Bit worried


#1

Hi everyone, I know nobody here can tell me if I have Parkinsons or not but I guess I just want to talk to people who may be in a similar situation, Im sure a lot of you can understand how Im feeling. Im almost 28 and Ive had health problems as long as I can remember (although my memory i shockingly bad!) I wont go into all of it, Ill stick with the more neurological side of things. Since I was 10 I started not being able to use my left leg sometimes, just infrequently, and then I started getting full body paralysis with dystonia when I was 18 which would last up to 3 weeks at a time, I was told it was probably conversion disorder but I was never sure. I have a worn back which hasnt been looked at for a long time and some docs said Its likely I have fibromyalgia because I have a lot of pain as well as a fair few other symptoms. Since I was 18 Ive had a little bit of trouble with swallowing and muscle spasms. About 4 years ago my legs became very weak to the point I couldnt leave the house much and I got a little bit of strength back about a year ago, my walking is very stiff and shuffly though, all my muscles are stiff and tense even if I feel relaxed, and my hamstrings and calf muscles get pulled very easily. I know when the paralysis first started I was tried on l-dopa but I dont know why or what happened because I have no memory really of most of my life. Id never worried about parkinsons before but the last 3 months or so lots of things have been going on, new symptoms, and its been a bit scary. So as I am at the moment the symptoms I have are a constant tremor in my hands that notices more when Im not using my hands and seems to get worse with stress, heat, activity or needing to eat. Theres the stiff muscles and trouble walking, dystonia (mostly partial body, like a hand or foot), trouble swallowing, I even choke on my saliva sometimes and get food stuck in my throat. I twitch quite a bit, especially my feet and legs, I have pain mostly in my back, hips and legs, I get dizzy when I stand up and Ive had trouble sleeping my whole life, I never stay asleep so its not surprising I have fatigue. Im sure other things could cause some of these but when I actually looked up parkinsons I was shocked how many symptoms I have! My GP has referred me to a neurologist but the wait might be 18 weks and I just wanna find out whats going on, the stress of worrying isnt gonna help me! Ive even looked up private doctors but its such a lot of money. What do people think? The tremor is probably the symptom bothering me most at the moment cos I feel so clumsy and it embarrasses me sometimes. Any help or advice is greatly appreciated, sorry this was so long! Thank you


#2

Hi Suzy 

Im no dr and have very little knowledge of pd as I've only been dx recently ,But I read a lot of the  posts on here and it dose sound like you have a lot of symptoms associated with pd ,you say you don't remember what happen when you were on l dopa.   You could ask your gp to look at your records to see why it was stopped  it dose sounde like you've had a lifetime of poor health and seems strange no one has got to the bottom of it yet, Have you ever had an MRI scan or similar tests ?

i know waiting for a nuro appointment is stressful but at least your on the right track to get some answers now, you should start a diary or log of your symptoms how you feel what you feel like the symptoms you get from day to day when thay start ectcetara that way you'll have a good record for the nuro dr and won't have to try to remember it all, plus it will give you something to focus on while your waiting , 

  As I say these are only my opinions and I have no medical training so don't take them as fact.

 I hope things go well for you and keep visiting the pd uk as there's a lot of good info on here,

so live well.  Cc


#3

Ok thank you =) yeah I was thinking I should keep a sort of diary actually, it would probably be useful. I had an mri when i started getting paralysed but i dont think it showed much, they didnt tell me if it did! I just want to regain a bit more control over my body again, the tremor drives me nuts! Im hoping to get a cancellation for the neuro doc because i work in the hospital but who knows what the wait will be! Thanks again x


#4

Hello Suzy

It might be worth asking for a DAT scan, the diary is a really good idea. You cerrtainly have a lot of the problems that come with Parkinsons.

best of luck

Mosie


#5

hi

i think 10 yrs old would be close to  record for early onset pd though Matt Eagles beats it by 2 years.

look him up, it might be useful.

best wishes

t


#6

Ok thank you Mosie and turnip, im not sure if the problems i had when I was really young are linked to hoe i feel now or not, its so hard to know what my body is doing! 


#7

Hi, Suzynola7 --

I'm less knowledgeable about PD than turnip, but you certainly do have a number of typical symptoms.  When you see a neurologist, I wouldn't be surprised if something like Mirapex (Pramipexole) were prescribed.  In the U.S. it is often used for restless leg syndrome as well as PD.  Just getting a diagnosis of any sort will bring some relief, I'm sure.  Not knowing is the worst of conditions to be in for very long.

Best of luck in getting an appointment soon!

