Hi there,
I’m currently experiencing a variety of problems. Im a 30 year old male and was fit and healthy until this year. In January this year I had a rushing feeling through my legs, felt almost like warm blood rushing around. In late Feb I had a heat sensation in my left foot that happened a couple of times per minute lasting a couple of seconds. THis lasted 2 weeks and was followed by a cramp like feeling in my hands and feet, both sides. I have added a long list of the problems I have had below and would just really like to have an opinion if this could be MS or something else, from what I have read it wouldnt be the normal way it presents but then im not sure what esle it could be, my gp has referred me back to neurology (first appointment was with a junior and she sent me to infectious diseases due to a trip to the philipines) I am now waiting to go back hopefully for a scan. Apologies for the long post…Im getting desperate for help and currently just playing a waiting game.
January
- Strange pain/ tension in oblique muscle – intermittent and changing sides
- Chills and shivers throughout January
- Feeling of hot air when breathing ongoing
- Sore neck – couldn’t get out of bed twice, months apart – ongoing
- More frequent bowel movements – ongoing
- Blocked sinus (still blocked, right ear-inside) - ongoing
February
- Warm sensation in left foot – twitching of left foot (twitching one going)
- Dry eyes, Blurred vision/ pain behind eyes – ongoing
- Shivers stopped
- More frequent bowel movements- ongoing
March
- Heat sensation in left foot stopped when other symptoms started – although have had some sensations in left heel until May.
- Cramp like feeling in outer side of hands – twitching in legs
- Headaches, moving around – some ringing in ears but only 5 or so times
- Strange feeling in feet in morning – almost over sensitive
- Followed by pain in joints, mainly/more predominant in left side (toe worst)
- Mid-march – feeling of numbness in feet and hands, couldn’t sleep with any weight on body (could only sleep on back) this was possible the worst numbness and latest a few nights/days, but took a while to subside.
- Pains in forearms, wrists, fingers and deep pain in calve muscles, worst left side
- Pains in throat – not inside but rather on the outside
April
- Tension in sciatic nerve – felt like a string going from left foot up to groin and down to right foot, lasted a day followed by deep leg pain for approximately one month
- Some blurred vision
- Light headiness, more often when standing - ongoing
- Overly tired on occasion
- Pain during sleep – any pressure on arms/ legs results in numbness - ongoing
- Headaches – intermittent
- Inner ear – blocked ongoing
- Fullness feeling in head- this has only started happening more recently, very hard to describe just feels full, almost like a pressure
May
- Pains between eyes, intermittent
- Vibrations in feet/legs, arm and hands, pulsing ongoing
- Scalp pain – burning under skin – intermittent
- Occasional pulsating vision on outside of visual field - max 10 times – on sitting down
June
- Tinnitus - soft palate in mouth moves up and down causing clicking in my ear
- Nerve pains – leg predominantly
- Intermittent ear pain/jaw pains- recent
- Temple pains – both sides of head
- Smaller vibrations
- Twitching eye right eye with slight swelling- approx one week
- Tightness in leg muscle
July
- pain in side of face/head - almost like burning
Would be very grateful for your opinions
Jez
Hi I saw your message and didn’t want to just skim by. Im also waiting dx but have many of the same symptoms, my mri is due in two weeks and have a neurology appointment in September. I would really push for a scan and a neurology appointment but remember it all takes time get the doctors to listen and do something, that’s their job. Best of luck x
Did they mention Lyme Disease when you saw the ID people? This can cause all of your symptoms and does mimic lots of other conditions. Just a thought as your symptoms are so diverse and include shivers etc.
Hi thanks for your comments. I have been tested for Lyme but it was negative. Also been tested for other possibilities such as b12 and hiv etc. Fortunately I have a very concerned gp who is doing her best to get me back in to neurology. I’m slightly gutted as I went to neurology and theygave me the all clear after reflex tests and strength tests. Unfortunately I didn’t push for the scans so am now at the back of the line waiting. I feel asthough I’m getting worst week by week and it’s pretty scary.
HI Jez
Sorry to hear about all the problems you’ve been having. This limbo-land is no fun, is it? Regardless of what it turns out to be, not knowing is an absolute killer and you have my sympathy.
A good, supportive GP is worth their weight in gold. I think anyone on this forum will attest to that. It sounds like she is pushing to get answers for you and you can never underestimate what that’s worth.
Not much advice to offer you other than you need to be firm when you see the neuro. I would really push for the scans - it’s the only way to find out one way or the other (in most cases, and as far as MS is concerned).
I hope the appointment comes through quickly. Unfortumately, the diagnostic process for these things can be very long and drawn out.
Best of luck - keep us posted.
PG xx
Hi There,
No the limbo land is absolutely horrible, Im have tempted to pay for a private MRI but they cost a small fortune. I understand what you mean about a good gp, I saw four GP’s in a month regarding the roof of my mouth twitching before one finally took me on as a patient and had the sense to tell me it was problably neurological. I will push for the scans, im gutted I didnt the first time around…my first appointment was three months ago and feel like I missed an oppurtunity.
My current concern is that if it is indeed ms, which to be honest it isnt really presenting in the normal way, then why hasnt it remitted yet? its been almost six months and I understand the possiblity of progressive but prior to the 9 months ago I never had a single symptom. I’m quite worried its something other than MS at the moment. Any suggestion welcome.
