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baffled

hiya lively folk, i have messaged before and just wanted to update you. i have always felt like i have fluid in my left hand since this began in june. then the skin on all my knuckles split, then my right knee got hot n puffy n walking was a non event. aspirin n hot baths have been my saviour. then this week my left knee went hot n puffy. hot baths and epsom salts and aspirin my saviour again. now the fluid in my hand feeling has gotten to visible puffy odema. this was my original presenting symptom which got me an mri and my dx of m.s. feel free to give input. xxx

Sounds very strange! I haven’t heard of oedema being an MS symptom. I had a funny image of all that water pouring out when your knuckles split!! Sorry!! Might the oedema be a seperate thing and coincidental to the MS or do you know more about it being relevant? I think you should go back to your GP and not just keep putting up with it - there might be something else they can do to help you.

Deb

Sounds strange,but you are handling it very well.You need to grace the GP with your presence, and if he/she/it just says,“MS”,get them to explain in minute detail and if you still aren’t happy,'praps you should ask for a second opinion.

Wb

i put my original pist up titled diagnosed in july. when i get in a bath a lovely hot bath i feel fluid disapating but it doesn’t resorb back into my system. i had what the neuro considered to be ON but i had a ct head in eye casualty which showed my left sinuses to be utterly compacted. i took sudafed n nuked my nose with me diga steam sauna n after 10 daysmy vision was perfectly restored. my hand thing did radiate down the left side of my body but only lasted a week. my fingers didburst at the tips n fluid did come out but it was small, but over the monthsthe fluid has just continued. i am showing the doc tomorrow n am gonna ask for explanation. thanks for replies. xx

Hi Purple-haze,

I replied to you last time, but I’m glad you’re going to the doc’s, as to me, this is still not sounding as if it’s to do with your MS.

I’d be very interested to hear whether your doctor thinks it is, and if so, exactly what’s happening to cause it, as although MS can cause a lot weird things, this one’s not usually on the list! If it IS an MS thing, it must be a pretty rare one.

On the positive side, if it’s not the MS, but something different, it might respond better to treatment.

Hope you get it fixed, anyway.

Tina

well this was my original presenting symptom hence why i am baffled. xx

Hi purple-haze,

To be honest this doesn’t sound anything at all like MS but it does sound a lot like lymphoedema. Was your diagnosis given to you by a neurologist or by your GP?

Of course it is possible that you do have MS especially if your MRI was conclusive for this and you were showing clinical signs on neuro examination that are consistent with MS AND have lymphoedema as well. Having MS doesn’t protect us from other diseases sadly

I would certainly be heading back to your Dr ASAP because if you do have lymphoedema it is very important to get it properly diagnosed and treated.

All the best,

Belinda

ok so i went to the doc n she saw the size of my hand n said it wasn’t m.s related. i reitterated the fact that my hand has been slowly ballooning since june n it’s only now she can see it yhat she’s taking it seriously. it was my initial presenting symptom along with sinus pain n congestion that resolved with sudafed. they dubbed the eye prob as ON but i had only sinus pain and no pain on eye movement at all. i have never had blurred vision or any vision issues since my sinus cleared up. i have no issue with fatigue, i don’t have any temperature issue, i spend hours in a sauna on maximum heat. i had gotten into a state when i saw neuro last week cos he just didn’t listen to me to even look at my hand. on the strength of that i got ref to psyche team! grrrr!

Hi again P.H.

Well, I can’t say I’m surprised, as I’ve always been suspicious this wasn’t MS-related, but what else does she think it might be, then? And, more importantly, what do they intend to do about it? Do you need more tests?

Not everyone with MS has fatigue, vision problems, or temperature issues, so I don’t think that by itself proves your diagnosis is wrong. I assume it was based on more than symptoms, and included some combination of MRI, VEPs and lumbar puncture?

As Belinda has already said, MS doesn’t protect us from other illnesses, unfortunately, so it’s possible you have something completely unrelated. But I’d give serious thought to changing doctors, if I were you, as it doesn’t seem right that yours has taken six months to notice you’ve got symptoms that can’t be explained by MS, despite being told of them before.

