Yes you're right, I know and I think the whole thing will be a relief in some respects. I have a wonderful proactive new GP and think that this will only drag out as long as the NHS lets it. Then its a move to more positive strategies to manage symptoms and one good thing that's come out of this I am able to spend more time with my family. I used to spend over 65 hours a week teaching combined with running a youth club and various other commitments before I had all these symptoms and at times when I was in remission. Now I feel life has slowed down quite a lot and I am obviously unable to teach. After 27 years it has been a life changing time but not all bad.
I hear you about "you heading not necessarily where you wanted to go.". But I think it is better to get a firm yes or no. Hanging in limbo with "what if" stinks big time!
Good luck to you,
Thank you for your support and advice. Have got myself a new GP, she has changed all my meds & sent me straight away for bloods and booked me in for an urgent MRI. I am beginning to feel like I am getting somewhere even if it is a direction I would prefer not to go in but hey ho, chim up and all that :o)
In spite of multiple lesions, including Dawson's fingers- I was initially diagnosed with a conversion disorder. You just can't give up. It took me another year (and another major exacerbation), and another doctor (most important of all!!). The one that diagnosed me was flabbergasted that the original neurologist didn't diagnose me!
Hang in there. Don't give up!
If you put you cursor any where in a response you should see the "Select as best response" box appear in the lower left hand corner of the response.
how do I give someone a best comment?
thank you for all your supportive comments and it is sort of good to know I'm not alone in this diagnosis jungle
OMG that is exactly how it feels a very apt description .. well now I know it has a name rather than 'weird electrifying buzzing craziness that shoots down my spine'. Thanks for that :o)
Reading your story rang a familiar chord in me... I'm in Italy under the national health system here and had similar troubles getting a diagnosis. I saw a handful of neuros through the system and one privately, none of whom felt I "looked like" I had MS in spite of me having L'hermittes, double vision, what was later diagnosed as optic neuritis, numbness in my left hand, leg weakness, the hug, etc. They said I had conversion disorder and sent me off to the psychiatrist. Fortunately, at the end of his appointment with me, he assured me that I most certainly did not have CD and told me to get a new set of neuros (which turned out to be more of the same, some less fortunately). After my first bout of trigeminal neuralgia, I got assigned yet another neuro who said I was classic MS but wouldn't commit to a diagnosis.
Anyway, long story short, I went to an MS specialist in the States and was told right away that I have MS. I think that one of the drawbacks in getting an MS diagnosis is that it's so often misunderstood and worse still, in our countries, doctor's hate to diagnose it for the sheer cost of treating it. I hate to say it, but it definitely seems to be the case here in Italy, at least.
I second what JJ says about also looking into NMO. Spinal lesions and optic neuritis are often NMO (an MS look-alike). They can test for it with a simple blood test. Since your GP is as skeptical as you are of the situation, he may be willing to script the blood test for you.
Best of luck to you!
Oh yeah, I forgot. L'hermitte's sign is the electrical charge sensation some people feel when the bend their chin towards their chest. It usually starts in the upper spine and can radiate all the way dow to your toes.
Thanks for inquiring about the state of my state. I'm doin' just fine. Most of my days are good ones :-)
SPMS is secondary progressive multiple sclerosis. For many it is the next phase of MS following relapsing remitting MS (RRMS). It is characterized by fewer if any relapses, but a slow steady progression of symptoms. About 75% of folks diagnosed with RRMS will transition to SPSM.
Oh, you have NHS? I'm just a Yank/Anglophile reading your story...I suppose that you are sort of locked in to the doctors that you can see...are you able to get reassigned to other doctors, or do you have the means to get a private doctors for a thorough review of your case?
I have a friend in the UK that was so misdiagnosed/mistreated by her NHS doctor with a rare form of non-Hodgkin lymphoma, she was close to death. Her hubby made sure to get her onto private, and is alive because she made that move.
Thanks for your helpful response to my rants. Just thought I am so wrapped up in myself that I didn't bother asking you how you are doing today. How are you doing? Hope you are having a good day rather than a bad one.
Next time I visit the Neuro the words horses **** will jump to the forefront of my mind. I remember a lot of things now by visualisation or word association so that is stuck in my head for good now. :o)
Well that has cheered me up no end today ... positively tittering here. Thank you JJ for being so patient with a grouchy, pissed off, frustrated person. What is Lhermittes sign? didn't even know I had that! If you know that from what I told you then perhaps you should be a Neurologist you seem to be a lot quicker off the mark than the two I have seen.
My Aunt passed away a long time ago and I was told by my mum that's what she had. I know very little about MS and its progression. Only what I have read since it was muted by one Neuro that that was a probable cause of my symptoms. She did have relapses that ended up with her have one very severe relapse that she never recovered from and she deteriorated very rapidly in the end over a course of 8 months and died from pneumonia and septicaemia. I don't even know what SPMS is. Me being me will have to go and look it up now :o) Thanks for your help and guidance.
