Confusing symptoms no diagnosis as yet


#1

Hi All

Thanks for allowing  this post, my thoughts and best wishes go to everyone.

I am a 47yr old active male running own small business and have a very curious condition.

Over the last year and a half i have problems which i have listed below.
I did have Perth's disease when younger which has affected my hip joints and put my symptoms mainly down to this and age, but it seems this is not my problem after months of various symptoms 
Below is a list of what i,m suffering most are sporadic which others may relate to.
1. left side weaker
2. Horrendous lower leg and feet cramps but not always, more prominent whilst lying in bed
3. very sore ankles and feet start early day then last all day
4. Intermittent creepy crawly and burning feeling in both legs, cant sleep and only happens when resting
5. Had sporadic burning tingling down left side.
6.  Inner like vibrations left side stomach area muscles
7. Can't lift left shoulder higher than vertical, no pain just too difficult
8. Reduced left arm swing coupled with left limp
9. Harder and slower to get up now from rest or relaxing
10. Writing is very poor, i,m right handed, starts normal messy but letters crushed then gets smaller as hand tires. this is new and found this out when i had a written report to do.
11. Sporadic run away speech missing and forgetting words
12. Terrible nightmares
13. Odd time see shadow or flashes from eyes.
14. At times noise can make me cringe
15. Sore leg muscles which easily last all day this is affecting my work as its a regular inner throbbing annoying pain.
16. Had some left face and head shooting pains.
17. Lifting left leg whilst sitting is like pulling against a strong magnet.
18. Left toes hard to wiggle
19. Tired, tired, tired could sleep come 2pm
20. I have no get up and go its now gone

I have been for mri scan summer of last year for suspected Ms but brain scan was clear, Gp still says all symptoms are Ms related. Neurologist prescribed nightly Clonazepam as i have a more essential tremor shake, not a single hand tremor, the clonazepam has helped a little with Night terrors and shakes, however due to continued problems i,ve  had to go back to gp this time with my with wife who explained a more accurate picture. The gp has arranged a desperate appointment with the neurologist. I regularly weight train 3. days a week hence reason i noticed left side getting weaker and walk most other days, so i lead quite an active life style.

I work with electronics from soldering to board repair which is now at the point that it is so difficult to work with the small parts especially my left hand that i have now stopped repairing circuits.
Neurologist has listed lots of unknown problems on report sent to my gp but there was absolutely no conclusion to what was causing the symptoms. My wife did some internet searching and came across dopamine deficiency which she mentioned to my gp, but he would not comment as he says he cant be sure, In fact the dopimine search then lead to the Parkinson site.
Climbing stairs is a task and a half sometimes very slow you tend to look upwards and say f??k here we go again.
Yesterday whilst climbing my stairs to go to bed i seemed to freeze on the third step, this lasted seconds but was pretty frightening.
Not one to guess but i will be updating on the site if its ok as i finally reach diagnosis of whatever is wrong with me.
Hopefully it may or may not help others with similar problems, with maybe some input from others.
At the moment still waiting on 2nd Neuro appointment.
Gp still says symptoms are typical of early Ms but won't speculate until seen by neuro again.
Thanks everyone


#2

Hi to you too,

PD like some other conditions sadly can't be diagnosed by any single test yet. Many of us would have had a range of tests which ruled other conditions out first. For example I was tested for Wilsons disease, thyroid function to name just two. On your 20 point list there are some points which some PWP do encounter. That said not everybody with PD will encounter the same symptoms as others.

Waiting for a final diagnosis is no fun, at least once diagnosed with whatever it maybe you will be able to tackle it with a direction and learn yet more about it.

Hope things progress for you soon.


#3

Hi Tractorman

Thank you for replying

I agree the not knowing and wait is horrendous, blood tests were done and ruled out other problems. It may sound pretty unreasonable but i think i,ll be glad to a point when i have a diagnosis of something and hopefully help sort me out. I tried to ignore the symptoms but this is ain't going away. At this time the symptoms are pretty sporadic apart from the limp lack of sleep muscle pain and loss of left arm swing. Its affecting my work which is causing depression.

I,ll keep posting as i'm sure there are loads of people out there with similar symptoms and automatically think Pd.

I,ll update with future tests until diagnosis. It may provide valuable information for others.

 

 


#4
Hi joeideal, Reading your post I can sense your frustration. I agree that once you have a diagnosis there is a sense of relief as then you can get to work on at least relieving symptoms. As tractorman says Pd has many varying symptoms that its hard to diagnose. Good luck

#5

HI Joeideal

 

I am recently diagnosed about two  and a half years now. I am 62.

Some of you symptoms are very similar to mine left side weakness, reduced left arm swing and limp (I tell friends i walk as if i have had 10 pints) No tremor neuro told me 30% of PD 's don't get a tremor

Another tell tale for me was loss of sense of smell well ahead of diagnosis, apparently ability to smell is controlled  from the same area of the brain affected by PD.

Finally, although a bit personal, you may experience erectile disfunction(common in PD but not often talked about) by us stiff upper lip men. You can get help for this from your GP. 

As already commented on there is no test for PD  so you have to rely on the neuro's clinical diagnosis.

