confused !!!

New diagnosis and before diagnosis
1

Hi I’m just hoping for some information, I will try to cut a long story short, I have been suffering with symptons that link to m s, my Neuro was convinced I had m s, but after all tests came back clear m r I, v e p, l p, he sent me to a movement disorder clinic, the Neuro done his examination and said I don’t have parkinsons but I’m showing some symptons which may develops into parkinsons in the future, which is exactly what my other Neuro said sbout m s, that although the tests are clear I’m showing clear signs of it and that some people wait years for it to actually show in test results,

I’m so frustrated by it all first it’s this then it’s not, then it could be that then it’s not, it’s driving me crazy, the movement disorder Neuro says it’s a blockage in my brain that sends the Signals to my body to tell it what to do and because it’s blocked my body won’t do what I’m telling it, I’ve also been registered partially sighted as a part of all my symptons.

The Neuro is now going to send me to a physiotherapist and also have physio because he said I’m sitting in front of him and moving like a 80 year old women ( I’m 49), I have to also have more appointments with him.

I really didn’t understand what this physiotherapist was all about so I looked it up, and I wish I hadn’t cos now I think he thinks I’m making this all up threads, that’s terrible I’m no way making this up and no way it’s all in my head, I just can’t believe it I really can’t it’s so heart breaking that your doctor’s are not believing you .well that’s how it’s made me feel since reading up about it,

It’s crazy it really is, how do I make up my vision problems when I’ve been registered partially slighted, surely I can’t imagine that can I, and having to have your daughter care for you, having to have sensory people from the sensory department com and assess your home and adapt it, and also to have a occupational therapist come and adapt your home, and may be have to move because my home can not be adapted to my needs, surely I’ve not imagined all that as well have I.

Oh sorry I got carried away there I do apologise, but I also see a doctor in the pain clinic who has said I have damage to my central nervous system. When I asked the Neuro if that was causing all ny symptons he said most probably but the nervous system is very difficult to put a stamp on actually what is wrong until it shows it’s head in test results until then we have to do something about your mobility.

So I don’t understand what a physcotherapist can actually do to help I’m confused there, I hope I’m not going crazy and imagining all this surely not !!!’ Can anyone help as to why I’m being sent here or how they can actually help me,

Thank you so sorry for the drawn out message I just do not understand why I have to go to see this person.

Thanks again for taking the time to read this .

New user xx

2

Sorry it’s a psychotherapist and physiotherapist I have to see, the predictive text at beginning of letter kept saying physiotherapist instead of psychotherapist.

3

Hi there, you are having an awful time of it, sending you hugs ((((())))),

I am in the same boat as you, have been round in circles seeing different specialists, being told different things for about 18 months and now stand between a dx of MS or FND, Most likely FND but just waiting for some test results to rule MS out,

My neuro gave me this website address to look at neurosymptoms.org.uk I recommend you take a look, its a really good site and you will see that the symptoms you are having are in no way made up, they are completly real and gives lots of info about how/why you may have this condition, which is fundamentaly a disorder of the nervous system. If you visit the site read other peoples stories, i personally found I could relate to everything they are saying.

It does seem that some health professionals dont understand or know enough about this illness and I am concerned going forward how I will be treated once my neuro starts referring me for treatment.

But I guess the thing to hang onto here is that at the moment you don’t have parkinsons or ms and FND, if people get the right treatment, can be cured or at least very much improved which can only be a good thing.

You are not alone, lots of people here to support you. Good luck. xxx

4

Unfortunately, unless something shows up, they can’t diagnose, and that can take time. The specialists haven’t discharged you, which is a good indication that they don’t think you’re imagining your symptoms (believe me, they are very pressed for time and wouldn’t want to see you again if they didn’t think there was something going on).

When I was diagnosed I was offered counselling (which I accepted). Diagnosis can be quite traumatic for some people, and it gave me a chance to get things off my chest. I know you haven’t been diagnosed yet, but I don’t think being referred for psychotherapy in any way implies that you’re imagining things, and in fact is just another form of support. Why don’t you give it a go? If you don’t find it helpful, you can always ask to be discharged.

In the grand scheme of things, neurological conditions are fairly rare,. Sadly, as Bunny has said, GPs have very little training in them, and symptoms are too easily assigned to depression/anxiety when basic tests show nothing. I’m sure that there are many people on the forums who have experienced this (I know I have).

