Saturday, 19 March 2016

Neurology and bone density update

Update since 15 December 2015

Soon after my appointment I received a report from the eye specialist, along with 2 new appointments, one for eye movement tests in April and a follow-up appointment in June with eye specialist.


I had my full blood tests via my new GP which came back normal for all things except slightly higher than normal for Cholesterol and Sugar.
She asked I attend a days training 'Walking away from Diabetic' , which i did and recognised I need to loose weight.
She provided them with my Cholesterol score which was,,,,,,,,,,
HbA1c   43mmol

I have tried to walk more by using my poles I am able to walk further and faster.
I also swim.

I also went for bone density scan which says :-


Lumbar Spine L2-L4
Bone mineral density (g/cm2) = 1.342  +/- 0.01
T Score =1.0  Z Score = 0.9

Mean L & R Total Femur
Bone mineral density (g/cm2) = 0.998 +/- 0.01
T Score = 0.0  Z Score = -0.1


This patient is considered to have normal bone density
according to the World Health Organisation guidelines.
Please refer to full data set on PACS.

On Monday 14 March I attended my appointment with the Neurologist

The consultant I normally see was there, but I was asked into his senior consultants office,, whom is the named consultant on my files.

She asked questions on what was my problem. I said how I have difficulty walking as knees swollen and balance not good and back weak.

she noted I didn't walk straight so asked me to walk. Said I was OK. which I was I explained I feel robotic in walking and poles help. Because they help me to balance and I don't trip. and can also walk faster; as when I walk fast I become less coordinated and feel like my feet are going faster than my brain. And that I break when i fall. I told her i broke both wrists last year, just from falling but I had bone density test and they show to be normal.

She asked about my back problem in relation to walking. I told her it gives way can become like jelly, from like my ribs downwards and it becomes hard to hold myself up.
She asked was there pain, to which I said no, not really, only if i was to push myself when i collapse. People don't seem to understand no pain, but it is more like I'm paralysed.
she said she will arrange a MRI scan for the whole of my spine.

I said I see eye specialist, who now say my double vision is most likely neurologically caused, and not Thyroid eye disease as they had been saying for past couple of years; although the first eye specialist, 2 years ago,  had noted my left eye muscle was too tight, ( I didn't see him again)
Now they say not likely TED as no other symptom, like protruding eyes, redness of lids, puffy eyes, and pain. all of which I had previously in 2019,along with double vision but all symptoms went when I treated myself, so I was discharged in 2010.

I have now been given appointment for eye movement test, April.

I informed her I had changed my GP and they had given me a full blood test, which showed all to be normal, except my cholestral and sugar to be slightly higher than normal.
They arranged for me to go on day training, 'walking away from diabetic'. where I recognised I need to loose weight.

Throughout the appointment I was jolting, where my arms and legs move involuntary.
She asked what was this tick, I said I don't know.
She asked when it first began. I said after surgery in 1998, but not bad. becomes worse when tired and that I was tired now. (12 noon).

I added in 2009 it became more noticeable and has got worse in the last couple of years.
She asked when I last had a brain scan, I said I think 2 years ago (I see now it was 27 January 15)
She looked at her screen and said I will arrange for another brain MRI scan.

She asked did I have mood swings. I told her yes, I can be fine and then for no reason become tearful.

She said there are no more tests she can do.
I asked about diagnosis and explained I needed in order to gain appropriate housing, as I had an OT assessment, who said I needed but the housing services say I can't have until i have a diagnosis.
The Dr said she can't give a diagnosis yet, but they could write to her and she would explain.

I offered her what I had previously prepared, a list of all the MS symptoms and how I experienced each symptom.
She glanced at it and gave me back. But I asked did she not want to keep it. She said yes, she would read later if she could have the copy. So I left it with her.

Here it is

    Signs & symptoms(taken from website)

        Early signs of MS
       1,  Balance, walking and dizziness  - yes
       2, Bladder  - yes
       3, Bowel    -yes (this last 2 weeks constipation)
       4, Eyes and sight   -yes
       5. Fatigue   - yes
       6, Memory and thinking   -yes
       7, Mental health   -yes
       8, Pain   - yes
       9, Sexual problems   -yes
      10, Spasms and stiffness   - yes
      11, Speech   -yes
      12, Swallowing   -no
      13, Tremor  - yes

updating all on my current situation.
 My Signs & symptoms of MS

1, Balance, walking and dizziness
yes I have poor balance, and don't tend to walk straight, and my movements can become quite robotic especially when tired.
I can't stand on right leg for more than a few seconds most of the time, I practice regularly but still sometimes harder than others, Sometimes my legs go faster than my brain and its uncoordinated.

If i try to look up I can be dizzy and laying down,sometimes.
Also as I walk i lack spacial awareness of where my feet are so knock into things.
I walk slow and muscles can tire fast and inclines of any type are a struggle and strain on my lower back; which I previously have had a discectomy on L5/S1.  I find I lean with my pelvis tilted forwards as I walk.
I therefore now often use a walking pole(s) as advised by my neurologist; which enable me to walk faster, with longer strides. They help with balance and support my back enabling me to walk further too.
They also help prevent me from tripping over, which without I can trip over a match stick, which last summer (2015) resulted in both my wrists being broken from 2 falls on the pavement.
Recent bone density scans showed my bone density to be normal.

 2, Bladder
Sometimes I need to urinate frequently, yet don't have a full bladder.  I often have small amounts of urine leakage even when I don't have a full bladder, which sometimes happens if I cough.
When my back collapses , I becoming semi- paralysed and don't pass any urine.

