌻💕
Carmen-Rider1991 i agree with WAshingtongirl
of course there can be no end to testing, looking for causes, but end the search when YOU are satisfied not the health care system (granted there are limitations on resources 🙁).
Medicine is FAR from perfect.
My MRIs were negative for 10 yrs before they revealed many lesions.
In the mean time, try not to feel overwhelmed and also search for quality on your life.
Thank you for your message. I'm going to focus on natural healing for now such as yoga vitamins etc. Until the blood results come back in again and see what the GP has to say again. Seems to be a common story on here.
Thank you for this. I have to wait until I have had another blood test before they see me again. I will call the MS society to see if they have any suggestions. I will keep up the fight. 
ditto!This is serious enough to you and one doctor does not make healthcare.In the beginning for me it was, get a hobby, a different job and on and on.We all do hope you don't have anything but.....second third or how ever many docs it takes to make sure.My plaques were first said to be TIAs but not so...Find clarity for yourself....only you know what your heart and mind says and feels with your body.Many prayers...
@Carmen-Rider1951
Did they check your SPINE? When I was first diagnosed, my brain MRI was clear but my spine had multiple lesions. Please don't accept the "psychosomatic diagnosis" and please pursue getting a real explanation for your symptoms.
Best wishes,
Lisa
I had an MRI on my Lumbar, Brain and Neck all clear. I will keep pushing. Yesterday i was overwhelmed with what they had said. Now with some sleep i feel a bit stronger again.
Oh, that's good! Presumably Thoracic too?
Glad you're feeling stronger today! 😊
No not Thoracic.
@Carmen-Rider1991
Hi 👋🏼,
So they did brain, cervical, and lumbar MRIs, but no Thoracic? If that is correct, it may be another place where MS is lurking? Do you know why they skipped this?
Agree with above. My MS specialist doc told me he would NOT hahave dx'd me from my first MRI by another neuro doc. I have MS lesions on my thoracic spine but have all the MS symptoms. They vary in degree of discomfort. You may get diagnosed in the future.
I agree with everyone else. Keep looking! Have you had a lumbar puncture to check spinal fluid? It isn't always definitive, but is another good indicator. Mine was negative, yet I have multiple lesions of the brain. You're sure in our prayers that you find real answers.
greaterexp Were you in an exacerbation when you had the lumbar puncture? I have often wondered if it only comes back positive during an exacerbation.
If I remember correctly, I think the worst was over. I'm not sure when the relapse really ended, however. I've seen opposing views about the oligoclonal bands being present forever or mainly during active inflammation. erash may have good info on that.
greaterexp Iona60 Carmen-Rider1991
I read that once + oligoclonal bands (OB) are detected regardless of MS course. So I imagine you don't need to be in an exacerbation.
My LP was negative and many others here with a diagnosis of MS also had negative LPs?
Yet presence of OB is diagnostic of MS just not sure of the sensitivity of the test. Anyone know?
My MRI was definite MS and my neuro didn't recommend an LP. I went for a 2nd opinion, requested the LP, it was negative. I was worked up for other bizarre genetic conditions that were all negative too and went back to my original neuro.
Thank you, erash ! My o-bands were negative, too. My neurologist wanted the LP as an aid to diagnosing, rather than definitive proof. The MRI was quite clear with multiple lesions, and my physical exam and history all pointed to MS.
No I haven't just MRI's i saw one neurologist for less than 20 mins and that's it. Thank you for your message x
Carmen-Rider1991 where in the uk do you live? Blessings Jimeka
Hertfordshire
Hi Carmen,
Good news that scans are clear in some ways but no explanation yet for your symptoms, other than the stock scapegoat of 'All in your head' which seems to be the go to diagnosis by neuros if scans are negative, here in UK. I'm having a quiet fume on your behalf. There are many physical possibilities for your symptoms ( muscle disorders etc ) that would not necessarily show up on traditional scans and also early stage diseases ( such as MS ) that may surface on later scans, if symptoms and permanent disability continue to progress.
I was originally put down as 'functional symptoms' nearly five years ago, due to a clear brain MRI, 2 days into first neurological attack. 2 more relapses and increasing disability later, neuro is still quoting 'functional' as neck/T spine scan was clear last year.Elevated white cell counts/swollen lymph nodes, increased disability, BP drops, hypothermia, abnormal reflexes, slowed EEG waves and the clinical findings of 2 physiotherapists have all been ignored in favour of 'functional'- utterly illogical ! MRI is good but not God - too many neuros rely too heavily on evidence from them and automatically dismiss patients with negative results. In some cases, it seems it is a financial convenience to sign off patients if no obvious cause presents, rather than allowing the expense of more rigorous testing.
My advice would be to keep an open mind and keep a diary of symptoms. Sometimes we have to research, be sure of what is definitely classed as an organic rather than a possible psychological symptom and advocate for ourselves in the face of medical bias/disinterest.
