Hope it's ok for me to post here?? Quick Intro - I'm a 50 ish Mum of 2 plus husband and neurotic Border Collie! Currently under investigation for 'Neuro Inflammation'
Acute symptoms earlier this year saw me in A&E,eventually ended up on Neuro Ward for 5 days, was given 3 days IV Steroids & discharged with MRI results of 1 x non enhanced and 1 x enhanced spinal cord lesions, 'non specific' white matter changes in brain and Lumbar Puncture results pending.
Got letter today from Neuro, part of which reads:
"The lumbar puncture demonstrated 6 white cells, no red cells, a CSF protein in the normal range at 0.72 and a normal CSF glucose at 3 with a blood glucose of 4.5. There were oligoclonal bands seen in the CSF only which is supportive of an inflammatory explanation for your neurological problems, and suggests that the area of abnormality seen in the spinal cord was due to demyelination.
I will arrange for you to be seen in my next available follow-up appointment so we can see how you are recovering from your symptoms since you have had the intravenous steroids, and then we can decide whether or not further treatment will be required."
Thoughts anyone?? Have appt in October, not sure how I'm feeling , don't like the phrase "suggests the area of abnormality due to demyelination" .....consultant hedging his bets I guess??
I would welcome opinions based on others' diagnosis/non diagnosis experiences!!
I've had MS for 14years but it's not been to bad. Before Christmas I had a small relapse then it went ok on 16th Jan.however the day after 17th Jan below the waist went frozen and above the waist went numb.my balance isn't good and because I'm frozen and numb (worse on right ) my right foot is quite jerky and I can't feel the floor (on the right ) gp isn't too knowledgeable about MS and another gp suggested steroids or just sit it out.Cannot see a neurologist for months. Is there anything I should do like rest or exercise (which is best) steroids or sit it out I just don't know ? I'm currently on 2 lyrica a day
Hello everyone... well as in the title I dont have a diagnosis yet but enough pointers to suggest possible ms... hence visiting here :-D .
I am Laura and I am a grandma to six wonderful young people from 1 year old to 16 years old ... so no spring chicken lol. I am privileged to work with rescue animals and people who have challenges in their lives so keep quite busy... oh and I "do " panto as well so def up for a laugh.
The reason I am hear rather obviously I suppose is that I have symptoms that might.lead to that diagnosis of ms. The latest that led to at last having referral for mri and neuro appt was two separate episodes of foot drop and leg weakness (one three years ago left leg and one now right leg) as well as in last three months transient double vision, cold sensations in leg / abdo, bowel leakage, tics ans cramps in right leg , facial neuralgia and hot flushes. Of course looking back over the past years can now see other possible more minor issues possibly symptomatic so this may be have been on the go as it were for years .
Scan on thursday.. have had bloods done but no results yet... waiting for neuro appt to arrive. So the limbo challenge proceeds... just feeling the need to connect with others who will understand now.... thanks.
Combination of things today, that have unnerved me.
Firstly ......A conversation with a neighbour about another neighbour who has MS. A lady that I've never met.
Apparently her MS is "in an advanced stage" when I asked how long she has been diagnosed, I was
Told 5/6 years. I Myself have been diagnosed with RR 4 years in November.
This left me wondering how much time I have left, before I am regarded as being "in an advanced
Secondly....... I asked My Consultant how I would know if/when I had moved to SPMS. To which he replied " your on the boarder" Dr Z is a man of few words. So the nurse jumps in "if your worried we will stop the medication (Rebif) you can continue with it until you are in a wheelchair"
Say it how it is I thought! Quickly putting it to the back of My mind.
Lastly........for the second month running the delivery of My drugs, have been messed up. it used to run like clock work. when I asked why this is happening. Bupa Home Care said I'd gone on to monthly prescriptions. where as I'd been on 6monthly. This has led me to thinking, are they getting ready to stop.
Guess My question is: How long before RR turns to SP. If it's about 4 years, does it mean that you
Could progress at this rate, through all the stages. If you even go through all the stages. Bet you can tell how Nieve/Daft I am. I know that everyone is different.......but!!
Sorry to ramble & go on. But I know tonight could be a long night, as this is just going round & round in my head. Usually I try & stay positive....honest.
Some of you may remember me but it's been a long time since i've posted here, I thought some of the limbo landers might be interested to hear that after several years of various tests & specialists i've been diagnosed with Ehlers Danlos syndrome - something i'd not even heard of until recently.
When i read the symptoms, they fitted exactly, yet this was something I had never concidered. I have had a Lumbar Puncture & MRi, so my symptoms fooled the neuro & rheumy, not just me. This is one of the best links I have found which really show how symptoms could be confused with MS http://inthefringes.wordpress.com/eds/
The reason i had such a bad time with my Lumbar Puncture was probably down to dura ectasia & that spinal anathesic is often uneffective in people with EDS.
It can also cause impaired proprioception & vision problems. My 'drop foot' is actually extreme hypermobility, causing my ankle to be very unstable and floppy & the numbness & tingling is caused by my joints spending alot of their time slightly dislocated or mis-aligned which means they press on nerves & blood supply. At night my shoulders actually drop to the lowest possibly point which is why i waked up not able to feel my arms.
My joints have always clicked & cracked as a move, if anyone else has this symptoms its definately worth looking into. I was told by doctors that it was due to air bubbles in the joints but it is actually due to my joints subluxing (partially dislocating).
The bad news is that it has also effected my heart, i'm waiting for another MRI. It's also genetic so I'm having to arrange for my two children to be tested.
I'd like to say thank you to everyone who really helped me when I was terrified I had MS & was going through tests & hope this info can be of some help to someone. It does make you realise it is important to keep an open mind whilst in Limbo.
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