Hi Moyna, she said she didn’t see anything on the scan I was booked in for a head & cervical MRI scan last weds, she called me on Mon to tell me they’d only scanned my head so needed to go in again. Well, late last night she called up & said from the head scan she can see enough to see there’s no inflammation so is ruling out ms. She sending me for a nerve test but said this can take several weeks for an appointment. My thoughts now are, why didn’t she see this before & what if its something further down my spine ie: thoracic… Do I request another scan or take her word for it?! I had whiplash in 2008 & back problems too from a car accident, someone drove into the back of me at speed whilst I was stationary & made me hit the car in front too! All the while he drove off!!! Mrs C x
Just re read your post Moyna, so you’ve been cleared of possible ms? What have you been diagnosed with? What were your symptoms to suggest it in the first instance? My friend had functional nerve disorder, she ended up in a wheelchair for a while but has fully recovered now, this was suggested to be brought on by a previous brain injury & stress. She suggested this to me when I first told her my symptoms & she explained they were extremely similar to hers & the symptoms mimic ms & that FND could be a possiblity but isn’t really recognised. But as the doctors were telling me its highly possible ms I think I convinced myself it was going to be the diagnosis so I was prepared. I’m so confused! Mrs C x
Hi MrsC,
Take a look at:
which will give you the rendown on the McDonald Criteria used to judge if someone has MS.
Be sure to read down to the 2010 modifications.
You have been there - only you can decide if there is good reason for you to want a second opinion. If you think you should have a second opinion, it is your right to have one.
Even one person in limbo is one too many.
Geoff
Hi MrsC
I have sent you a personal message as my story is too long!
Regards
Moyna x
Hi Mrs C,
what you are going through is exactley the same as me. I have symptoms close to yours, it was thought I had been having small strokes because i had an irregular heart beat so on waraferin. I have had symptoms on and off since 2005, I was admitted in January that swelling on the brain was suggested and referred to a Nuero, who passed it off as Migraine driven as MRI of brain clear. he ordered a cervical MRI to be sure, this came back with narrowing and suspected trap nerve and an Xray on lower back which shows spondilitis, there is narrowing at the base and neck of my spine. I was then sent to a Nuero surgeon to see if an operation on the trap nerve would help the strength improve in my left arm, but he referred me back as he felt the trap nerve was not bad enough to cause the progressive neuro problems I was having. In September my symptoms came flooding back starting with my tongue tingling and numb, admitted again to hospital with suspected small stroke and the rest of my symptoms started to unravil over the following couple of months. I did see a Locum nuero in October and in the last 8mins of appointment he mentioned that I have MS symptoms but clear scans. MS had not entered my mind but after reading posts on here I realised that on occasions Nuero,s can say things in an appointment but not put it in writing to your doctor, so I mentioned nothing to anybody and waited until letter recieved at surgery. when I rang the surgery and asked what did the letter say and she confirmed possible MS and asked me to speak to my Doctor, so i made an appt with him. He confirmed it may show in a couple of years. I was still off work at this time and my Manager had arranged a meeting at home with HR, so I passed on my symptoms to them and told them what had been said about MS. they arranged an Occupational Nurse to contact me so I requested copies of the letters from the 3 Nuero,s so I could be ready for her, collected them from the surgery and none of them mentioned MS…so now left confused by everything and did not know what to say to Occupational Nurse. I explained everything and she asked me to challange the Migraine theory as my symptoms say MS and consequently declared me unfit to work and has arranged to call be back in January. Its a nightmare. I have paid £150 and arranged to see a private Nuero and it turned out to be the gentleman I saw back in January as he was helping with our Hospital due to our Nuero being poorly. Its funny because all along I had said I had not seen the nuero who was mentioned on the original letter. He has arranged for a new MRI on my brain and spine as its been 12months since I had the last one’s. he said he meets loads of people with MS symptoms but are not diagnosed with it. he mentioned stress can also cause these symptoms too. So like you, I am very confused what is happening to me. I like you are also concerned what I should say to my Manager now.
Hi, it’s really strange isn’t it! And always frustrating that they won’t prescribe Anything for any of the symptoms! I’m debating going to purchase my MRI on disk to have a look to see actually how down they did scan as something is niggling away at me how one minute she wasn’t happy with it then the next day said its fine, I know she was looking for inflammation But should have been looking for something else aswell… That’s my question Or does no inflammation pretty much rule out anything & everything?!
I am lost for words and confused because like you say, they can worry you with the name MS and then retract the knowledge. Its all confusing not having any diagnosis. I am sitting here with weakness, stiffness in my left arm along with twitching and tightening of muscles in my arm and down my left ribs and no closer to any answers. Still signed off work as they say I am not fit to work and going to half pay next month and worried how we are going to keep up with financail committments
just read my notes back, sorry to have a rant!