Right, that's me down off my soapbox ! Please stay in touch with us here, there are others like myself still wandering around in limboland ! Angela x
Thank you. I feel sad that i am not alone with the process but at the same time comforted there are people out there who understand.
Had a long chat with my mother who too has MS and apparently they did this to her also.
She told me not to fight to hard and go along with the process as sometimes it can go against you.
Once they have ruled out any physiological issues they will revert back to different options.
I just cant believe in this day and age and 20 years after my mum went through all this, they are still doing the this to people.
They tell you stress makes everything worse whilst continuously stressing you out, beating you down and cause you to doubt your own mind and body.
Thank you for your message i appreciate the support from all of you. x
Carmen-Rider1991 I agree with everyone else about the lumbar puncture. It wouldn't hurt to have one done. Have you had an MRI of your thoracic spine-? that's where I have the most lesions. What about NMO? The symptoms are similar to MS. A simple blood test can determine if it's that. Psycho somatic - pish posh. Only you know how you're feeling. I was diagnosed with MS after 7 years of suffering b/c I wouldn't let doctors sweep my symptoms under the rug-- again. The MS diagnosis was a surprise for sure, but I'm dealing with it and slowing down the progression with a DMT.
I said this before. My spinal tap was negative and MRI inconclusive. I was diagnosed ten months later based on symptoms. Keep a symptom log!!! Keep on the doctors. And keep visiting us.
Carmen-Rider1991 , I agree with Morilyn and others who have asked you to consider getting a second opinion, and then maybe even a third or fourth. Although health care is catching up to patient self- advocacy, not too long ago in the US, women especially were told that all of their claimed illnesses were "in their heads." When I was in my adolescence and my teens, I always had a bad stomach, vomiting, diarrhea and other gastric symptoms, but with the diagnostic tools that were available then, the drs couldn't find anything and told my parents that it was all caused by "nerves" because I was a "spoiled child looking for attention", until I finally collapsed in the dining hall when I was in my first year of college and it turned out to be liver cancer from which I nearly died at age 19. I had bad headaches all my life as well, which sometimes caused left-sided paralysis, and all but one dr said that that was "nerves" too as I was very "high-strung," and that turned out to be hemiplegic migraine which finally got helped when I found the right neurologist. I am certainly not a medical dr., but I have heard "psychosomatic" way too many times in my life to be satisfied with that as an answer. I pray for you that you DON'T in fact have MS, but please, don't be too quick to accept the "It's all in your head" dx until YOU are satisfied that everything that can be done to find an answer has been done.
Carmen don't give up! I endorse all the previous comments here. I was lucky that my diagnosis was pretty straight forward but my mother was not. She has suffered from pain in her neck for 30 years. Every medico she went to had a different 'pet' diagnosis and when these tested negative the answer was always the same. "It's all in your mind." She recently had trouble with her vision and was told by her ophthalmologist that there was noting wrong with her eyes and there was nothing that could be done about her vision problem. I took her to another one whom I had been seeing as part of a drug trial I was involved in. She diagnosed macular oedema and that it was curable with a drug in 6 weeks. She the said she would like to do a scan of the retina. I said "You'll have to raise that a bit because mum wont be able to bend her neck down to it." She pushed it aside and said "There's a diagnosis! Ankylosing spondylitis. It's very commonly associated with MO." We got that checked out and she was right, on both counts and mum is the best she's been for years.
As I've said before, here and elsewhere, if you car had a problem and your mechanic couldn't find it or said you were imagining it you would take it some where else. You are much more important than your car! Good luck with it, although getting a medical diagnosis should definitely not be a matter of luck.
Have a good one.
Steve.
I was told for years fibromyalgia and when that didn't fit. I saw a nuerologist in 2007 he told me my MRIs we're fine and it was all psychosomatic. Well guess what. I had MRI in 2011 that compared my MRIs and said that my 5mm lesion at c-2 level in 2007 was now 8mm in 2011. So it really was there. I really wasn't crazy psychosomatic. Did the nuero do a spinal tap.
@tanyagoeres
Exactly. Shouldn’t “psychosomatic” be a term of the past? It is so insulting and medicine has come so far since the days of labeling women as “hysterical.” I think it is a cop out used when a clinician doesn’t want to search any further or doesn’t have the skill to identify what’s wrong. 😣
My MRI can back clear also. Lesions only showed with contrast and in spine 6 hours in MRI scanner to have full head and spine. Don't give up. Many doctors especially Neuro are text book. If it dose not follow excactly then not it. If it walks like it talks like it looks like then it is.
Keep fighting for yourself get your own results and keep then learn to interpret scans and test results.
Thank you all so much for your messages. I will keep pushing and see what happens. By the looks of things i am only at the start of very long road which many have walked along.
Once again thank you all so much and your fight and support is amazing.
xx
My first MRI was clear too.
Disaster d’jour 
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