Mags

5

Thank you so much for your replies both of you, it’s just gut wrenching when your made to feel your making all this up, when I have no reason to I don’t want to be like this it’s no fun, some days I can walk other days it very difficult, arm movement, hand movements very restricted, as I also have osteoarthritis in my spine, which causes a lot of pain, the doctor in the pain clinic says I have damage to my central nervous system so why does this other Neuro just shrug that off,one minute they say they have a diagnosis then next thing they don’t, it’s not fair that they should be allowed to make people feel like this it just adds to the stress of things it don’t help, I’m on quite a bit of meds to surely they wouldn’t give me all that if they thought I’m imagining my problems, he also told me my ampitriptyline needs to be raised, oh I don’t no I’m just so fed up with it all now, m s has still not been ruled out as one Neuro says then the other says to see physcotheerapist, I just don’t understand I really don’t…it’s crazy…

I’m fed up and down now, I thought doctor’s were ment to help us. Not make us feel worse.

I would have thought damage to c n s would actually cause my symptons which is what the doctor told me at pain clinic.

I am sorry to ramble on like this I’m just going round in circles sorry…

6

Hi and welcome,

From what I gather on this site the majority of long standing people in limbo tend to be people in their late 40s to 50s like us!. I am 49 too and am about to see a third neurologist in 3 years! My situation is not the same as yours as I do have a lesion on my spinal cord which is definiately the cause of my symptoms. The problem is finding a cause for it. I did have an attack in 2008 which I believe caused the lesion and because I dont satisfy the criteria for MS then I dont get treatment ie DMDs.

Roll on answers! Neurology is a guessing game / or process of elimination.

Moyna xxx

7

Thanks again for the replies, I had an episode 2 weeks back where I was numb down the left side of my face it’s not nice but I could not even control my dribble, went to doctor’s he was concerned as I could only blow one side out of my cheeks, also eye was week he said if I didn’t have all the Neuro problems I’m having he would treat me as a stroke patient he was unsure what to do so he rang round 3 hospitals asking for advice he wanted me to be admitted to charring cross neuro debt but they only have six beds none were available, so the specialist said because I had an appointment a week later at that hospital to see how I go to then , well that’s was the appointment to check for parkinsons he done his little tests on me told me I only had 3 symptons showing and I had to have 5 for a diagnoses, and that it might be the onset of it and time will tell, I tried to explain what happens to me with spasms the fatigue, dizziness, loss of eye sight one day my leg will work next it won’t the same with my arms and the tremors, and also I have to go to speech therapist because I keep getting a choking feeling, he wasn’t interested in any of this, just asked if I was depressed how was my sleep Patten how’s my eating habits and then said were get you some physio and see a psychotherapists, and that I would be back to see him again as well, he had no interest in what the specialist said about my cns or anything else.

On my very first m r I there was white spots and the Neuro said that could be age related so I don’t no what’s going on, all I no is I feel the pain I get I don’t imagine it, all he said is that the Signals are being blocked and that we have to 're open them with positive thinking and he would have me running a marathon by the end of it… goodness…

Sorry again for the very long message I just don’t no where else to go.

Xx

8

The psychotherapist isnt necessarily there because they think you are making it up. I had therapy for 18 months (once every 2 months) to help me understand my ME, learn how it affects me and to allow myself techniques that help. Before I had the therapy I would flog myself to death trying to carry on as normal, making myself repeatedly very ill because I thought I could push through it, but it took me 18 months to understand I have to change the way I live, and it has really helped/ She got me to understand pain and got me better pain treatment from the GP, and all round has been such a help as she even wrote to my employer telling them to treat me according to the equality act.

Dont assume it is a critisism of you, look on it as an opportunity xx

9

Oh thank you so much deadchick07 that’s has helped a lot may be I am jumping to conclusions, it’s just I have read things and was made to feel I was a fraud of sorts, maybe I should look on the positive side, I don’t mean to be a grump it just really stresses me when people make you feel like that.

But thanks you have been very helpful

10

I really feel for you, I think many people on here are as you say “going round in circles”. I would imagine they will do another MRI if your symptoms worsen which may show a change. I agree with deadchick that therapy may help even if it is just to talk about things. I had a 5 month period of depression several years ago ( which I now think was poss neuro issue) and I had therapy which helped. They don’t act as though it’s imagined, but teach your brain to work in a different way which helps reduce stress. In your case, reducing stress may help alleviate your symptoms and pain? I’m not diagnosed and they will not give me an MRI because my symptoms are “too random” and am now on Pregabalin for symptoms. I find it odd that they don’t want to find out the cause, so am in pain and limbo like a lot of people on here I hope things get better for you with regard to treatment, sending you virtual hugs xx PG