Thanks for the support,
Jez
Hi There,
No the limbo land is absolutely horrible, Im have tempted to pay for a private MRI but they cost a small fortune. I understand what you mean about a good gp, I saw four GP’s in a month regarding the roof of my mouth twitching before one finally took me on as a patient and had the sense to tell me it was problably neurological. I will push for the scans, im gutted I didnt the first time around…my first appointment was three months ago and feel like I missed an oppurtunity.
My current concern is that if it is indeed ms, which to be honest it isnt really presenting in the normal way, then why hasnt it remitted yet? its been almost six months and I understand the possiblity of progressive but prior to the 9 months ago I never had a single symptom. I’m quite worried its something other than MS at the moment. Any suggestion welcome.
Thanks for the support,
Jez
Hi Jez,
Like you I’m in limboland. Obviously, I’m not a doctor and trying to make unqualified guesses concerning what might be up with anyone posting could just lead to greater stress. The one thing that is striking about your symptoms though, is your chills in January. Certain conditions can be triggered by viral or bacterial infections, even in certain cases by vaccines. When there is a long list of symptoms, the neuro may not fully take in all of it, but do be sure to emphasise the onset symptoms that occurred. It could potentially help them find a diagnosis more quickly.
I understand you’ve had reflex tests and strength tests, but the neuro didn’t pick anything up. That doesn’t mean that nothing is wrong. On my first exam, the neuro didn’t see anything. It was only on the second appointment that she found evidence of nerve damage in my foot, which prompted her to investigate further.
You used the word pulsing a couple of times in your symptoms. I don’t know whether this is similar to what I experience. When I hit a flare my body pulsates, sometimes all over and particularly at night. At times it has been so strong that the I’ve had to try and sleep while clenching my jaw, because the pulsations are even coming through my teeth. I’ve now come to the personal conclusion that this is when I get an inflammation kick. I know I have nerve damage in both feet and the bottom half of my legs, but I don’t know what’s caused it for the mo.
Keep putting pressure on the docs. It sounds like your onset has been rapid.
Astro x
Hi Astro,
thanks for your reply. With regards to the pulsing, it isnt really a full body pulse, although this has happened once or twice for short time periods. MOre that the vibrations inmy legs and arms tend to pulsate…I have also had my vision pulsate a few times, almost like the outter edge my visual field becomes blurred for a second then normal then blurred and so on. Generally hasnt lasted long, max a minute. My legs seem to be getting more and more sore which is freaking me out a bit, like a dull ache, almost like ive been for a long run…but i havent. Im trying my best to put the pressure on but its so hard since the neurology department is so busy they just dont seem to have space.
I agree the shivers do seem post viral and this was my first line of though but because of the palatal myoclunos I seem to have developed im leaning towards something more neurological in nature. This seems like a pretty rare symptom and im hoping it will be enough for the neurologist to warrent testing! we shall see.
anyways, hope your doing well and getting somewhere with your problems
Jez
Hi Astro,
thanks for your reply. With regards to the pulsing, it isnt really a full body pulse, although this has happened once or twice for short time periods. MOre that the vibrations inmy legs and arms tend to pulsate…I have also had my vision pulsate a few times, almost like the outter edge my visual field becomes blurred for a second then normal then blurred and so on. Generally hasnt lasted long, max a minute. My legs seem to be getting more and more sore which is freaking me out a bit, like a dull ache, almost like ive been for a long run…but i havent. Im trying my best to put the pressure on but its so hard since the neurology department is so busy they just dont seem to have space.
I agree the shivers do seem post viral and this was my first line of though but because of the palatal myoclunos I seem to have developed im leaning towards something more neurological in nature. This seems like a pretty rare symptom and im hoping it will be enough for the neurologist to warrent testing! we shall see.
anyways, hope your doing well and getting somewhere with your problems
Jez
HI All,
Again thanks for your comments! I think I have finally found out what was wrong with me and why I had such an array of issues. Turns out I caught dengue fever and Chikungunya virus, both of which are quite nasty! anyhow they must of infected my CNS somehow and are no causing trouble everywhere. I guess this is a good think in someways although doesnt feel so great at the moment as theres not treatment and the chikv virus is soo rare in the UK the docs are clueless. Anyway just thought Id say thanks again to those who comment and all the best!!
thanks
Jez
Unlucky! I hope that your treatment is well underway and that you get some good support. Wishing you well!
Goodness! A am glad that you have found out what the matter is and hope that your body’s self-defence system quickly turns the tide and gets on top of the infections.
Good luck.
Alison
Hi All Merry Xmas to u all. Just thought I’d update this as am now back in limbo land. Apparently I had false positives for the two viruses,so frustrating as it was actually a relief to think I had a virus. I’m still having many issues and it’s almost been a year…I think they are working me up for ms at the moment. Due a spine mri in the new year, nerve conduction study and possibly lumber puncture. I had a clear brain mri without contrast so not to sure what to think now. Currently the pains have subsided dramatically but I still have twitches and jerks constantly, also losing the sensation in my left foot. When sitting for too long my lower back gets numb…I guess due to compression on the nerves,very strange and doesn’t really sound like ms but I’m no doctor. Any more opinions would be appreciated. All the best J