hackjo
01-06-2007, 05:39 PM
Hi all,
I understand that you probably receive many posts like this, but would appreciate your advice and guidance as both myself and my family are very concerned at the moment.
I have recently visited my GP with the following symptoms:
- Mostly mild tremors in both hands (mainly right side) and legs (particularly when foot is resting against an object, e.g. table etc.)
- Inability to walk slowly without shuffling and feeling as though I am stumbling, about to fall over.
- Dizziness and feeling of impaired balance.
- Slurred speech or inability to form coherent sentences on occasion.
- Tend to walk into door frames or walls (a parked car on one occasion, which was highly amusing)
- Chronic fatigue
- Stiffness and achiness, particularly in the morning. Can be hard to get up from being seated, feels like there are lead weights attached to my body.
- When running, my right arm in particular feels as though it wants to remain in a static position bent upwards across my chest. I have to make a concious effort to swing it.
- Fingers sometimes "stick" in position mid-movement (although this is very occasional)
- Irritable bowel symptoms (for which I take Lanzaprasole).
- Numbness in various places around the body.
- Tingling and vibrating sensations.
My GP has made an initial diagnosis of Fibromyalgia and is trying me on Prednisolone steroids. These, at the time of writing, are having no effect and as I sit at my computer typing this post, my right hand is shaking and my left leg is bouncing around as I rest my foot on the desk cross-bar.
The GP has categorically ruled out MS (which my Grandmother had) but I am still a little concerned that this may be a more sinister condition than Fibro and wonder whether I should ask to see a Neurologist.
What are the opinions of those who have been through the PD experience?
Many thanks,
John
I understand that you probably receive many posts like this, but would appreciate your advice and guidance as both myself and my family are very concerned at the moment.
I have recently visited my GP with the following symptoms:
- Mostly mild tremors in both hands (mainly right side) and legs (particularly when foot is resting against an object, e.g. table etc.)
- Inability to walk slowly without shuffling and feeling as though I am stumbling, about to fall over.
- Dizziness and feeling of impaired balance.
- Slurred speech or inability to form coherent sentences on occasion.
- Tend to walk into door frames or walls (a parked car on one occasion, which was highly amusing)
- Chronic fatigue
- Stiffness and achiness, particularly in the morning. Can be hard to get up from being seated, feels like there are lead weights attached to my body.
- When running, my right arm in particular feels as though it wants to remain in a static position bent upwards across my chest. I have to make a concious effort to swing it.
- Fingers sometimes "stick" in position mid-movement (although this is very occasional)
- Irritable bowel symptoms (for which I take Lanzaprasole).
- Numbness in various places around the body.
- Tingling and vibrating sensations.
My GP has made an initial diagnosis of Fibromyalgia and is trying me on Prednisolone steroids. These, at the time of writing, are having no effect and as I sit at my computer typing this post, my right hand is shaking and my left leg is bouncing around as I rest my foot on the desk cross-bar.
The GP has categorically ruled out MS (which my Grandmother had) but I am still a little concerned that this may be a more sinister condition than Fibro and wonder whether I should ask to see a Neurologist.
What are the opinions of those who have been through the PD experience?
Many thanks,
John
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barb70
01-07-2007, 04:00 PM
ABSOLUTELY see a Neurologist! The sooner the better. Let us know what you find out. And also try to find one that specializes in movement disorders.
hackjo
01-07-2007, 05:21 PM
Just been bowling and found myself very stiff and stumbling. Speech is also a little cluttered today.
Beginning to wonder about the Fibro diagnosis.
So you suggest seeing a Neuro? Would these experiences correlate with Parkinson's?
Beginning to wonder about the Fibro diagnosis.
So you suggest seeing a Neuro? Would these experiences correlate with Parkinson's?
1track
01-07-2007, 08:06 PM
I'm newly diagnosed with PD, so it's not been that long ago I first saw a Neurologist. By all means get a referral to the best one you can find. It may well not be PD, but it's something you don't want to fool around with, that's for sure! As for your question about does it sound like PD? Many of your symptoms sound like mine. There are just too many things it could be, however.
hackjo
01-08-2007, 02:57 AM
Thank you both. I will be seeing my GP again within the next week to report back on the results of taking the steroids (no change). I will see if he refers me to a neurologist then.
Best,
John
Best,
John
kathyIS54
01-10-2007, 04:32 PM
Hello John I can only Echo very strongly what the others have said, you need to see a neuro.
