Looking for answers!


#1

Hello, 

My name is Hope, I am new to this site, and not even sure I am in the right place, but am at my wits end with my symptoms. I have not been diagnosed with Parkinson's, only RLS, but the issues I have seem to be so much more than that. Hoping to find some information on others symptoms and see if mine fit any of them.

Let me start at the beginning, last year in 2016 I had abnormal menstrual bleeding that resulted in such low iron I had to have a blood transfusion as well as a DNC to stop the bleeding. During the excessive bleeding I also had 2-3 weeks of severe insomnia, which made my RLS get pretty bad from, obviously, lack of sleep. 

After my DNC in January of this year, about February I started to be jerked awake every 45 minutes to one hour of sleep, like clockwork. My legs shook so bad, I could not rest and then started the insomnia again. For about 2 months I did not fall sleep until 4am to 8am every morning as my body was finally so exhausted from constant leg jerks that it had exhausted itself. 

Forward to March of this year I had an EEG done, everything was normal on the EEG, there was only one spike?? as the Dr called it, so he had ruled out seizures. Keep in mind during the entire EEG my right leg ONLY flipped and flopped and jerked and kicked as I am unable to control my right leg any longer. I had a brain only MRI which came back clear. 

I was put on Levodopa and was then switched to requip once the MRI came back okay and Nuero decided it was only RLS even though I responded fine to the Levodopa. I assumed an MRI could show for Parkinson's, but am I not correct in thinking that? 


I was also diagnosed with sleep apnea though a sleep study, which I felt like once the nuero got those results decided all my issues were just that and the RLS. 

I have now started to have issues in my arms and hands. My arms and hands are numb upon waking pretty much every morning and a really strane thing is now when I am resting and I yawn my hands involuntarily close in a fist multiple times and then stop once the yawn is over! I know this sounds crazy! I am losing strength in my hands and have dropped things much more easily as of recently and much more clumbsy and off balance as well...dizzy...think I have a hold of something and I don't. 

If I lay down during the day (only take meds at night) I can feel myself half awake/asleep and my right side of body twitching and jerking. This also happened at night prior to medication. 

I apologize in advance for this lengthy post and description, but I am at a loss for what is going on with my body and feeling like my Nuero wants to chalk it up to RLS and sleep apnea. 


I have an MRI tomorrow for a cervical spine/neck MRI so we will see what that holds. 

Does anyone with Parkinson's experience jerking of limbs or is it only shaking and the "pill-roll" that is so often described? 

 

 

 

 


#2

Hi, sorry to read what a rough time you're having. I'm fairly new to this site too. Female, PD diagnosed last year, purely on symptoms. I haven't had a scan but I think from what I've read that you need something called a DAT scan for PD. I don't think it shows with MRI scan. There's a free phone number somewhere on this site for help&advice that may be of use to you.

What is RLS?


#3

Hi, Daffy

Thank you for responding,and  my apologies, RLS is restless leg syndrome. I know my post was just rambling so thank you for taking the time to read it! I had just found out recently from my own research that yes an MRI does not show anything pertaining to PD. I want to ask for the petscan, but my nuero just seems annoyed with me that I am not willing to write all of this off as RLS. I am needing to seek out a second opinion for sure! So if you are recently diagnosed may I ask if you ever have jerking that could resemble seizure like jerking or is it strictly tremors/shaking? I feel as though, because I don't have the classic case of the hand tremors and jerking is in legs first then moved to hands he is not feeling it could be PD, but he's also not feeling it could be seizure activity either! and it's definitely something!! I have just decided that the next time I have a serious spasm/convulsion/jerking whatever you want to call it, I'm going to take myself to an emergency room and tell them I am having what seems like seizures and I'm not leaving until I get some sort of testing. It feels like it is going to take years to figure this out! 

May I also ask if you had any insomnia or sleep issues prior to your diagnosis or that played a part in your symptoms and diagnosis? 

 


#4

I've just spent ages on a reply&lost it! Sorry I'll try again later, too annoyed with myself just now!


#5

Hi Hopemar,

Here goes, I'll try again.

Don't worry about your posts, we all need to get it off our chest from time to time and this forum is good for that. I haven't had any seizures at all. But everyone's experience of PD is different.

Yes I have tremors (but not everyone does). First GP I saw about it diagnosed Benign tremor (twice) and offered betablockers which I refused. Even then I suspected PD.

18 mths later I was able to see my regular GP when my left hand started refusing to do what I told it and the tremors had started in my leg too. He said PD before I was many minutes into my tale of woe. Said there was no point waiting and put me on medication and booked neurologist appointment. He has now retired, but he certainly knew his stuff. So in a way I count myself lucky there, I know some people take much longer to get diagnosed.

Other symptoms I had for several years prior to diagnosis  but never knew were PD symptoms until I read up about it are:

rigidity in left arm and leg, (in addition to the tremors there).

A very weird wobble inside from time to time that I can only liken to jelly wobbling.

Prior to these I pretty much lost my sense of smell and developed chronic constipation - despsite a good balanced diet.

insomnia, much improved now since PD nurse tweaked meds.

And very uncharacteristic but at times debilitating anxiety, On reflection this was probably the first symptom to show with me.

I know I am slower now, partly because after a couple of falls I now take care to look where I am putting my feet! and my hands do not want to work properly, especially if cold.

My low dose Medication helps with some symptoms but I am unwilling to increase dosage just yet (keeping that in reserve). Part of the battle for me is knowing what I am dealing with and developing coping strategies that I have found work for me.

Not sure about going to A&E, so many medical people do not know much about PD, especially if you are youngish. (I'm in my 60's now) Take care 


#6

Hi Hopemar,

More or less ditto to what Daffy has  said my experience was very similar to hers,with first GP I saw just smiling and telling me to come back in a month if it was no better, I finally got diagnosed in March the hardest thing has been coming to terms with the diagnosis.

but managing a lot better with the help and advice from all the lovely people on here no one better than those suffering to advise you.

Good Luck C xx


#7

oops diagnosis should have read July just a slip of the shaky hand   xx


#8

Hi Everyone,

I have done it again and can't find where to put a new post. so hopefully you will see this.

I have been on Sinemet for 5 weeks with no real improvement but some strange side effects but I have kept going as I have to give it a chance the first week My right foot swelled up and then got better but it is now up again and doesn't go down when rested.I have had twitching eye sore tongue abdominal pain feeling weak and generally unwell blurred vision, and there is no improvement in the tremors and I still can't write my name,I have also had some bladder changes. and burning sensation.

I asked my new GP before I started the meds if I could have a Dat scan to be sure and he said he had never heard of it and didn't know what I was talking about

my question to all you lovely people is do I keep going and weather the storm or do I need to speak to someone.

Clemmo x


#9

 

 

Hi Clemmo - If you have been allocated a PD nurse and/or a neurologist I should contact one of them for advice. The other option is to contact the helpline number for advice. I have had parkinsons for eight years and started on Ropinirole (which I might add does not suit everyone) but I got on well with it, then just this year I had Sinimet added to take along side the Ropinirole. Reading your post I can relate to the sore eyes, blurred vision and my tremor is slightly worse since adding Sinimet, which I will discuss when I have my appointment with my Neuro on 8th November. So in your case I think it would be best to speak to someone.

Good luck - Sheila


#10

Thanks Sheila,

 I will do that, I know its the right thing to do but am so fed up with being passed  from pillar to post and seem to be getting nowhere.

Hope you get some answers on the 8th

 

Linda x


#11

 

 

Hi Linda - yes I agree with you sometimes you feel as if you are coming up against a brick wall, but keep at it and you'll get somewhere

All the best - Sheila