J


#8
Thank you J, yeah the not knowing drives me mad! Im a bit worried the neurologist wont take me seriously, cos im young I just get dismissed or everything is put down to anxiety even though im not having trouble with anxiety. I just hope I get a cancellation soon!

#9

Why is it that the medical world has such a prejudiced attitude toward the young?  Early onset Parkinson's is certainly a possibility.  When my son was young, he had abdominal migraines, something pretty rare.  But before we got an accurate diagnosis, we met half a dozen doctors at least who said the pain was in his imagination or that he was faking it in order to avoid school.  Fortunately, I knew my son and believed him.  I refused to waste time with a child psychologist, as one doctor suggested.  And at long last, the pediatricians at a children's hospital diagnosed him correctly.

One of the smartest doctors I have known used to say that there is a fallacy in the world of medicine that many doctors fall into:  If you cannot diagnose it, blame the patient.  Too often true . . .

Again, best wishes for a cancellation soon and an accurate assessment of your condition.    J


#10

Thanks very much, yeah Ive hardly ever been treated well by doctors and often they dont even want to try and work out whats wrong, it makes me feel like Im crazy but I know Im not!


#11

Hello Suzynola7

I can't quite get my brain in gear today so I could sound a bit odd

I don't know if your doctors already checked for Wilson's disease. I know there's lots of other basal ganglia conditions it might be.  I'm bringing up Wilson's  because it's something there's a good treatment for that can often stop it getting any worse, so it's worth getting tested.

From (dodgy) memory, I think it often begins in children and young adults but can be later onset. The recommendations are that everyone with any kind of movement disorder like parkinsonism, tics or dystonia, that starts before age 40, should be tested for Wilson's.

It's often misdiagnosed for years.  It shows up in all kinds of ways. None of the tests are completely accurate so they should use a combination of neurological signs and several tests to work it out. Some people reckon it's worth getting your samples sent to labs that are used to doing these tests and getting the eye tests done by people that are experienced.

I hope the next Dr is kind and respectful, takes you seriously and commits to working out what is wrong. I was misdiagnosed since I was a kid too. Glad you have some good people on your side.

all best

rhubarb


#12

You dont sound odd at all! Thanks for your reply rhubarb =) ive only heard of wilsons on the tv show Scrubs hehe, and in that the girl had a copper ring in her eyes, i cant see that with me, ill look into it though. Sorry you were misdiagnosed too, what did docs think you had? Grr i cant move my legs and one arm today, im fed up. My new boyfriend who seemed so caring and understanding at first is being funny with me and not dealing well with my health, its all too much at the mo


#13

Sorry it's a crappy day with you. I hope your boyfriend will get his head round it.

I was thinking about your long wait -  if they haven't tested for Wilson's yet it could be a reasonable argument for your appointment with the neuro being seen as urgent. It'd be just as urgent to get it checked out quickly as when someone finds a breast lump.  But arguing for that might not be easy if they're finding it comfier to believe you have psychogenic problems, than to face the feeling of being out of their depth.

With the eye thing I think if it's obvious, you can go in and say look!! but it doesn't show up clear in everyone and they use this slit lamp thingy to check

I had a crazy list of diagnoses and suggested diagnoses for 20 years before they agreed with me that it's physically caused, neurological, progressive and includes parkinsonsism. But I haven't got a final answer yet.

I hope today gets better for you somehow

take good care

rhubarb

 


#14

Thank you for your kind words rhubarb, they are much appreciated. Im so annoyed that things like relationship problems make my symptoms worse, I dont handle stress at all well. I think my boyfriend is going to break up with me and I dont know why, he wants to meet me in a pub later and wont tell me whats going on, this spells doom to me! When I said I couldnt hardly walk he said 'this is what im talking about' which i didnt really understand so i explained i cant help what my body does and obviously i dont want it to be this way and then he said the problem isnt my health...Im so confused! He said before he was struggling to deal with my problems and that I can be negative but he wouldnt be half as positive as I am if he felt like i do! I cant believe somebody couldnt even deal with me for 2 months! My ex was verbally abusive and used to take the mick out of me for being disabled and said he didnt want a future with me because I had 'bad genes' even though we were together 5 years. I know thats extreme but I feel my health is going to stop anyone ever loving me =( nothing ever seems to go right for me, I cant cope with it all