 3,  Bowel
Not a problem last 2 weeks become constipated
 4, Eyes and sight
Double vision, which I am told by eye specialist the muscle controlling my left eye is too tight, also my vision varies and changes throughout the day.I am due to have tests on my eye movements in April 2016.
Previously they diagnosed Thyroid eye disease, as had previously (2010) plus had unstable thyroid that resulted in me being prescribed Thyroxine 100mgs a day.

 5, Fatigue
I can become tired after doing very little, even wake up tired. Other times I don't experience tiredness, then tiredness hits and can last for days.
Sometimes the tiredness can just be in my brain, not in my body, then my head feels thick in like top and front and sides....and concentration is too hard to focus to work or think, I can plod and go with a slow flow, to read becomes extremely hard, and I struggle to have single vision,,,or other times I need to lay down and rest or fall to sleep for a few hours ranging from 1-3 in the day, even after sleeping 8 hours at night.
Other times my body tires very fast after minimal activity , like having a shower, and can have me exhausted for the rest of the day, other times a rest or sleep can restore me ,but not always.
It can be hard to sit up sometimes, like my torsal has no strength. My muscle can tire very fast.
body vibrates and jumps/jolts more, and after big tiredness days each end with feeling like soaring inside,,,as is something is going very fast,,,feels like sitting on a fridge. Otherwise rigidity ,like tight clenching , stiff. Have to tell myself to relax. Then body jolts.
Tested blood for thyroid cause of tiredness but was within normal range.

I often feel very hot,,and my head sweats, in a rush....

i see i get like a battery life,,and have to work with that in mind, that i will use up the energy and need rest before can do things,,i work slowly in most things i do.

 6, Memory and thinking
I get cloudiness in my head sometimes and find it hard to focus, concentrate on tasks. reading can be hard in these times, like the words don't go in , so I need to read a sentence several times.

Often someone may say something to do, but I forget what they have said and struggle to retrieve the information.

I also sometimes stutter to get a word out.

Regarding multi tasking, I find I start things and then forget to finish, e.g. making a drink, I may prepare for then go on to do another task whilst kettle boils and forget that I was making a drink. I have many tasks on the go, but need to go through things in a sort of systematic way to make sure I cover all tasks I am to do.
I have 2 diary's and use lists of things to do, Or I wouldn't know what I am doing, like my awareness of seems absent.

Sometimes I put off tasks until my brain is working better, as trying to do task that require concentration when my head feels scrambled or thick can become very frustrating and feel overwhelming to do what is otherwise a relatively simple thing, like reading some information.

7, Mental health
I can become frustrated about not being able to concentrate, so everything can take longer and this  sometimes has me feeling inadequate and inferior, or shameful.
I can be tearful for short periods throughout the day with no rational for.

sometimes even though my body may feel physically tired, I have restlessness and have thoughts to do things, but then have to acknowledge that I can't and yet find it hard to rest and relax.

stiffness in knees , especially after activity like walking. Then also they feel tight when bend , and like tendons will tear if pushed to far.
no rarely but yes muscles ache after activity more than normal folk, like painful uncomfortable
9,  Sexual problems
single with no big desire to find a sexual partner
10, Spasms and stiffness
after activity can have leg jolt and jump and arm,usually one side,then the other,then both and arms at same time.
and body like exploding from my waist,or solar plexus
like I'm being winded
very fast velocity.
Jolting - body jolts and shakes more when tired physically.
stamping,extreme at times where my arms and legs are thrown very fast all over the place, in sporadic involuntary movements. On a couple of occasions this has lasted for about 1 hour.

Foot sometimes locks in a spasm in pointed position.
At times I feel so tense my jaw clenches and muscles tighten and i don't move, but have to use my mind to like instruct myself to move.
11,   Speech
stutter to give words,sometimes and other times say different word to which I'm thinking and wanting to say.
12,   Swallowing
no problems
13,  Tremor
can have very faint ones,like as if an electric charge is going through me,like there chair is vibrating or wherever my body makes contact ,it feels like its causing the tremor. Sometimes the vibration can be very strong and my body then becomes very tense, feels like a soaring energy inside.

  Treatments, therapies and ways I find to cope

*  i rest
*  approach things slowly

* if torsal weakens until i need to lay down.

- swimming I find is calming but after I am left tired physically, but It can sometime improve the energy I have.
*dancing helps release tension in muscles

*exercises for knees and balance
- my knees have improved with exercise , in that the swelling has reduced, but the strength in them has no really changed.
* Exercises I do to help my balance do not seem to bring any improvement, sometimes my balance is better than others, but not determined by what I do.

* walk with poles so go further and faster and more stable , to prevent trip and break
- I now use walking pole(s) and this has helped me greatly, in that I am able to walk faster, albeit I feel like my brain goes slower than my feet, and I feel like I'm walking really fast, but meanwhile everyone is walking faster than me and I try sometimes to walk as fast as them but my feet just won't go that fast.
but the use of the pole helps me have more range of movement, so exercises more muscle. without the pole even slight inclines are a struggle, but with poles I am able to walk steeper inclines without strain.
Consequently I am able to walk further and exercise more.

Plus my poor balance can easily have me fall over, but with the pole i am far more stable.
other times I feel lack of energy to do things and use my car to
drive instead of walking to achieve more with the little energy I have, which yes  is unpredictable so i don't plan ahead much but go with the flow of things, setting myself no deadlines with physical nor mental tasks.


I would like to add here that back at the beginning (2013) when offered help with my back weakness through a physiotherapist she wrote this report

Please note she writes in the 3rd conclusive paragraph.
' My impression is that this is mechanical low back pain with no neurology and there is therefore no clinical need to scan her back, .......'

17 March 2016
I phoned my previously allocated OT and left a message on her answer machine, re my housing needs. although I am aware I am no longer her client so she may not help, but I thought to try first with her as she knows my case.

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