Your Experiences I'm worried

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Your Experiences I'm worried

Postby Shaun233 » Wed Oct 08, 2014 8:17 pm

Hi guys and girls I've been registered about 10 months but not a active user please bear with me this may be a long post

Firstly I started having pain in joints and muscles about 12 months ago my doctors thought it was fibromilagia and it took me 3 months for my gp for them to transfer me to a rheumatologist

I saw the rheumatologist and after a thurrow examination he said that he didn't think he was best positioned to help and Transfered me to a nurologist which was done quickly in just over a month

When I saw the nurologist he asked me a few questions about my history he then asked what my job was I said that I hadn't worked for a few years due to serious depression

He said that I had been Transfered to him by my rheumatologist as he thought that I had Parkinson's diseas but looking at me I looked fine but he would examine me all the same

When the neurologist examined me he asked me to walk up and down the corridor a few times(in front of all the other patients) he took me into a side room and shone a light into both eyes then tested my reflexes

When he tested my reflexes on the base of my foot where they run a blunt object from the sole upto the toes I stll had my socks on

After five mins the full examination was over as I said all he did was look at my eyes and test reflexes of knees ankles foot and elbows then we went back to his office

We sat down and he said that I didn't have any neurological conditions and certainly didn't have Parkinson's he said that I walked with a gait due to pain in lower back and knee and I had a essential tremor when my body was under gravity ie when arms extended out my hands would shake he put this down to depression or fibromilagia syndrome

The appointment was in March this year at sheffield royal halamshire hospital

Since then I have continued on a downwards spiral I have lost muscle in the back of my left hand and it has become bony and you can see the bones from all 4 fingers the fingers are starting to curl over but only very slightly but I'm experiencing difficulty cutting up my dinner and hold things with the left hand I can not open jars and the grip has almost gone if it continues the way it is doing it will be unusable by Christmas

The right hand has also started to go you can just see where the knuckles are muscle is just starting to waste

My left leg is much smaller than my right the muscle is not wasting but is shrinking

My gp didn't know what to do for me as she had sent me to the rhmatologist and nurologist so sent me for physiotherapy this was in July this year

I saw the physiotherapist in August and he said that I had muscle weakness in both sides but the left was weaker than the right but my reflexes were perfect he said that I had seen people further up the ladder than him

He then went onto say that if he hadn't read my notes and he had examined me he would have said that I have a nurolical condition then said under the circumstances he was going to ask my gp to refer me back to the nurologist I said could you please make sure that it's a different nurologist this time as I wasn't too impressed with the last one

A few weeks ago the new appointment came through but guess what with the same nurologist so I asked my gp to change the appointment this was 3 weeks ago tomorrow

After making several phone calls she managed to get hold of the nurologist secutary who said that she would email him and ask him to refer me to some else

Today we still hadn't heard any thing so my wife telephoned the nurologist secutary when she looked on file he had taken me off his books but not transfered me she said that he must not have read the email properly I'm disgusted so now I need to go back to my gp for a referral again

In the last 6 weeks I've had 3 falls 2 at the weekend just gone we only have a upstairs toilet and I'm struggling to get up the stairs and really frightend I may fall now

I've hurt my hips shoulder and left arm are all bruised from the fall but as luck would have it I havnt broken any thing thank goodness

My wife phoned the out of hours doctors service on Saturday after my last fall had on Friday night also they were concerned and sent a paramedic

The paramedic checked me over and said all my vital signs were good but would prefer me to be looked at by a doctor he gave me 2 options either take me to A&E or send a doctor to my home I said that I would sooner to go into our out of hrs walk in centre and see a doctor there

After a two hr wait at the walk in centre the doctor said that there wasn't much she could do but gave me a good examination she said that I had serious muscle weakness down the left side and that in 30 years of being a gp she hadn't seen any one with the symptoms that I was presenting with I asked her if this could be something like motor nuerons disease and she said that scarey diseases should be ruled out by my gp and in her opinion my gp was not doing enough for me and said that I need to see my gp urgenty on Monday

I went to my gp yesterday Tuesday it was with a gp that I had not seen before and he said that he thought all my problems were caused by my depression

I wasn't too happy I said that I don't think you can loose muscle definition with depression he said no but with old age you can I said I'm only 43 he then said well your not moving your muscles enought then He then went onto say that even though I had a neurologist appointment booked it didn't meant that I would get a diagnosis I came out of that appointment and could have literally topped my self I'm so sick of this now

What I'm wondering is has any one on here had muscle loss , falls ,muscle weakness and shaking even if I eat something like a French stick sandwich when I try to bite it my head sakes fro side to side I caunt bit into apples I'm having to use far more force than I did before and much smaller bites also I'm getting what I can only describe as restless legs/arms where an arm or a leg kicks or jumps out uncontroably this happens daily not just occasionally also in the last 2 weeks my muscles in biceps and calf muscles have been pulsing in and out this can be seen when looking at the effected muscle but only last for a few minutes at a time but happens several times in each limb through the day