Much of what you decribe is dead on P.D. But can also be a few other things other then Fibro. Some other medical conditions mimic PD and get mistakenly labelled as PD.
Leave it to the experts, not your family Dr.
Cheers and good luck, Kathy
Much of what you decribe is dead on P.D. But can also be a few other things other then Fibro. Some other medical conditions mimic PD and get mistakenly labelled as PD.
Leave it to the experts, not your family Dr.
Cheers and good luck, Kathy
hackjo
01-11-2007, 06:20 PM
Just a thought - I can trace these symptoms (albeit in a lesser form) back around 4 to 5 years. Would that rule out fast-progressing illnesses like PSP?
cappy7
01-13-2007, 07:45 PM
hackjo, did you get tested for Lyme disease? Lyme disease mimics many other diseases. If not, you might want to get tested by a reputable lab.
hackjo
01-14-2007, 04:23 PM
I haven't been tested. However, I can't think of any situations where I may have been in a position to contract it. I will mention it to the GP. Seeing him on Wednesday this coming week.
I am taking my partner to back up my report. I am hoping that he will realise that this is worthy of further investigation.
I am taking my partner to back up my report. I am hoping that he will realise that this is worthy of further investigation.
monkeybrain
01-14-2007, 06:06 PM
hi...good luck on wednesday, Have got to say that your symptoms mimic mine so accurately that you could be me...
I was finaly diagnosed with pd, 4 years ago, after extensive tests and care in some of the best nero hospitals in the UK, and, i must add, by some of the worlds best neurologists. There was a definate unwillingness to diagnose anything with a name untill, finally i had a scan in london, to test the levels of dopamine in my brain...which were deficient by probably 75-80%...
I now take sinimet (L-Dopa) 5 times a day, as well as high levels of codeine to kill the pain of 'end of dose ' distonia . However, i now feel i have 70% of my life back, at 42 and with 3 kids, i want to be as active as possible. Im very fortunate that i have awonderful understanding family around me who have learned quickly to interprate my ability or inability to move, swallow, fall , smile etc.. i wake up every day, greatful for what i have and am always readt to tell people who ask, that, 'im living with pd, not dying from it.
All of us who suffer with pd, will unfortunately do so differently, but by sharing the things that we experience, we will do nothing but help each other....good luck wednesday buddy
martin:wave:
I was finaly diagnosed with pd, 4 years ago, after extensive tests and care in some of the best nero hospitals in the UK, and, i must add, by some of the worlds best neurologists. There was a definate unwillingness to diagnose anything with a name untill, finally i had a scan in london, to test the levels of dopamine in my brain...which were deficient by probably 75-80%...
I now take sinimet (L-Dopa) 5 times a day, as well as high levels of codeine to kill the pain of 'end of dose ' distonia . However, i now feel i have 70% of my life back, at 42 and with 3 kids, i want to be as active as possible. Im very fortunate that i have awonderful understanding family around me who have learned quickly to interprate my ability or inability to move, swallow, fall , smile etc.. i wake up every day, greatful for what i have and am always readt to tell people who ask, that, 'im living with pd, not dying from it.
All of us who suffer with pd, will unfortunately do so differently, but by sharing the things that we experience, we will do nothing but help each other....good luck wednesday buddy
martin:wave:
hackjo
01-15-2007, 05:37 PM
Thanks mate.
I am sure it is more than FM, but if it is PD, I have probably had it since I was 21 - I can trace some of the symptoms back to then. I am 27 now and haven't changed that much in condition from then, the only differences are that I am a little slower and have less energy, with increased stiffness and shaking.
I'll bet most of what I experience is mild compared to most of you guys!
How possible is it to live with PD?
I might be jumping the gun here but I have ambitions - I want to be self-employed, make a lot of money, learn to sing, write and record music, do theatre - all things I am passionate about and have had some success in moving towards achieving already. If this turns out to be PD, can I expect to be able to do those things, albeit with time limitations imposed by physical constraints?
Whatever happens, I am ready for it - I just want to get to the bottom of it! My Mrs. is fantastic, completely supportive, non-judgemental and totally loving. A good foundation to cope with whatever is going on.
Many thanks for your comments so far.
I am sure it is more than FM, but if it is PD, I have probably had it since I was 21 - I can trace some of the symptoms back to then. I am 27 now and haven't changed that much in condition from then, the only differences are that I am a little slower and have less energy, with increased stiffness and shaking.
I'll bet most of what I experience is mild compared to most of you guys!