#15

Hello Suzynola

                               Your ex is a prat and if your present boyfriend intends ending your relationship well all I can say he cannot possibly love you the way you deserve to be loved, you are a very beautiful young lady and you will quickly find Mr Right, I find it amazing that Husbands Wives Partners walk out when the person they vowed to stand by in sickness and health do simply that, they walk, leaving their spouse crushed and left to fend for themselves and dont allow parky to stop you finding someone who will treat you right there are still true Gentlemen out there who care and cherish you if you have parky and your symptoms seem to point in that direction,there are many drugs tha can help you back to %95-97 you are young and strong and you must prepare for the long haul and at times you will be saying to yourself you cant go on, well I am here to tell you Suzynola you can go on, you are intelligent beautiful  "I know I know I have already said she is Beautiful but she is" that wasnt for you Suzy I am just pointing it out to my fellow 4rummers,"  keep in touch with us and inform the forum as it weir,, nope thats a big concrete thing holding back a river, weird,  nope although you could say that about me., were  yes yes  were as it were, yes inform the forum, of your progress you have many friends here now take advantage of that fact, also a bottomless pit of very usefull info all free Suzy.

                                     I hope all goes well for you Suzy

                                                      Fed


#16

 

This 'Wilson's' disease, i was tested for that, it was a blood test much like any other blood test, i didn't have a lamp pointed in my eyes.

As i understood it copper molecules in the brain don't attach too other molecules that process them through the Blood hence a build up of copper which the body can't deal with, i Also understand it's much much rarer than PD. 1 in 30 thousand compared too 1 in 500 PD, it is however quite treatable.

Hope the rest works out for you!!,.


#17

Thank you very much Fed =) Yeah I understand now my ex was indeed a prat but it hasnt stopped me feeling bad about myself, Im waiting for counselling, my health took a lot of my self esteem and he took the rest. I was scared to even try and be with someone new and I was totally open with him about everything, all my problems so he could decide if he wanted to deal with it and he would say he would be there for me whatever happened, he was even saying this 3 days ago! Which is why Im so confused now, I feel like hes punishing me but not just telling me what the problem is, my health problems are my downside, I know that, but I have a lot to offer, I probably am too good to boyfriends because I try and overcompensate for having bad health. I find it hard to believe anyone will want to be with me with all my issues and it scares me a bit, I really want a future with someone and to be loved, Ive not had that in such a long time, I dont want my health to take that away from me =( Im going to meet him in about an hour (stupid when  can barely walk), im trying to prepare myself that its going to end but Ill still be really upset if it does end. He said earlier in a text hes realised some stuff about us and needs to talk to me about it...thats all I know! Thanks for your support, I know Im going off topic a bit! And thank you sea angler =)


#18

Suzynola7, you're in a bad place now and probably don't have your usual perspective.  When I am seriously ill, I can't see past the illness; or when I'm going through an emotional difficulty, I can't see ahead and know that I'll ever feel good again.  But you WILL go on to better times.  Please believe that when you get through the pain of a break-up, you're free for the better relationship that is waiting for you in the future.  Fed is right: we can tell that you are intelligent; your photo shows youth and beauty; you just need to regain confidence, which I think you will do once you get the medical attention you need.  And one thing I noticed about your description of this boyfriend and an impending break-up:  although you said you want to be loved (as we all do), you never said you love this young man.  He is not the one for you, really, is he?  As Fed said, there are true gentlemen out there, men of more integrity and maturity than this guy seems to possess.  I lived and loved with one for more than forty years!  Following his death, I have no need of a second love; true love satisfies forever.

Keep in touch.  We're thinking of you in these trying days.

J


#19

I can understand Some of your worries Suzy.

When i started a relationship with my GF 6 yr's ago she was ill at the time, and had some of the same worries you've outlined in your post, she steadily became more ill, i became her Care'r as well as her fella, I used too sort out her bills for her, food, cleaning/housework, i was like a 'butler' lol,  as well as holding down a job,but we don't live together, we're 40 miles apart. 

And then i became ill myself, i am less able, i love her and love doing all i do for her, but sometimes feel as if i'm failing her as i never expected too fall ill myself. I don't spose all bloke's are the same and it can seem quite daunting.

 i spose it is the old saying 'if its meant too be it wont pass you by'.


#20

Thank you J, well we havent been together very long, maybe I shouldnt care so much, but after finally leaving my horrid ex I was so excited about someone being so nice to me and we have a great time together and I do like him a lot. I just cant help but feel theres something wrong with me cos I must always get treated badly for a reason, and my health is the only real bad thing I can think of. I think a lot of it probably is immaturity, hes only 23 but he seemed more mature than that until now. Thanks again sea angler, its nice to hear some men dont mind caring for their partners. I dont even need caring for as such, I can get out and do stuff, I try to do as much as I can when I can, I just need someone who wont freak out when I have a bad patch!