I have had to buy a mobility scooter just to get around as I can not walk far and I'm going to need a stair lift very soon as it's a struggle to get upstairs to bed I'm urinating in a urine bottle through the day but this isn't ideal as I have a daughter only 18 months old and two grown up sons 18 and 15 with girfriends in an evening they are having to go out of the room so that I can pee in the bottle my wife is then running upstairs to empty it

We asked the doctor yesterday if there was any extra financial help that we could get or if adult social services could help he said that without a diagnosis there not much any one can do and that's not going to happen any time soon as I havnt even got a nurologist appointment now got to go back to my gp to be referred back again

Just wondering what people's view and thoughts are on here any ideas very much appreciated
Last edited by Shaun233 on Wed Oct 08, 2014 8:48 pm, edited 1 time in total.
Shaun233
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Re: Your Experiences I'm worried

Postby Theresa34 » Wed Oct 08, 2014 8:48 pm

It doesn't sound like the fibro symptoms I have or are familiar with. Some of what you said sounds neurological and when you mentioned your hands that sounds like rheumatoid arthritis. I'm surprised no one has an idea of whats happening to you! Surely the rheumy should have done some bloods and xrays! I'm so sorry you're going through this. Keep on at the gp and dont give up until you have an answer. Something clearly isnt right. Perhaps if its possible change gps or gp surgeries.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: Your Experiences I'm worried

Postby Shaun233 » Wed Oct 08, 2014 8:57 pm

Thank you for you reply it's very much appreciated

The rheumatologist did 12 X-rays in total he said that they had come back largely normal but I had a vitamin b12 deficiency and would need regular injections and this could cause nerological symptoms

But when I went back to the gp she said that I had full bloods done a month before and all was ok so sent me back for blood work again this was February this year and the b12 came back normal so I've never had the b12 injections

All other blood work that was done by the rheumatologist came back normal no signs of arthritis

The nerologist also sent me for blood work and a mri scan of the brain all was normal again things like motornurons diseas don't show on brain scans i had a relative die of this so I know a little bit about it my dad also had Parkinson's and my mum has had a essential tremor since 40 so there is nerlogical conditions in the family but I have 3 other siblings and all are fine apart from my eldest brother has had cancer

A few friends have said the same its time to change gp but it takes me a while before I can get to know the gps and really open up to them this is with the anxiety/depression but I am seriously contemplating changing as I just don't seem to be getting any where and it's starting to effect my mental heath as well as my physical Heath
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Re: Your Experiences I'm worried

Postby denys » Wed Oct 08, 2014 11:35 pm

Ask your doc to refer you to the Occupational Therapists, they can get you things like a commode, walking frame etc. You can self refer to them if you have any problems and speak to your benefits office or someone like CAB to check you are getting all the financial help you are entitled to.

I agree with Theresa, push for that Neurological referral check to see if there is one at another hospital in your area as you have choices about where you attend.

Good luck hope you get the answers and help you need soon
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Re: Your Experiences I'm worried

Postby Shaun233 » Thu Oct 09, 2014 12:44 am

Hi Denys thank you for the reply my wife has been in touch with the occupational therapist team waiting for a asement but when I went to see my gp yesterday to see if he could help further with the asement proses as its been 7 weeks already since we first made contact with the team
The gp said that they wouldn't be able to do much first reasons was funding issues the second was I'm undiagnosed so they don't have a diagnosis to work with his words were with out a proper diagnosis your in limbo land and unfortunately there not much we can do about it until you see the nerologist and even then you might not get a diagnosis which has made me feel very down I just don't know which way to go I'm frightend that I'm going to end up disabled and not be able to get any help already im having to rely on my wife and kids more and more im old fashioned and proud it's not a nice feeling having to ask for help also this is having an effect on my kids my daughter at 11 said the other day dad if you die then Sophie (our gorgeous daughterat 14 months) won't know you me and my wife try to keep as much as possible away from kids but unfortunately they see things I've never talked about dieing in front of them so this must be playing on her mind to come out with that statement I'm worried that my son who's 15 in in his final year and this is a important year at school with exams etc I'm concerned that this may have a effect on him also

I feel it's important to get a diagnosis not only for me but for the whole family
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Re: Your Experiences I'm worried

Postby *Lisa* » Thu Oct 09, 2014 10:45 am

Did the physio give you exercises to do to strengthen the muscles?