That’s okay, rant away haha, think it does us good sometimes… I don’t get sick pay from work so that’s another worry for me as we’re eating into available funds fast! I’m asking/begging my gp when he calls to prescribe me something, anything! It’s not on to be left to deal with such things on your own & be told hopefully it fizzle away! Is this a new doctors term lol…
I am not sure about the ‘fizzle away’ comment, it could be new. lol . Each time I have had an episode, I find symptoms subside but it always takes something away permanently. In 2005 it left leg/ankle weakness, 2006 loss of hearing in right ear, Jan 2012 eye sight deteriated needing lenses changing 3 times before it settled, and latest one my left arm/shoulder and hand. Each time it takes longer to get over the smaller symptoms of pins and needles/numbness and tirdness and other wierd sensations. My memory and cognative actions are playing games too not to mention my spelling is taking a backward slide. Oh well, we must keep going…thanks for talking and good luck xx
Hi I’ve just joined hoping to find out some more information, I was diagnosed way back in 1978/79 they say that my MS is now secondary progressive. I have had 5 lumber punctures and an MRI of my brain and spinal cord but not much showed up, no scarring and not much from the spinal fluid but they say MS because of my symptoms over the years. What I would like to know is how often do the medical profession do MRI. I do not see a neurologist as they have past me over to the rehabilitation Doctors who when I ask questions they don’t know much. When I last saw a neurologist that was about 2 years ago he said to me ( It’s a bit late for diagnosis) and all I can say is that my time was wasted. The MS nurse in my area is not much help when I asked her a few questions and should I see a neurologist her answer was NOT EVERYONE WITH MS SEE’s A NEUROLOGIST so as you can see not much support from anyone. Hope there maybe someone out there with some words of wisdom. Big Lizzie
Yes I was diagnosed by a number of test and symptoms in 1978/79 and after many years I had an MRI that showed no lesiions.
What have you been told about this ? I went through the same as you back in 1978 but my symptoms started when I was 16 in 1969 and my GP at that time gave me Valium the first time I saw him because he said it was all in my head, and the next time I went because things were happening he gave me Librium and told me that I was attention seeking and to stop upsetting my parents and grow up. Things never changed with that GP so when I got married I changed to my husbands GP he was great, first time I mentioned what was going on he sent an Nurologist to see me and things went on from there.
Please let me know how things have been with you and if you are getting good support.
Best wishes
Liz
Hello everyone, I’m hoping for some advice. I have not got an MS diagnosis. In March 2016 I started experiencing pins and needles in both of my arms and hands, this persisted for a few months and then started occurring in both my legs.
The pins and needles occurred sporadically, at different times of the day and the only way to relieve the sensation was to shake the limb. This was particularly concerning when it happened when driving. Nothing I did seemed to bring on the sensation. When it started happening more frequently and the limbs started to feel numb at times I went to my GP. She mentioned that it could be MS and referred me to a neurologist.
The neuro I saw is a very odd character, he has poor interpersonal skills and I did not feel confident during his consultations. He referred me first for a c-spine MRI which he said was normal., apart from a hemangioma. He did not scan my brain. At the second consultation he sent me for a nerve-conduction study, again this was normal. He then told me that the pins and needles were something I just had to live with as he could not explain them. He said if they got worse and persisted for longer periods I should go back. When asked if it was MS he said he could neither prove or disprove that it was without scanning my head… but did not feel that was necessary?!
Im not sure how to proceed from here. The pins and needles are persistent, sometimes the limbs feel numb. I have a pain in my shoulder which I’m waiting for an orthopaedic opinion on (probably unrelated). I wear glasses and my prescription changes annually. No other visual problems. I have IBS. Blood tests are normal.
Has anyone had an MS diagnosis just from a brain MRI with the c-spine and nerve conduction studies being normal?
i have asked another GP to refer me for a 2nd opinion to Neurology in London and hope the be able to persuade them to scan my head and maybe do a lumbar puncture, if they feel appropriate. Do you think this is reasonable? I am very concerned and would like it to be completely ruled out for them to tell me it definitely is not MS.
Thanks in advance and apologies for the length of this post,
Rebecca x
Your neuro sounds exactly, and I do mean exactly, like mine! I’ve had to practically beg him to scan my brain after he only ordered cervical initially followed by thoracic and lumber. I’m still waiting but I do think if you don’t get any answers then asking for another referral is a good idea.
I have had bad circulation in my legs from being a teenager they would go numb and would colapse from under me. I have had numbness in my right side from my nose down my face and into my arm and leg my body would tremour. I can’t climb or stretch without feeling the strain in my legs. My mouth and throat go dry and i have trouble swallowing.i can’t hear properly missing parts of what someone says have poor consentration level and fall to sleep during the day. My body also jerks, my legs arms and torso several times a day. Why can my doctors not diagnose me.
Your posting on a fairly old thread. Might be worth starting up a new one with a bit about your history etc and people may be able to give you some thoughts on your journey thus far!