Hello first time posting
Long drawn out story but I’ll try and condense. I’m 54 years old and around 4 years ago I started to notice weird symptoms, idxekecticy shocks, tingling, I was utterly exhausted, my legs, arms body would feel as though I’d weighted bags on it so I’d find I felt like I was dragging my legs, I started to find steps hard work and tiring, my arms felt heavy, I felt really stiff as though my joints, we’re swollen but they weren’t, my sleep was terrible awful chronic insomnia caused in part by pains, my memory started to go I’d loose words be forgetful, I fell over hit the deck no Idea why, I went to my GP was poo pood but over the past few years, I’ve had numerous blood, tests all clear, xrays to see if I’d joint issues, nothing showed up, mri of brain which showed multiple lesions, covid hit and things took a back seat. Things have slowly got worse, I can’t keep up with my husband anymore walking, I’m very stiff when I’ve been sitting and bend slightly over till I get going, I’ve noticed my right arm o longer swings, then these past two weeks I’ve had intermittent twitching in my right arm and then my thigh, this is, new. Also I wake up when I’m lucky enough to sleep feeling like my body is shaking trembling but it’s internal it’s odd.
Two years of trying to see a neurologist on nhs to just keep getting bounced back. Saw a nuro surgeon to rule out issues, of the spine causing all this and was tod no physical cause, but was told I had long track signal issues and needed to be seen by a neurologist urgently… still couldnt get a gp referral approved. Anyway I’m seeing a, neurologist privately on Friday I’m just so fed up. I know something isn’t right I just don’t feel like me anymore. I also find it hard when out and about I feel agitated and panicky again this isn’t like me.
Is it parkinsons god knows. Hopefully have answers soon
Hi Paula54,
Welcome to our community forum. You are likely to hear from members who have Parkinson’s who may be able to compare symptoms with you, but we of course defer to your doctors, etc, with respect to any kind of diagnosis. There are many symptoms Parkinson’s shares in common with other diagnoses, making it difficult to be sure in many cases until significant testing is done. You may find this section of our website of value: Do I have Parkinson's? | Parkinson's UK. You are also welcome to call our free and confidential helpline, on 0808 800 0303, as they offer a wealth of resources and can in fact help you to locate care in your area. We understand that knowing for sure removes uncertainty and that can bring some comfort, and above all this community is here to share experiences and advice and is a wonderful reminder that you are not alone.
Wishing you the best along with our warmest welcome,
Jason
Forum Moderator
Hi Paula,
I’m sorry to hear you’re having a tough time with your symptoms.
Obviously I can’t say whether or not you have PD, but you have a couple of symptoms I also have. I was diagnosed in May of this year.
I have also had the internal shaking a couple of times. My whole body seems to shake internally with no visible sign of it externally. I also lost the swing in my right arm about 4 years ago.
I have had the twitching in my right leg, but I believe this to be caused by stress and once you’re properly diagnosed and know what the actual problem is, you’ll find this may go.
I do have problems remembering some words, but they always come to me after a while.
I was also told by a GP that there was nothing wrong with me. I, like you, saw a private consultant who diagnosed PD.
Good luck with to our appointment. I hope you get some answers.
I’ve a list as long as my arm because I’ve been keeping a, diary of what’s been going on.
One of the reasons I don’t sleep is due to having the urge to stretch out my legs it’s odd kinda like a, flexing thing I’ve to do. Then I feel like my limbs pulsate. It’s, hard to describe. I used to be really active full of energy but these past few years I’m slower due to the stiffness and limbs, feeling heavy and I get so tired and find walking hard but doable but boy do I pay for it later.
I’ve also got constant high pitched rininging in my head and I’ve also got issues, with swollowing, it’s, as though my throat is paralised for a, split second, and I also stop breathing and can’t Inhale it’s scarey and weird. Im constantly stopping mid sentence no idea what I’m saying. I’ve written everything down to take with me to the appointment.
Well, if you do have PD, the good news is that once you’re diagnosed, you get prescribed drugs which may well reduce your symptoms.
For me they’ve been brilliant. Most of my symptoms have gone and I feel physically better than I have done in a long while. Of course there is no cure, so the drugs only mask the symptoms. For me, it took several weeks to get the full benefit but I received some benefit after a few days. Of course everyone is different, so what works for me may not work for someone else.
Good luck with your appointment. At least you should find out what the problem is and once you know that, you and the doctors can work towards improving your quality of life.
Thankyou
Just wish I’d not had to pay 240 pound to see a neurologist but I’m fed up of going to the GP to get nowhere, you start to doubt yourself you’re made feel like it’s, all in you’re head.
I’ve balance issues, too I stumble a, lot and I’m always dropping things it’s, like I’ve gloves on my hands, fumbling.Oh its a right saga, plus, throw in the headaches and on off depression…
Fingers x I get answers and can start to get help.
Hi Paula54,
Wow you certainly have been through the wringer, I’m so sorry.
The symptoms you have seem to have aspects of a possible number of problems.
It may be that one is feeding off the other which is feeding off the other which is …, and that is why the symptoms are so disparate.
