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cldm

Opinions on diagnosis

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Hi

I am in my low 30's and have had one neurologist diagnose me with parkinsons and one saying I have parkinsonism signs but he is not 100% convinced it is PD. Even I don't think I fit the criteria good enough so I would be interested in hearing alternative ideas.

I have only two issues that have been taking me to the doctor the past 8 years, the first being a persistent tightness in my left shoulder which has been very slowly getting worse and affecting my neck and arm. The second neuro isn't 100% convinced this is related.  The second issue is the one that landed at me at the neurologist, and is the most bothersome, being legs that significantly tighten up when walking. It started out being intermittent and then progressed to happening full time over 2 years or so, and is now at the stage where I can only walk 20 or 30 steps before the cramp forces me to stop.  Around the same time my legs started having issues with tightness, I started having non-stop fasciculations everywhere (feet, legs, arms stomach, face etc).  The fasciculations don't particularly bother me, but the neurologist insisted on a nerve conduction study which were normal.

Muscle relaxers like Norgesic and Baclofen have made no difference (although the tend to help with sleeping), but completely to my surprise, pramixperole extended release gave me a full recovery after 6 hours of taking the first 0.75mg dose, and seems to work for about 28 hours. It made me feel slightly sick, and messed with my sleep after a few weeks, so the neurologist switched me to Azilect, which took about 3 days to start working, but also gives my leg issues a massive improvement. I have been on Azilect for 2 months and the leg issues are staying away, and don't seem to have any significant side effects.  I also tried a non-slow release pramixperole 0.25mg which kicks in much quicker, but only has an effect for 2 hours or less, and then my legs go completely back to being stiff again.

I understand these two tablets are aimed at parkinsons, but I feel like this is clouding the judgement of the neurologists.

My only parkinson like symptoms that the neurologists have pointed out are a left hand that doesn't do well in a finger tapping test, stiffness and response to these tablets. I don't have a tremor, normal MRI, normal nerve conduction study, previous B12 shots for slightly low B12 which has remained normal, and take ongoing low doses of thyroxine for mild hypothyroidism which has remained normal.

I'd really appreciate any feedback or alternative ideas to ask the neurologists about.

Thanks for your time.

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Hi Cldm,  request for a DAT scan,this will dinstiguish between parkinson disease and other conditions categorised under parkinsonism.A positive DAT scan will confirm PD couple with other physical exams you might have done.Welcome to this forum.

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yep - both legs are similar in tightness with the left only slightly worse, and both get the cramping while walking.  

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Cldm,

I agree you should request a Dat Scan for your own peace of mind.  If it come back normal, it's possible that you could have DRD (Dopamine Responsive Dystonia). DRD is much more rare than PD but its possible.  You don't have to have a tremor to have Parkinson's.  I've had Parkinson's for quite a few years now and what tremor I have is very minor most of the time.

Dave

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cldm - Usually, actually, pretty much always, Parkinsons symptoms start on only one side.  They can include both sides as they progress though.

 

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My left shoulder was an early issue for me. I would request a DAT scan. Was the neurologist an MDS?  That is pretty important as well. 

 

Good luck! 

 

LAD

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Hi CLDM

i have same issues as yourself both lower legs tighten with hell of a cramps, kicks in at anytime whilst walking, i walk usually 6 miles every 3-4 days with my wife, had the tightning for a few years which started left side then over years moved to right side. One day not too long ago and for no reason whilst carrying out the same walk i came to an instant stop and i nearly fell this was coupled with severe cramping pain in my lower legs.

I too have neck and left shoulder stiffness i have little left arm swing and constant limp on left side, i also suffer from rem or rbd 3-4 times a week, and have mild depression.  Not too long ago and whilst on holiday, I attacked my poor wife in my sleep by kicking her once in the leg ,  immediately when home i sought help and an explanation, the guilt was horrendous for doing something i knew nothing of doing to my wife this also had the knock effect of causing further depression , Doctor prescibed clonazapam or klonapin which luckily reduced the rem, these symtoms have been ongoing for a few years. I too have no rest tremor. 

After the terrifying walk scenario which i actually thought i was taking a stroke, i again went to Doctor then sent again to the Neurologist who immedialy requested a DAT SCAN within the next 2 months as my finger tap test on left fingers,  left foot tapping test, rem sleep disorder and left hand tapping test were not as good as he would have liked.

ill let you know how it goes

I am 47 years old

Edited by joeideal

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Thanks very much for your replies everyone.  

LAD - to answer your query both of the neurologists I have seen are movement disorder specialists, but like I say, one diagnosed parkinsons and the other parkinsonism and is looking/waiting for a cause.  I was really hoping the second neurologist would come up with a complete alternative to explore, but he hasn't, so I might try a third.

otolorin & DaveN - A DAT scan sounds like a good idea.  I have a follow up early in the new year so I will speak to the neurologist about it then.  Some mild form of DRD sounds likely to me too and I spoke to the neuro about it, but he tells me that I would see twisting of the limbs.  Like I say though, a very mild form of DRD fits better in my mind.

joeideal - it does sound similar except without meds, my leg stiffness is full time these days.  My cramps don't sound as severe however because all I need to do is stop moving and the cramp will go.  I actually think my leg issues result from a really tight lower left back, and the meds are actually helping that which in turn fixes my legs, but not sure if that is realistic.  I also swing around in my sleep.  On bad nights I sleep in the spare room, because I worry about swinging my arms into my wife, but that isn't that frequent.  Luckily I don't suffer depression.  My mood and motivation feels better off medication but who knows what that means.  Good luck in figuring out what is going on.  I am really keen to hear how you get on with your scan etc.

Thanks again everyone.

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I have my Dat Scan date which is Wednesday the 18th of October. 

I have 3 tablets which have to be taken before and after the scan to block my thyroid.

Injection at 12 noon then 4 hours later the scan will be performed. I am hoping to get the results pretty fast as i fly off to the Canary islands for an 8 day break on the 27th. The not knowing is more feared than the knowing.

 

Edited by joeideal

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Good luck. And medical "limbo" is not fun...glad you're getting answers. Either way-enjoy your trip.

 

LAD

Edited by LAD

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