Keep pushing you need closure on this  and there is life after PD with the right treatment


#6

Hi Taffy Tom

Never thought of smell but after reading your comment it seems i cant smell or taste some things the same anymore. I have suffered erectile disfunction and  total lack of interest again put it down to age. I have been taking 80mg Statins for slightly over 1 years for high cholesterol and my wife asked me to temporary stop taking these as she read this could cause and be confused with the symptoms of various problems but in all honesty the only things that has changed since stopping taking my statins 1 month ago is the burning legs at night and the stuttering is improving, could there be a connection here.?  All other symptoms are still there left weakness, slowness left side, lack of arm swing harder to rise from resting.  A couple of evenings ago whilst resting in front of the tv  i took the most severe cramp in my left foot i have ever had, this twisted my foot inwards " tears in eyes honestly so sore" that lasted about 5 mins and left my calf muscle foot and lower back of leg muscle sore with like a buzzing for 2 days. I also get like buzzing in my left foot or like water running through it when i put shoes on at times, i loosen shoe and still there " really strange annoying weird feeling" . My appointment with nuero is in 4-5 weeks due to back logs so will keep all posted. Does anyone else have difficulty when trying to turn over in bed to the side that is weaker.


#7

My sense of smell and taste are also affected.  I often have to ask my husband how the food tastes as it looks delicious but I can't taste a thing frown


#8

Hi Taffy Tom, ref turning over in bed, try this www.http://easymovesheets.com  Bought one of these sheets last month to try it out, blooming marvellous! Just waiting for the delivery of a second one!

 

Best regards, Tractorman.


#9

A NEW UPDATE

I am 47 years young and have not been diagnosed with PD as yet because gp thought i had MS, However i do have ongoing hospital appointments, my visit with new Neuro in March was a long 1 hour exam i was diagnosed with FND with further scheduled visits arranged with the Neuro due to displaying Parkinson type symptoms not MS as first thought. I,ll update this post with outcome as i,m due second new Neuro visit in September.

Neuro has ruled out MS and said not PD but due to displaying Parkinson symptoms and non Parkinson symptoms which he said is very rare he has decided to keep a careful watch over me which has left me with a Limbo diagnosis of what is going on.
During my Neuro exam I had a Negative hoovers sign and lack of left arm swing, no mask bad tremors and had limited movement in left ankle and left arm.
In my case i have left side weakness, left leg limp/drag stiffness in Achilles heal and shin with odd tremor on femur and foot, sometimes take really bad cramp in left foot that pulls my foot like a claw especially after exercise which leaves me with foot pain for a couple days. Always stiff in the morning and during repetitive tasks i will slow down. I get little sleep, no trouble falling off to sleep but waken nearly every morning between 3 and 5am, i suffer night tremors shout and kick in sleep usually 2 or 3 times a month and when stressed the symptoms get much worse. I also suffer from anxiety and depression due to the frustration of sleep and lack of movement. I first noticed symptoms a few years ago when my walking was becoming difficult then stiffness every morning left side slightly dominant but more a whole body stiffness that stays for a few hours, i also have terrible trouble turning over in bed and getting in and out of the car .  I thought i had injured myself in the gym or whilst walking and actually thought the symptoms would go away but they have not. One year ago GP put me on Clonazapam(Klonopin) which new Neuro stopped as i felt they did not work, GP then wanted me to try anti depressants which i did try to get some sleep but due to me feeling dizzy when i stand up fast they made me more dizzier and out of it i stopped them, medication was mitrazapine 15mg. 
I have a permanent Achy left shoulder and sometimes neck with limited movement  but i do not have a perminant tremor. 
My symptoms are better some days than others and has even myself thinking its all in my mind. I constantly exercise every day and cannot run or jog anymore because i usually take instant cramp or pull muscles in my left heal due to the stiffness which is a put off so now stick to walking, I also weight train every other day even though the exercise causes slowing down and aggravates my shoulder , what used to take 40 mins in walking same distance is now at 2 hours because i just keep getting slower with left leg dragging and getting achy, i get to the point i have to stop and wait 5 mins before i set off again. Whilst weight training my left arm will give in pretty fast, the reduced movement during exercise contributes to my anxiety and depression however on a good note i feel that for a few hours after exercise i have more energy, no idea why but it feels that way. My body weight is all over the place and i find it very difficult to control now which is very frustrating, i mostly eat healthy foods .
My Limbo diagnosis has left me in a frame of mind and attitude of "who cares about yesterday or tomorrow, today is a happy new day ". life is just too damm short. 
I am now trying tai-chi which i find is very relaxing and long term hopefully help with my sleep issues.  A complete diagnosis will help me move on and deal with the problems at hand and allow more life adjusting,  but it seems the latest pool diagnosis with neuros is diagnose with FND until they are sure they have it right. FND is a very real diagnosis but can also be a really bad lasting diagnosis, often abused by many specialists.
I,m sure my my Neuro and GP have my best interests at heart and i truly trust both which i think is a good start for any person with illness.  My GP has been a real gem who constantly monitors me every 3-4 weeks, takes notes and passes to my Neuro. My GP explained that there are so many ilnesses that can mimic each other especially in early stages that time is what will give a correct full diagnosis with two of the main difficulties being MS and PD which closely relate to each other in early stages. A diagnosis will be done on a process of elimination. My MRI for MS was clear and to date my blood tests have been fine apart from elevated cholesterol which i have medication for.  In fact the FND was diagnosed due to myself having bad shaking episodes, hot flushes, feeling sick and faint when i was in consultation with my Nuero, my wife said that i was very Anxious and thought i was having a panic attack. I actually thought it was because i had a cold comming on and the hospital being hot coupled with poor sleep just elevated it. Now not sure what caused it but i have noticed that i do start shaking when feeling vulnerable or in crowds, something i never suffered or had before. :-)