I really hope the neuro can let you know what it is or at least let you know it isn’t PD or something related.
That will take you back to step one, but at least you will be able to cross a brain problem off your list.
I know what I am saying doesn’t help much but the only way you are going to get better is by eliminating what it isn’t one at a time.
Well we’ve eliminated blood issues, thyroid, lack of iron, coatasone vit d, liver kidneys you name it I’ve been tested for it. Ive had mris of my whole spine, nothing showed up. Xrays of hips, knees nothing, Had a, mri of brain lesions, but never got to route of it covid kicked in. Seen a nurologist 3 years ago thinking could this be ms told no and was told and I kid you not you’re not dead so be happy with that. Of course things have over the past 3 years got slowly worse more impact on my life so I started yet again contacting the GP, more bloods more tests. I Insited on seeing msk team he ruled out any issues with my spine but like I said picked up on a cns issue and here I am.
One of the most scarey things that happened was I was going to my hair dressers walking distance of ten mins been going for 30 years suddenly I literally didn’t know where I was or how to get to the hair dressers I just froze and was panicking be cause I literally didn’t know how to get there. It passed after approx 5 mins but it shook my confidence. I can have money in my hands I know it’s money but ive no idea what the coins are.
My kids, are grown up and left home I don’t work I’m a stay home housewife so I’ve no stress in my life, not even a mortgage so I get fed up when friends say I’m stressed I’m menapausel.Youre constantly dismissed as a neurotic woman least that’s how it feels.
my only contribution here is that it may be wise to ask what the neurologist’s real speciality is. in my case, i saw one neurologist for about 5 years (roughly 1 visit per year) and he did not diagnose parkinson’s until it was so obvious a 10-year-old could diagnose it. i even told him multiple times that people i knew kept saying it looked like parkinson’s. he reassured me that i did not have anything serious like MS, ALS, Parkinson’s, etc. he was fairly certain i had “functional neurologic disorder” (FND). i discovered later that he was primarily an MS researcher. it seems that knowing a lot about MS left plenty of space for lots of myths about parkinson’s to fill his mind. thankfully i’m seeing an actual parkinson’s specialist now.
anyway, don’t assume that just because you’re seeing a neurologist that they know much about parkinson’s!
“… I’ve also got constant high pitched rininging in my head…”
This is a symptom of low intracranial pressure. Along with all the other symptoms you mention, your case reminds me very much of mine. I was diagnosed with Parkinson’s and Postural Instability and then it turned out that I had a spinal CSF leak. I got a 2nd opinion from a neurologist who specialises in unexplained symptoms.
The low pitched ringing drives me mad, plus I get more headaches and kneck pain than I ever had. Sometimes I feel like I could drill a hole in my skull and it would relief the pressure.
Roll on tommorrow though I’m aware I might not get immediate answers.
Saw the neurologist, he was brilliant. Looked at my mri scan of head explained it was normal that he’s no idea why the report suggested otherwise. He then did numerous other tests, had me walking, hit me with hammers alsorts. We chatted and he read my war and peace list of symptoms.
It’s not ms, it isn’t parkinsons. He said my numb leg was a, trapped nerve, my ringing in ears was tinnitus. That all my other issues, we’re down to severe stress. It all kicked of when I list my sister to brain cancer it was a, terrible time during covid lock down, then my husband was on furlough, then he had a, serious eye injury and lost his sight in one eye, then our son is autistic and that is, so stressful, he’s moved into supportive living now but it’s, had it’s problems too. He said I’ve got very real physical symptoms but they’re all due to anxiety disorder. He explained to me and my husband that simply saying stop stressing doesn’t stop it it’s beyond my Controll, I do have severe panic attacks… anyway he’s referring me on to have physco logical help to get me back to some sort of normal before it can’t be reversed or I have a breakdown or more serious physical symptoms.
Hi Paula,
Overall good news. Anxiety and stress are not pleasant but they can be resolved.
It sounds like money well spent seeing this consultant. I expect you’re relieved.
It’s good news you’ve been referred and you’re now on the right path.
Good luck and I hope you are back to ‘normal’ soon.
Thankyou
I had the best two nights, sleep in over two years since I saw him. I’ll get back on a, even keel eventually just knowing I’m not seriously ill has helped.
I’m so glad you saw someone who actually cared to look into all the symptoms, these people are few and far between.
And yes, stress is a silent killer that is often overlooked.
When we stress out badly, we actually cannot see the wood for the trees any longer and it seems as if we are walking down a road and leaving all sunshine behind as we head into that abyss.
As the Neuro said, most of those aspects you actually could not possibly have forseen and could do nothing about, so why stress about them.
I know that sounds glib and is easy to say, however it is true, rather concentrate on the things you can actually do something about and change.
You really, really do need to see someone to help get over this.
Someone you can just talk to and if necessary, scream and shout.
What might also help, and I have suggested it a few times, is to get a punching ball and everytime you feel like it, go and punch it and kick it and bite it and basically whatever makes you feel better.
But one of the most important things, is, if you feel like crying., please do. It is also a wonderful stress reliever.
And it will, I promise.