How possible is it to live with PD?
I might be jumping the gun here but I have ambitions - I want to be self-employed, make a lot of money, learn to sing, write and record music, do theatre - all things I am passionate about and have had some success in moving towards achieving already. If this turns out to be PD, can I expect to be able to do those things, albeit with time limitations imposed by physical constraints?
Whatever happens, I am ready for it - I just want to get to the bottom of it! My Mrs. is fantastic, completely supportive, non-judgemental and totally loving. A good foundation to cope with whatever is going on.
Many thanks for your comments so far.
hackjo
01-17-2007, 01:44 PM
Just seen the GP and he has suggested I try some muscle relaxants for a month and see if they help. If not, I will be referred to a Neuro.
If that happens, I will have to pay £120 to jump the 12 to 13 week waiting list unfortunately.
If that happens, I will have to pay £120 to jump the 12 to 13 week waiting list unfortunately.
hackjo
02-06-2007, 03:08 AM
Saw a private neurologist on Monday. He did an examination and said that he could see no abnormality aside from the tremor on my right hand side. He suggested this may be a benign essential tremor but was uncertain even of this as my symptoms are predominately one-sided.
He had no explanation for the stiffness, slowness, slurred speech, fatigue etc. He is suggesting a non-urgent brian scan and a follow-up appointment in a month or so and in the meantime I have to try some beta-blocker medication to see if this calms my nerves. (!)
So no real progress I feel, other than an acknowledgment of one symptom. It is just unfortunate that on the day I visited the consultant, I was not particularly symptomatic. The Wednesday following the appointment saw me heavily symptomtic. Sods Law!
He had no explanation for the stiffness, slowness, slurred speech, fatigue etc. He is suggesting a non-urgent brian scan and a follow-up appointment in a month or so and in the meantime I have to try some beta-blocker medication to see if this calms my nerves. (!)
So no real progress I feel, other than an acknowledgment of one symptom. It is just unfortunate that on the day I visited the consultant, I was not particularly symptomatic. The Wednesday following the appointment saw me heavily symptomtic. Sods Law!
jeremy1972
04-17-2007, 12:36 AM
i was diagnosed with pd 9 months ago a age 33...had to go through 4 neuros before findingone that would even do the testing to rule out any other problems besides PD. after 2 years and multiple test they finally gave me the diagnoses that we already new ...the symptoms you describe are identical to the ones i told all 4 drs... i can go back 6 years and remember those symptoms then , just milder.. don't give up. i was first told fibromyalgia.. then it was benign essential tremor... but they could not explain the other symptoms..drs just don't want to look at someone under 50 as being able to have PD...keep pushing the dr and good luck..your not alone .
hackjo
04-23-2007, 01:03 PM
i was diagnosed with pd 9 months ago a age 33...had to go through 4 neuros before findingone that would even do the testing to rule out any other problems besides PD. after 2 years and multiple test they finally gave me the diagnoses that we already new ...the symptoms you describe are identical to the ones i told all 4 drs... i can go back 6 years and remember those symptoms then , just milder.. don't give up. i was first told fibromyalgia.. then it was benign essential tremor... but they could not explain the other symptoms..drs just don't want to look at someone under 50 as being able to have PD...keep pushing the dr and good luck..your not alone .
I don't know what to think at the moment. My next appointment with the Neurologist is next Wednesday. The beta blockers he gave me after the last appointment did not help - I had an adverse reaction to them and the tremor did not subside. I have taken nothing for two months and I am the same as ever.
To summarise what my symptoms are for your consideration:
- Shaking right hand when hand is at rest (commonly when leaning on a desk with my hand still or holding a pen, sometimes when holding the hand still in mid-air). Doesn't seem to happen if I am extremely stressed and worried but does happen more when I am involved in conversation, thinking hard or just relaxing.
- Stiffness when walking and getting up - people keep telling me that I look like I am limping. I sometimes drag my feet and seem to be getting slower walking up stairs. I stumble occasionally.
- Dreadful fatigue - no real energy, made worse by inactivity.
- Occasional slurred speech - the words just don't come out right, I can't always speak smoothly, I feel like the letters are coming out in short spurts, sometimes feel breathless and hoarse at the same time. This is common when I am tired.
This has been the pattern since Christmas. I am still perfectly functional but obviously, these problems do slow me down and cause me some grief and irritation. Could this be hypochondria or a post-viral condition? I have been like this in increasing degrees for around 4 to 5 years now.
