Hi there. I’m from
the USA. So right now I am scared and so is my wife. Here’s my story.
For the last three years, I’ve noticed that my memory isn’t great (although the change is very mild). My balance didn’t seem to be what it used to be either (although that too was mild, and I was lifting heavy weights and running with no problem).
Around Dec 22, 2018, I got a weird headache in my left temple— three mild pulses every half hour or so. The left side of my face went slightly numb. A day later, the numbness subsided and I got mild lightheaded was and felt off balance. No one could see me walking different or anything but I could feel it and knew it wasn’t right. This lasted three weeks straight, with occasional tingling in my right foot and right hand.
This past Tuesday Jan 14,2019, the dizziness ended. Then my right hand and right foot started getting tingling, itching, and patches of slight numbness. The left side of my face also became slightly numb once again (although barely perceptible.) the tingling and itching moved up and down my right leg, and reappeared in my right hand, never staying in any one place. Then the tingling moved to my left hand and my right is fine. Yesterday and today I have had very mild but perceptible muscle twitches in my right leg. I think my right leg feels a little more tired than my left, although I am not sure if I’m imagining it. I can still do single legged squats and so forth with my right leg and as of today I am walking fine, although every day my right leg seems to have some new symptom/involvement. My left leg muscles may now also be twitching.
So I did a TON of googling and I really can’t find anything that fits these symptoms except MS. Other things replicate some but not all of the symptoms. It seems like at my age it would probably be PPMS too. My grandmother on my mom’s side had severe PPMS, was confined to a wheelchair, then bed, lost the use of her arms, lost the ability to speak, and died.
I have an appointment with my GP Monday. I have always been a brave man but honestly right now I am really scared. My wife is also terrified. I know I am jumping the gun but I can’t seem to help it. MS scared me so much.
Hi everyone,
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!!
Thankyou :)
Hi everyone,
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.
Take care
Panda x
Hi everyone just to introduce myself I am 40. First developed burning pain to arm 4years ago had nerve testing and told normal was also getting words wrong sent to neuro who told me all those symptoms were normal everyone got them. The burning continued intermittently lasting a few weeks then would go. Might be any arm or leg but only 1 at a time. Also started with chronic daily migraine so told these could be symptoms of that and would clear along with migraines on meds-well head pain went the rest didn't. About a year or more ago I developed urge incontinence and I assume incomplete bladder emptying as several times I go to the loo stand up and legs are wet. Earlier this year I started falling a lotwwith tingling/ice cold sensation to rt leg and getting words wrong again or *stuck*. Sent back to neuro who found increased reflexes, positive rombergs and some reduced sensation to feet, undetermined babinski so ?? Ms and sent for head and spine mrion t1.5 w/o contrast took about 45mins total. Haven't seen report but told normal. Bloods normal except low vit d. Past 2mths I developed numbness to lt gt toe and ice cold sensation to that leg and feeling that a tight band is round it causing pain. Very tired unable to get upstairs now without being exhausted and can sleep for England and I used to be extremely fit doing marathon etc. Back to neuro next week but not sure what will happen, what to think etc
Anyway that's my story so big hello
Hi everyone! I'm a 39 year old married mum of one. I work from home. Just over a year ago I noticed that I was getting a collection of random symptoms, including dizziness, stiff calves, shakiness, pins and needles and odd sensations on my scalp. I was clumsy, forgetful and had trouble getting words out.
I went to my doctor who advised keeping a symptom diary (I may have had a blood test at the time but I've forgotten).
So, a year later I was still experiencing these things. They vary from day to day but the fatigue, dizziness and twitching are persistent. My GP tried meon Betahistine for the dizziness but that didn't help. He suspects M.E. but I agree with my Shiatsu practitioner who doesn't think so. Nobody has said MS to me but I strongly suspect it. I'm due to see a Neurologist in late November.
Waiting is hard, so I choose to talk about this!
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