I'm really sorry you got the wrong idea and thought i was telling you it was all in your head, truly that was not what I was saying at all!
There have been many dx and undx community members (including me), whilst going through the dx process to find out what ever is causing their sx's, who have also had their mental health fully assessed, along with every other medical test that's needed. I will 'always' highly recommend to anyone who's suspected of or dx with a mental health condition, to get that theory/idea fully investigated, just like you would for any other medical condition put on the list of 'possible' explanations. Until any theory/idea is properly investigated its just an untested opinion, it maybe correct or totally and completely wrong!
My personal opinion is...... 'any' dr with the theory/idea that a person with spinal cord lesions, optic neuritis, Lhermitte sign, bowel and bladder dysfunction etc and therefore that must equal "conversion disorder" is a horses @$$
I seriously think you need a second or third opinion!
Conversion disorder, in my personal opinion, is the last refuge of a lazy doctor. They can't figure out what's wrong so they say it's you mind playing tricks.
When I read the last paragraph of JJ's post my take away is that you should go through all of the psychiatric/psychoanalytic processes so that you can take conversion disorder off the table. I agree. If you are meeting resistance it is your task to remove it. Another option would be to seek a second opinion.
The other thing I saw in your response to JJ was that a great aunt had RRMS progress to PPMS. These are two distinct types of MS. RRMS never progresses to PPMS. RRMS can progress to SPMS, and does in nearly 75% of people diagnosed with MS. I'm one of them :-)
Just read through your reply again and realised where you were pointing me to. I have read part 1 and 2 of that link and have already been down that path. I am not having help for any psychological illness as they cannot find any evidence of this. I am on Gabapentin for the back and bowel spasms and 8 x co-codamol for the pain. Apart from that I have medication for Hashimoto's disease, underactive thyroid, hypertension, GERD, osteoporosis and osteoarthritis and Potassium deficiency.
I was doing really well with your answer until we got to the last paragragh and then went straight into defence mode. To be fair you don't know my history and that is why I get so up tight about it. Apart from a short bout of reactive depression 12 years ago when my ex husband walked out the door whilst I was in hospital with a severe UTI I do not and have not had any history of mental or psychological illness. I have a great Aunt that had RRMS that progressed to PPMS. I have 3 definite lesions on my spine but non on my brain. I have recurrent Optic neuritis. I currently have pins and needles which worsen after sitting and sleeping, my back is in spasm constantly and have this crazy itching I have recently been in hospital with what my work colleagues thought was a heart attack to be told it was probably what is known as an MS hug. I often have a feeling like an electric shock is passing through me when I lean over my computer etc. I have little or no control over my bladder and bowels. I am unable to walk without support and so the list goes on. Every relapse follows surgery, a virus, cold or bacterial infection. I have removed myself from all stressors in my life and have a very supportive family and wonderful new husband. Now tell me its all in my head ! I have already been told by one Neuro that it is RR MS only to be told by another that because there were no white spots apparent on my brain he didn't want to commit. My GP is as sceptical as me and funding seems to be a big issue here in the UK.
Hi and welcome,
There would be a quite lot of community members over the years, who've been told by their family dr or neurologist, that they had anxiety and or depression and a high percentage of them eventually dx with MS or 'another mimicking condition' but in all the years i've been here, there would be less than a hand full, who've specifically been dx with conversion disorder, 1 who was eventually dx with MS and another dx with chari.
We do hear from people, that seem to be dealing with the more common psychological condition of Health Anxiety, and they are often but not always aware that their prior dx of anxiety, is more focused on their health and part of the process is a behaviour pattern, that compels them to seek out a lot of reassurance, that they don't have the condition their anxiety has become focused on.
Occasionally we hear from a family member of someone dx with MS, more often because they are now more aware of MS, they wonder if what they experience could be MS or if they too should be assessed for MS because they've heard that autoimmune conditions are usually hereditary. Though statistically, it's actually very unusual for MS to be dx, in more than one family member. It's some thing like, grater than 95% that they won't have MS, even with a first person family member.
Though if they did eventually get dx with a physiological or psychological condition, I couldn't really say, apart from autoimmune conditions in general are not uncommon in the families of someone dx with MS, so there is a possibility that they did have one of the mimics and just didn't pass on to us, what it eventually turned out to be.
17 years is a long time even for MS, i'd expect there to be some clinical and test evidence to be showing up to put MS high on your list of possibilities, especially if you did have MS and it had been untreated through out those years, there would be a higher expectation of the evidence being there.
Honestly, if you have been told your sx's are caused by a psychological condition or diagnosed with something like conversion disorder, then it is in your absolute best interest, to get your mental health fully and appropriately assessed by a psychologist or psychiatrist, so you can start treatment or get that dx totally off your list! We have a couple of health pages specifically on this topic that you might find helpful to read through, below is part 1.....