It would be nice to get a diagnosis and then at least treatment can be provided.
I don't know what to think at the moment. My next appointment with the Neurologist is next Wednesday. The beta blockers he gave me after the last appointment did not help - I had an adverse reaction to them and the tremor did not subside. I have taken nothing for two months and I am the same as ever.
To summarise what my symptoms are for your consideration:
- Shaking right hand when hand is at rest (commonly when leaning on a desk with my hand still or holding a pen, sometimes when holding the hand still in mid-air). Doesn't seem to happen if I am extremely stressed and worried but does happen more when I am involved in conversation, thinking hard or just relaxing.
- Stiffness when walking and getting up - people keep telling me that I look like I am limping. I sometimes drag my feet and seem to be getting slower walking up stairs. I stumble occasionally.
- Dreadful fatigue - no real energy, made worse by inactivity.
- Occasional slurred speech - the words just don't come out right, I can't always speak smoothly, I feel like the letters are coming out in short spurts, sometimes feel breathless and hoarse at the same time. This is common when I am tired.
This has been the pattern since Christmas. I am still perfectly functional but obviously, these problems do slow me down and cause me some grief and irritation. Could this be hypochondria or a post-viral condition? I have been like this in increasing degrees for around 4 to 5 years now.
It would be nice to get a diagnosis and then at least treatment can be provided.
crazygeorge
06-11-2007, 06:13 PM
i think you need to see another doctor! i had the same things you have. being tired is part of it,tremors,mood swings,walking,anxiety attacts,voice got softer,memory loss ect. i still keep active,that's good for you. don't sit around unless the tiredness overtakes. take rest stops. at times when the parkinsons is acting up, i can't stopp working. it's like you are on a high and you can't come down. it will pass. some days are good and some are bad. agent orange in the vietnam war was my downfall.
windwalkerwest
06-12-2007, 11:22 AM
Hi,
Along with the symptoms you listed, did or have you noticed early on that you have problems with your sense of smell? This was among the first symptoms with me, first things just didn't smell "quite right" or I sensed a funny smell. Later, I lost almost all my sense of smell. (have had PD for about 9 years now, started when I was about 54. Other early symptoms was the fatigue, dragging of my left foot and / or limping, loss of arm swing in left arm and arm wanted to stay bent upwards as you described. The stiffness is a real problem. I have described it as wearing a suit of armor - and my body feeling about as heavy as if I had it on. Stress does make the symptoms worse. I also had some occasional problems with speaking, couldn't get the words out right and oddly enough the left side of my tongue hurt. I had a hard time typing because my fingers wouldn't move as fast as they used to or my mind told them to. I started to bend forward at the waist when I walked and shuffled along, balance was impaired. Luckily, I do not have any tremors which I am very thankful for. About a year and a half ago I started medication. Requip did nothing for me, but when I started Sinemet I finally got relief in a few weeks or so and could walk normal, swing my arm and felt like nothing was wrong.
I suspected I had PD from reading all I could and my GP and Neurologist confirmed it.
Perhaps if you could convince your Dr. to let you try Sinemet, you could find out if it helped you. You know your body best, and the way you feel physically.
PD is something we learn to live with and do what we are able. Positive attitude and EXERCISE is so important. Read all you can about PD, it helps to know about it, takes some of the scariness out of it.
Betty
Along with the symptoms you listed, did or have you noticed early on that you have problems with your sense of smell? This was among the first symptoms with me, first things just didn't smell "quite right" or I sensed a funny smell. Later, I lost almost all my sense of smell. (have had PD for about 9 years now, started when I was about 54. Other early symptoms was the fatigue, dragging of my left foot and / or limping, loss of arm swing in left arm and arm wanted to stay bent upwards as you described. The stiffness is a real problem. I have described it as wearing a suit of armor - and my body feeling about as heavy as if I had it on. Stress does make the symptoms worse. I also had some occasional problems with speaking, couldn't get the words out right and oddly enough the left side of my tongue hurt. I had a hard time typing because my fingers wouldn't move as fast as they used to or my mind told them to. I started to bend forward at the waist when I walked and shuffled along, balance was impaired. Luckily, I do not have any tremors which I am very thankful for. About a year and a half ago I started medication. Requip did nothing for me, but when I started Sinemet I finally got relief in a few weeks or so and could walk normal, swing my arm and felt like nothing was wrong.
I suspected I had PD from reading all I could and my GP and Neurologist confirmed it.
