Hi everyone, I have been having alot of very strange symptoms of the years beginning with double vision that comes and goes I spoke with my optician about this at the time and he assured me it was due to medication fast forward to my last eye exam and it was suggested my eye muscles in both eyes have deteriorated causing this double vision. Another issue I’ve had for several years is a tremor in the hands that comes and goes but I put this down to opiate medications for a disease called ic however its worse somedays than others and is exasperated after housework and chores. I also experience numbness and tingling on several diffwr9areas on my body initially beginning in the hands but this too comes and goes. I have recently started experiencing very sore muscles and joints in the legs arms and back and feeling very tired out of nowhere. I have had toilet issues for as long as I can remember I also have a urostomy bad because of this and a full removal of bladder and urethra but this was down to extreme inflammation of the organ and narrowing of tube.my concentration has never been great but its getting alot worse now. The one thing that is constant however is the low grade inflammation picked up in blood tests which prompted my Dr to suggest Ms this has not changed in over a year. Am I right in being worried could he be over reacting? He has suggested I stop driving along with the optician also suggesting this? I was sent urgently to a neurologist who belittled me and made this out to be all in the head and said functional neurological disorder was most likely my issue but would order an mri a referral to physio, opthalmology and also my old physiatrist who has seen me for a number of years to treat ongoing depression however has discharged me as he feels I am mentally well and does not feel his input is required any longer the neurologist suggested we carry all of this out to prove a point I don’t see the need though. Did anyone else encounter any of this in the beginning? My primary care Dr has exclaimed the neurologist sounds useless and has spoke about returning me to another one. Can anyone give me there suggestions does this sound similar or am I on a different page?
Functional neurological disorder is a very real disease, he’s not saying it’s in your head. It’s also very similar to MS in its symptoms but a much more manageable disease. If you’re concerned it’s the incorrect diagnosis I would ask for a second opinion from somebody else - or if you can go privately and find someone who specialises in MS so you can feel a little more reassured if it is ruled out - a lot of the private GPs have reviews too so you can pick somebody decent. I hope you get some answers soon.
I’m not saying it isn’t a real disease what I’m saying is a neurologist has diagnosed this with no tests and assumes I am suffering migraine when I rarely get a normol common head ache what I’m querying is my general Dr disputes the claims made by the neurologist as he feels it is ms what i would like to know is does anyone have similar issues or faced similar problems that I have explained above it is the Dr pushing for a second opinion and a psychiatric Dr whom Ive saw for years for depression has stated he feels I am mentally sound and can’t see any underlying problems having known and treated me for several years going as far to discharge me completely from his care. I feel pretty low that nobody seems to be listening to my issues and don’t seem to be doing anything to help the neurologist also stated that I wouldn’t need glasses even though I have had sight issues since 5 years old and there was no reason to remove my bladder despite 15 failed operations and on removal finding it was extremely inflamed and of 40ml in size.
they can only diagnose you with FND when all tests have come back negative, but hey so far you havent had any tests. so how can he say FND.
It could be FND. Your symptoms dont actually scream out MS.
You need to read this it explains about how MS is diagnosed.
https://www.mstrust.org.uk/a-z/mcdonald-criteria
You have already been through a lot with your health. It took me from 2000, to 2016 to get a diagnosis.
my journey. https://livingdailywithmultiplesclerosis.com/2018/03/04/the-beginning/
One of my second opinions thought i had FND without even checking my notes lol. 2 weeks later i had a letter from him saying I am sorry I cant give you a diagnosis of FND as you have too many positive results and i hope you get your answers soon, or words to that affect lol.
I would have been happy with FND as it can be sorted out.
anyway you know how you feel. I would go back to your GP and make a strategy as to where next. obviously something going on but the GP is focusing too much on MS without obviously understanding the requirements for its diagnosis.
good luck. but if it is MS i always tell people it will show itself one day, and mine did. xxxx
Thank you so much for taking the time to message me. I really hope it is something that can be fixed. So far my bloods show low grade inflammation and foliate deficiency. My issues have been coming and going over the past couple of years but recently the fatuque is the most bothersome. The optician did state that the muscle weakness in both eyes can be attributed by ms but I’m not dwelling on it. I did wonder how a neurologist could dx fnd without checking anything out first however he has issued tests to prove to me nothing is wrong which I feel is excessive if he genuinely believes there is no issues fnd should be dx appropriately I feel like he is stating these issues are in my head when I asked what could be the cause of the inflammation he proceeded yet o tell me that he didn’t know anything about blood tests and did not know how to read them however ordered a good few he then belittled me and made out I had made this up and asked who had told me this and would put it in his letter to my gp as nobody should of told me that as he feels fnd is a mind matter and I was some type of hypochondriac however who would think to make up something like that without being told in the first place and also being put on neproxen 1000mg by a gp without an issue being flagged up in the first place I feel this man couldn’t actually be bothered to carry out any testing and feels a psychiatrist would be more beneficial to me to work through my issues even though I explained I didn’t feel I had any and the psych I had seen for the past 7 years who had treated me for postnatal depression felt I had recovered and did not need intervention any longer and also suggested I come off my antidepressants hmm nothing is really making sense and I feel I wasn’t listened to.
I’ve just read your story and I can actually identity with most of it especially the infections and the heat of the bath it does suck you in, I too stumble about like. Drunk person I have so many bruises all over me I’ve even been asked many times if I had been drinking. I’ve also fallen asleep once at my desk at work I was a property manager. I’ve never lost my sight but I have struggled with blurred double vision on and off and have been colour blind as long as I can remember. The pins and needles was probably one of the first things I ever noticed I always put it down to sleep g incorrectly it comes and goes. The tiredness In my legs is there often now and walking really tired me out I’m also bothered with wide spread pain and the occasional back ache just at the weekend I ended up in bed with a hot water bottle to try and ease it. I don’t know if I should mention put my pelvic floor got extremely tense yesterday after some time with my partner my symptoms seem very weird and confusing but are not constant but everyday does seem a new challenge. My eyes are very tired lately so I have been relying heavily on my glasses and remembeing things has been a chore for a long time
Have you looked into fibromyalgia? It shares a lot of symptoms with MS and you seem to have a lot of them - widespread pain is especially an indicator of Fibro
Thank you I will have a look into that would this cause inflammation also?
You dont have inflammation i the bloods with MS. Can you find out what inflammation as this is usually down to a rehumy not neuro. You need to find out where or why you have inflammatory blood cells.
https://patient.info/treatment-medication/blood-tests/blood-tests-to-detect-inflammation
Thanks hunni it’s low grade inflammation that has been found it may be because of interstitial cystitis however I’ve no bladder now due to end stage bladder.
there’s no inflammation with fibromyalgia either - but, a large number of people with fibromyalgia get interstitial cystitis - so if the inflammation is because of this it could very well be Fibro as they’re linked
I like tests. They’re not perfect, but they are objective and they don’t come with opinions of their own: they show what they show. Hope that the tests that the neuro has ordered shed some more light for you.
Alison
I’ve been doing some reading into ms and from what I have read it is an autoimmune conditions causing inflammation causing the myelin sheath to break down causing symptoms relating to ms diagnosis I don’t feel fibro myalgia is a fit for the issues explained however can’t be ruled out however fibro myalgia doesn’t usually manifest with inflammation throughout the body usually it’s down to underlying stressor and nothing is picked up with tests therefore usually warranting a diagnosis of fibro however this is not saying symptoms felt aren’t relevant it is a very real illness which causes in some cases severe disability.