Other areas to explore that could be of help is an Osteopath & Chiropractor even if you just go for an assessment for there opinion to add to the others to build up more of a picture for the Neurologist.
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Re: Your Experiences I'm worried

Postby Shaun233 » Thu Oct 09, 2014 12:28 pm

Hi Lisa no he said that he couldn't understand why my gp had refered me as what I was experiencing was too complext for him to deal with but said that he would examine me to see what he could find he was shocked with the muscle weakness

He said that he would see my gp to get me the neurologist apoitment he thought that hydrotherapy would be benaficial so transferred me there he said that once they had finished with me he wanted them to transfer me back to his care just to see if any thing new had happened and to see what he could do next

He suggested that I purchased a sponge ball and twice a day for 10 mins just squeez the ball to try and build the muscle back up which I am doing but it's still continuing to wast he also said that a small walk for 10'mins would be beneficial failing that buy an exersise bike and have 10 mins a day on that he said all theses things in conjunction with the hydrotherapy would be beneficial

That was 7-8 weeks ago I had my first hydrotherapy apoitment last Thursday the hydrotherapist said that without a diagnosis she was limited to what she could work with but was concentrate on exercises to try combat the weakness

If I'm honest the physio has been the best out of all my care providers he gave me a really good examination he said that my reflexes were normal which he found strange With the muscle weakness

I can not see my gp wanting to transfer me to any one else I've had to fight just to get the second neurologist apoitment even now I've got to go back to get that sorted again as its been messed up
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Re: Your Experiences I'm worried

Postby denys » Thu Oct 09, 2014 1:40 pm

Shaun first of all I was undiagnosed when I got help, the practical help is to enable you to get around and they have equipment in stock, I got grab rails at the front door and rails up the stairs plus other bits and bobs in the bathroom etc. Phone them yourself (or your wife) to find out where you are on the list.

Secondly, speak to the schools about your fears for your children, they can put things in place for them especially your son as he's under pressure from exams and things at home, your little girl may need to have some counselling to see where the thoughts are coming from and to help her allay all those fears.

I know its awful having to ask for help but if you get some aids to help you then you may retain your independence for longer too.

Have you and your wife had any of the talking therapies, maybe you could ask your doc to refer you for some, it is to help you cope with the situation and to give both of you tools to help, just a thought :-) :-)
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Re: Your Experiences I'm worried

Postby Shaun233 » Thu Oct 09, 2014 2:06 pm

Hi Denys thanks once again for you reply I've just had a phone all from the occupational therapist they are coming to see me later today so fingers crossed they can help all the items you mention would be a great aid

I've said more or less the same thing to my wife that she should contact school but she feels without a diagnosis doesn't really know what to say to them
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Re: Your Experiences I'm worried

Postby *Lisa* » Thu Oct 09, 2014 2:12 pm

Do you know if the GP has received the physios report? The GP should refer as advised. I would also recommend you get a copy of the physios report which your entitled to, to take with you when/if you see Neurologist ad for the occupational therapist.
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Re: Your Experiences I'm worried

Postby Shaun233 » Thu Oct 09, 2014 3:55 pm

Hi Lisa I would have thought that they would have revived the physio report as it was about 7-8 weeks ago the occupational therapist is coming in about half an hours time

Gp has just telephoned and has booked me in the morning at 10am so I will enquire about the physio report I think that's a really good idea to get the report to take to the nerologist although it may be that they have already sent the details to him

When I was booked to see the rheumatologist he said that my gp had wrote a comprehensive esay covering all aspects of my Heath and her concerns obviously that was January this year
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Re: Your Experiences I'm worried

Postby Zia2014 » Thu Oct 09, 2014 4:51 pm

It doesn't really sound like fibro to me but I am not medically trained obviously. Sorry if I've missed this but have you had an MRI scan?

I too get depression and hate opening up to new GPs, but tbh you really need the support and one who will be pro-active on your behalf. Please consider seeing another, you must get the help you need and you need someone medical who will help you through this.

Good luck x
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Re: Your Experiences I'm worried

Postby Shaun233 » Thu Oct 09, 2014 8:05 pm

Hi thank you for the replies and advice every one it's really helped my mood today so a big thank you to you all

I've had the occupational therapist come to see me this after noon she's spent about an hour and half with me she said that until I get a diagnosis then there is not much help she can give for things like stair lifts fitting showers etc but can put rails around bath and offer a bath seat she can put a rail around the bed and toilet she's can get me a commode and a wheel chair and a walking frame these are all the things that she has ordered
She said did i feel like showing her how I got up the stairs so we went to the base of the stairs and I really struggled to get up same as usual she said wow I think we really need to do some thing she's going to try and get hold of a used stair lift as this would not need a grant approval just that on its own would be a great help the hour and half that she has spent and what she is going to do will really help with my day to day life
thanks once again every one
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Re: Your Experiences I'm worried

Postby *Lisa* » Fri Oct 10, 2014 12:10 pm

Im glad it went well and you can have some aids to help you with. Maybe ask the OT to write a letter to GP explaining you need a diagnoses to be able to have more equipment this may help with your referal and time waiting to be seen.
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Re: Your Experiences I'm worried

Postby Shaun233 » Fri Oct 10, 2014 10:13 pm

Hi Lisa thanks for your reply she's going to write a report a copy will goto the gp and I will get a copy also so fingers crossed things are moving in the right direct

I've seen the gp today she was disgusted that the nurologis has cancelled the apoitment she is now going to write a letter asking for a new nerologist and to be seen ASAP she said I've been waiting long enought now
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