Perhaps if you could convince your Dr. to let you try Sinemet, you could find out if it helped you. You know your body best, and the way you feel physically.
PD is something we learn to live with and do what we are able. Positive attitude and EXERCISE is so important. Read all you can about PD, it helps to know about it, takes some of the scariness out of it.
Betty
hackjo
06-12-2007, 01:14 PM
Hi all,
Thank you for your help and advice.
I saw the neurologist again two weeks ago - passed all tests. His only observations of abnormality was the tremoring right hand and arm and the fact I don't swing my right arm very well when walking.
He suggests it is Benign Essential Tremor, cause unknown. I also need to take more exercise and get fit as I am slightly overweight for my height. That would explain the lethargy and stiffness.
Both myself and my partner have accepted his diagnosis and will move forward on that basis. I do have to go back for a brain scan (MRI) at some point soon.
Thank you for your help and advice.
I saw the neurologist again two weeks ago - passed all tests. His only observations of abnormality was the tremoring right hand and arm and the fact I don't swing my right arm very well when walking.
He suggests it is Benign Essential Tremor, cause unknown. I also need to take more exercise and get fit as I am slightly overweight for my height. That would explain the lethargy and stiffness.
Both myself and my partner have accepted his diagnosis and will move forward on that basis. I do have to go back for a brain scan (MRI) at some point soon.
jeremy1972
06-19-2007, 10:25 PM
i was also told benign essential tremor, and dr could not explain the stiffness and the lack of arm movement. Stay on top of the drs and do as much research as you can. they do not want to diagnose people under 50 years old for some reason. Parkinsons has affected many people both young and old alike, and if you have any thoughts that this is what is causing your problems i suggest seeing another dr. it took me seeing 4 neuros before i could get them to run all of the tests to rule out everything else... don't give up untill you are completely satisfied with a diagnoses.
dolphfan37
07-16-2007, 08:16 PM
I am a 33 year old female who didn't notice my left hand shaking untill someone at work pointed it out. When it is at rest on my desk or doing holding something it does not shake. Usually just when i hold it out straight a head of me. Does that sound like PD symtoms?
barb70
07-22-2007, 07:45 PM
I am a 33 year old female who didn't notice my left hand shaking untill someone at work pointed it out. When it is at rest on my desk or doing holding something it does not shake. Usually just when i hold it out straight a head of me. Does that sound like PD symtoms?
Definitely see a neurologist. Good neurologists that specialize in PD are few and far between.
Definitely see a neurologist. Good neurologists that specialize in PD are few and far between.
hackjo
09-21-2007, 08:49 PM
Well my MRI came back clean so the Neurologist doesn't want to see me until next year. I had a slightly low thyroid count recently but the GP said it was so tiny that it could not cause the symptoms I have. These are still:
Shaking right hand when hand is at rest, sometimes involves whole arm and can spread to feel like the entire body is shaking on one side. Worse under performance situations.
- Stiffness when walking and getting up I sometimes drag my feet and seem to be getting slower walking up stairs. I stumble occasionally.
- Dreadful fatigue - no real energy, very sluggish
- Poor concentration
I presume the clean MRI means that I am clear of PD! But still no light at the end of the tunnel.
Shaking right hand when hand is at rest, sometimes involves whole arm and can spread to feel like the entire body is shaking on one side. Worse under performance situations.
- Stiffness when walking and getting up I sometimes drag my feet and seem to be getting slower walking up stairs. I stumble occasionally.
- Dreadful fatigue - no real energy, very sluggish
- Poor concentration
I presume the clean MRI means that I am clear of PD! But still no light at the end of the tunnel.
Fat'nBones
09-27-2007, 05:29 PM
Sounds like a lot of the things you do when you have PD. Do you take any med's? I walk slow, stiff, pains and the morning takes awhile to get going. When the med's work I am "normal" and feel normal. I take sinemet (5x day), comtan (5x day) and azilect (1 a day).
hackjo
10-04-2007, 08:55 AM
GP has tried me on Diazepam. Started it yesterday and within an hour I had complete normal function again. No tremor, no twitching or crawling skin sensations, walking quickly again, running up and down stairs - felt great.
Five hours later it wore off and the tremors, sluggishness and stiffness returned.
Interesting eh? I would think a response to Diazepam rules out P.D - is this correct?
Five hours later it wore off and the tremors, sluggishness and stiffness returned.
Interesting eh? I would think a response to Diazepam rules out P.D - is this correct?