I hope you don’t mind me asking...diagno... - My MSAA Community

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I hope you don’t mind me asking...diagnosis, symptoms, and lesions

Dear all, I hope you don’t mind me asking you all this. I’ve not been diagnosed with ms, but fnd. My problem is I’ve not had many tests, so part of me is doubtful of the diagnosis, which is unhelpful. I had an mri of cervical and lumbosacral regions to check for nerve root impingement. (I was having right side, mainly face and leg, altered sensation, numbness-type feelings and back and knee/leg pain.) These were clear (apart from multilevel degenerative disc disease). In a neuropsychiatric appointment last week I was told the symptoms I had would have shown up an the mri of spine, so no brain imaging needed therefore fnd. I also had one sided headache, tinnitus (have had for some time), mild balance issues, sore leg which felt like I couldn’t relax it, random muscle twitches. More recently a lot of that much better/gone, but sometimes zings in hands (not both together) tingling in both soles of feet, some of my right side feels different. Since the first onset of symptoms I’ve still got a patch of numb-feeling on back of my head. Neurologist said I wouldn’t have all this with ms or anything else. And as I have a history of depression it was fnd. What I was wondering was whether in all your experiences this is true (type of symptoms and clear spine)? So many people take so long to get dx’d, drs seem to know so little sometimes, and the diagnosis of fnd seems so nebulous, many people diagnosed with it advice to keep searching for a more concrete answer. I’m just a bit tired and fed up of thinking about this, but I have children and owe it to them to make sure I’ve covered all bases, if that makes sense. My question was kind of hidden in the middle of my ramble, sorry!: Would damage in spine have shown up if it was cause of my symptoms? Are specific lesions related to specific symptoms? Sorry for ramble. Sorry for asking. Hope you’re all ok today. Thanks.

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I'm sorry about your symptoms and for no clear answer. I'm certainly not a doctor, nor can I know your medical history. But I would wonder why there was no brain MRI, no spinal fluid analysis, etc. Was an EMG done? If it's possible to get another opinion, it might be worth looking into. MS has such a wide variety and intensity of symptoms, and it can be difficult to diagnose at times.

I hope you don't have MS, but I do hope that you feel more secure about your diagnosis. We are here for you as you go through this.

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Thank you and yes of course me too. I figure if I did I really wouldn’t feel well. But then some of the time I really don’t!! I know this is not a drs office and my apologies for asking. I just felt so patronised by the neuropsychiatrist. He said my ‘history’ told them. Though I too felt the neurologist would’ve ‘seen’ something wrong just by looking at me, being an expert and all that. (Then I think of everything I’ve read here and on other forums!) Because I’ve been depressed previously it can’t be organic? Or he can just tell? He said it was because what I experienced was on one side (mainly). The answer is no, no tests beyond the mri I mentioned and various bloods, all good apparently. Thank you for taking the time to reply.

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No apology needed for asking. Many of us have felt just as you have!

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March 2007 I was informed I had MS my biggest thing is when I jog I could not keep my balance I jog like a drunk person, I also had tingling in my feet and hands I had every test you can think of it took about two years before I was informed I had MS I went to a neurologist that Specializes with this disease I went to UT physician Clinic in Houston Texas. The sooner you start your treatment be better it will be for you if you want a second opinion then do that so you can start your medicine I had a spinal tap and that how it was confirmed about the MS have lesion on my brain and spinal cord. My last flare up was November 2012

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What’s an emg btw?

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Thank you x

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I’ve read that lesions have to be 4mm in size to show up on MRIs. so micro damage wouldn’t always show up.

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G'day, I am NOT under any circumstances a medical professional of any sort, so of course feel free to ignore me. Try a different neurologist. Find out the characteristics of ms diagnoses. Do you meet hem? then go from there, tell the neurologist that you are looking for a second d opinion, ask if he has any other idea, but tell hm that you maybe inclined towards ms and go from there. Remember though, I am NOT a doctor nor do I play one on TV. Good luck.

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artmom I'm so sorry for your difficulty in getting a clear diagnosis, and for the report that once again someone in search of answers has felt condescension from a medical practioner. The lack of an ability to listen without judgment or condescension is widespread among doctors. It is reflective of cultural bias against women who are viewed as attention seeking, "menopausal" or (to use an older pejorative term) hysterical. You have my empathy; it took nearly 20 years before I had an answer for vague symptoms such as you describe. I wouldn't wish that experience on anyone. If you haven't already done so, get a referral to a MS specialist or a major teaching hospital. The criteria for diagnosing MS includes a lumbar puncture and brain MRI, not just spine. Although I have a few old lesions in my thoracic and cervical spine, the largest areas of demyelination are in my brain. I'm not a doctor, but it is my understanding that a brain MRI is essential to diagnosis.

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Thank you for replying. I’m going to have to get over how I’ll feel when everything is clear and they say ‘see, we told you, hypochondriac/hysterical woman’... I guess it’s so internalised with me (this attitude) unfortunately.

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I dealt with, what I thought was a pinched nerve - back/shoulder pain for 3 years. Then the exhaustion and brain/cog fog kicked in. Finally got into a neuro and she watched me walk upto her office - pointed at me and said "MS." Had a brain and spinal MRI next day and I had 12-17 lesions on my brain and not one on my spine. Was flabbergasted. The inflammation of my Facia is what I thought was a pinched nerve. I immediately started Ocrevus, and am 70% better 1 year later. Hang in there!