I’m glad you went back, as this shouldn’t be neglected.

Tina

x

Oh thank goodness your GP is now taking it seriously. Early stage lymphodeama can be very hard to diagnose so let’s hope you are on the right track now.

And your neuro… GRRRRRRRRRR!!! Words fail me

All the very best,

B

the thing that baffles me is my hsnd starts to get better when i have been on antibiotics.

Well, that is an important clue - mention it to the doctor, in case it sheds any more light. Though there’s always the possibility it may have been coincidence, and something that comes and goes anyway.

T.

Hi ph,

If it is lymphoedema (and of course I am NOT a doctor so that is a big IF) but if it is, the improvement with antibiotics makes sense. With lymphoedema because of the lack of circulation of the lympahtic fluid and the heat from the inflammation it is actually a perfect breeding ground for bacteria and infection is a common complication of this disease.

I agree with Tina, definitely let your doctor know about this; it may well be an important part of the jigsaw.

B

well guys, the doc gave me doxycylin antibiotics for my chest n my hand is respondimg yet again. i know m.s doesn’t cause visible hand swelling and ON seldomly occurs without pain n clears in 10 days after a course of sudafed. however my remaining symptom responds to penicillin, amoxcillin n now the doxy. i have had 1 mri, seen plaque evidence so i may well have m.s i just aint had any symptoms of it yet. xx

i’ve since had a r/v with neuro, i showed him the photos of my hand and how it responded to the doxy so well. he said none of my symptoms are consistent with m.s n that the plaques on their own don’t even idicate a problem. one of his team in the room said the new fangled technology of m.r.i scanning show an image but without the clinical pictire to with it, it doesn’t mean anything. he’s r/f me to rheumatology because he feels my neuro symptoms are part of a systemic bacterial infection given they all respond positively to a yeyracycline broad spectrum drug. got to wait til march for the appt though. on the upside, whatever this is, is eating me slowly from the inside. nearly 7 stone lost in 6 months. the only time i could msintain weight was when i was on the doxycylcine.

Bloomin heck…7 stone !!

yeah. in may i was 21 stone, i used to run 3 miles 3 times a week and couldn’t lose a bean. i get this flu thing then my hand went odd,then sinus thing which lost me my central vision in left eye, took sudafed n eye came back to normal, then tonsilitis n i got a bit better with the meds for that, then i had steroids which made me bad n i had to learn to walk again then upper chest infection n recurring sinus problems. my balance is awful n i tell my mum who walks with a frame to slow down cos i can’t keep up. i had to give up wheat cos my left hand throbs when i eat wheat. it never used to. sine doxy finished, my hand gone puffy again n i get imprints from mobile where the interstitisl fluids are just hanging around.

Are the medical people aware of this weight loss? Surely that in itself warrants urgent investigation.

I know most of us would love to lose weight but as Mrs H says bloomin heck 7 stone!!!

Pip

Especially in that short time.

they know n seemingly aint bothered. i think its horrid for anyone to be left dangling. it annoys me that i hastily dx after 16 days of symptoms. the neuro who i transferred to is more on the ball. the older methods of diagnoses of a lot of things have been chucked put the window since tecnology got more advanced. in history , patients were immersed in hot water n if they experienced weakening fatigue and hightened symptoms due to the inflammatory process that increased temperatures cause then this was a strong pointer towards m.s. amongst a lot of other pointers too. sitting in a camera tunnel that takes pretty pictures doesn’t expose you to the same chain of scientific biological responses which is why my new neuro has r/f me to rheumatology. the human body and its reactions don’t change because a new machine is invented and he’s right, old methods shouldn’t all be disguarded. as i am sure you are all aware, the term multiple sclerosis is a greek term meaning “multiple scars” it’s like fibromyalgia - this term means muscle pain. they are effectcts caused by somethinh and not all the same something. my original neuro sent me a letter with dx as presumed m.s and no major m.s. i suppose drs will tell women they are presumed pregnant because their tummy is round and visible just like plaques are visible on gadget cameras. am sounding off i know but the fact that there are so many people affected by things that dubbed as m.s which years later turn out not to be the case at all. huffed off doesn’t even come close.