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I’m sorry. I guess I do kinda think it’d be obvious from the outside - my gait/something else, as your neurologist saw immediately.

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My spine has NO lesions. They found mine in my brain by MRI. Then they did the lumbar puncture and they confirmed it with that. So your spine can be without lesions and still have MS. Good luck.

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Thanks. He did say ‘with my symptoms’. (I listed them at the top.)

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Mine started with a leg twitch and a limp. Nothing on MRI, told I had fibromyalgia for 8+ years. Now I show 2 lesions on spine and 1in brain. I went from walking with limp to walking on a walker being told I had fibromyalgia. I had to doctor shop around 7-9 doctors before I got an answer. You can have clear MRI and have the start of MS, or maybe just incompetent MRI people. It’s obvious now that I had MS for years. Hope you get an answer.

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My MS started with a knee going totally cold even though I was in 108 degree weather. The cold became like when you foot goes to sleep. Over the next several hours the numbness travelled up my leg across my torso and down the other leg to the other knee. In addition my back was very painful. First thought was pinched nerve or disc problem. To the chiropractic I went. No real relief. But the pain went away. Went to neurologist and he did an MRI on lumbar and thoracic spine. No lesions found. One year later I was real fatigued after walking about three miles and couldn’t go on. New neurologist did MRI on sipine and head and found lesions and diagnosed MS now two years after first episode. I then switched to an MS specialist. My MRI shows 20+ lesions, but no new ones over the last two years. I have PPMS and an on Ocrevus.

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You have started on a journey like so many of us, I started by feeling unbalanced and ms hugs, spasms in my rib cage.Get a second opinion by ms specialist.I have most on my brain,but I did have very few in my spine...

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Thank you all. Would you say that the lesions’ locations relate to a certain part of the body - where symptoms occur?

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I would feel more comfortable dismissing MS or a brain tumor (this is what we thought I had) if there were a second opinion or MRI with contrast of the brain.

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Hi. I know this is a bit late. I have also been diagnosed with FND. The Neuro only scanned my spine in hospital because I had a brain MRI a year ago. I was admitted because I suddenly couldn't walk because my legs were bouncing and jerking all over the place. The Neuro was quite derogatory in my opinion, and I think the diagnosis was largely based on me having PTSD. She said I would recover in a couple of weeks. Which I sort of did, except the more I did the worse I got again. I am gradually getting worse again. This time I am losing dexterity in my hands. I am also using crutches when I leave the house. I was previously diagnosed with fibro due to flu like feeling and exhaustion, and prior to that I had migraine symptoms for a couple of years that were so extreme.

It seems the neurologist only listened to the parts that she wanted to because she read ptsd. It happens all the time to me. She ignored the shooting pains, tingling numbness etc that came and went constantly in my feet. It felt like a nerve storm all the time. AND she didn't believe in fibromyalgia. So who was I dealing with anyway?????

I am now experiencing things getting worse again, and like you, I fear going to a doctor. I am sort of thinking, I will just go when something indisputable happens, then I can just let them sort it out.

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Hi Jazymay. We’ve met on the fndhope HealthUnlocked pages. Thanks for your thoughts.

I’m thinking exactly the same thing at the moment. I’m not getting better. I’m up and down. After consulting here I thought what kdali said made sense (easier to dismiss something with greater evidence). Also what the neurologist had said to me was contradictory to that said by Prof. Edwards and others on webinars during fnd awareness week - that I had too many symptoms to be MS or anything else.

I’ve asked my husband to come with me to the GP, and said he needs to support me (he was of the opinion that the neuro has said it was this so what’s the problem). But I’m putting it off. I’m so up and down. At the moment I wake up with pain on one side of the back of my head, and have had for a week or so dull pain on the same side where my ear is, behind my eye, all that area (if that makes sense). Several years ago I had that/similar. I had an eye test and mentioned it and was told it was a headache. Guess that makes sense as it’s in my head!! The pain on back of my head is weird though. Like I’ve been pressing down really hard or something. I get a lot of nausea, have for years, and am now wondering if this is all/partly migraines?

Sorry I got sidetracked. I intend to go to the doc and ask for more...something. But am also thinking something more defined would help to get what I’m asking for. Sorry to ramble. I try not to bother my husband with all this and I’ve not told anyone else.

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I totally understand. I don't have anyone to tell except on forums. I don't have many friends and they have quite a lot to deal with themselves. My kids are young adults just starting out in life and my therapist is convinced I have conversion disorder. So who can I confide in without sounding paranoid, hypochondriac or psychosomatic?

I have a therapy apt on Monday and I am trying to work up the courage to explain the latest research and my fears. As is sods law, i am feeling much better today! After 6 weeks of going down hill. But I guess it's relative. It won't take much to bring on symptoms again. I just don't know what to do. But then I think perhaps I just let things take their course. If it's MS something will happen and I diagnosis will be made. If it's fnd I will have to learn how to work with it. Either way I have to learn to live with the symptoms I have and decide if I need assistance from the govt etc. Cleaning, NDIS, all of that.

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Oh yeah, and keep playing the odd lotto card, you never know!

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