[Mrs M]

Hi Everyone hope you are all well!

Just need a little advice please. As you are all probably familiar with my sores on my hand and toes I just wanted to get some advice.

First visit to Rheumy earlier this year and he noted the sores. He never mentioned what they were or what was causing them but wrote in a letter to my GP he suspected urticarial vasculitis! The sores went after several months but left my skin a purple kind of colour. In the last month I've had several new ones appear on my right hand. They begin as little blisters and then get larger and around the edge it looks like I've drawn in red pen? Also as I've mentioned before I went to A & E a couple of months back as my right hand went into spasm and I couldn't move it and it drained of all colour. Yet again no answers to that other than several doctors said that it was in keeping with a CTD ( nothings been diagnosed though!!)

Now my problem is that several weeks ago this right hand started shaking and I find it hard to manipulate small objects. Over the last couple of days I've begun to get worried as the hand is shaking all the time and even more when I've tried doing things. Should I go to GP and explain whats happening or will I seem silly? I remember at A & E when the vascular surgeon took a look he said that I should be referred to a vascular clinic which Rheumy said he would chase up but I've not heard a thing!

If you can give me any clues as to what it is and what I could do I would be very grateful:worried:

Many thanks and take care love
Mrs M x

 

[Maia]

I would most definitely go in to your GP, and explain about how you were to get an appointment at the vascular clinic but have not yet heard. He/she will be able to see your hand shaking and will hopefully get you referred quickly.

I'm not sure what exactly it may be, but when it reaches the point that it is interfering with the use of the hand, then it's definitely time to get doctor help!

My dad has a shaky hand too (but no sores) and it seems to shake worse the more he tries to keep it still sometimes. Doctor's here just take note of it and then move along & he's never really been investigated for it. I wonder if it's some early Parkinson's, but who knows for sure.

 

[sjink]

Hi Mrs M
I cannot help with your hand symptoms, and am sorry you are suffering them. But I do think it is best to go to the GP - he/she won't think you are silly, he will think you are being responsible for your health. Sometimes these referrals get stuck on desks and not acted on as quickly as they might, so you can ask about the vascular clinic at the same time.
All these strange symptoms can be a bit worrying and stressful and I hope you get some answers.
Love Sara
x
Love Sara

 

[star70]

Hi

I have shaky hands, but it is especially noticeable in my left hand. I have suffered from it for several years now and when I asked my doctor about it she told me that I have an ‘essential tremor‘. I find the word ‘essential’ odd, as there is nothing essential about it!

The shakes increase when I am stressed and if I have carried anything, all characteristics of an ‘essential tremor‘.

It is best that you speak to your GP about it, as there could be many underlying causes.

Regards

Star

 

[Mrs M]

Thanks Guys!

Went to GP today but came away once again very upset.
Explained things and it turns out that no referrals been done for me to the vascular clinic which is so disappointing. I feel that the vascular surgeon just palmed me off!
Also the GP (not my regular GP as he wasn't in) was so not bothered and just told me to 'chill and not get depressed'. HELLO I'm sick of all this and not having straight answers but I'm supposed to chill. If only he could be a fly on the wall for 24hrs and see what I have to go through!!!!!!

He suggested increasing my ami to 50mg but I'm so reluctant because of how they make me feel and to be honest I feel no better. He also said to take 8 paracetomol a day as I can't take anything stronger because of my dicky tummy!

One interseting thing he said is that I just have to get on with the CTD that I have? This is the first I've heard as I explained that Rheumy said I have Fibro. He said that it is CTD but not Lupus but couldn't explain any more so my head is in a spin.

Had a really bad day and hope that tomorrow gets better.

Thanks for listening and I hope you've all had a better day!

Mrs M x

 

[greenhaggis]

Mrs M,

From my experience with trying to solve the puzzle of whats wrong you definately need to stay focused and strong - its your body and your symptoms and your pain and stress!

What I've also leart is to find the most useful GP in my practice and keep seeing them and make sure that when their on holiday or I am, that most problems I may incurr are covered and that I have any meds issued to keep me covered. Also that if the GP is absent that they have made sure another responsible GP is well verse on how to cope if I have any emergency problems. I never see a locum or one of the other GPs other than the the one that has been with me all the way through my illness - the other ones have not got a clue basically!

Have you phoned your Rhuematologists secretary to ask her/him to chase the appointment for the vascular clinic. They should be able to do that without seeing you again if you explain the problems you are still having - you are a current patient after all!

Knowing and experiencing how hard it is for anything to be diagnosed and the hypocriacy of the NHS I have no problems now in chasing/nagging and chasing again certain people to do something about my health.

Always remember it is your health not theirs!

Love Lesley

 

[Lily]

Hi Mrs. M,

I'm with Lesley on this one, it's the Rheumy I would be pestering about the referral to the vascular surgeon. He is the one that suggested it and it's probably just got lost in the system or forgotten about. It's up to you to bring it to their attention that nothing has been done about it. This stand-in GP won't bother about it.

I'm sorry you came away feeling like that :hugbetter: Like Lesley I just don't bother seeing another GP in the practice, only the one that's been with me all along. The others haven't got a clue and don't take the time because you aren't their usual patient and they know little about what is going on with you. They also know that your normal GP will handle whatever needs to be handled so why should they bother. Sad but true, it's just the way they work most of them.

This hand problem should also be mentioned to the Rheumy, you are a current patient and this is a worsening of an existing problem, something they would want to know about and certainly would help them to push the vascular surgeon's referral along.

We learn that we have to take matters into our own hands and keep nagging away at them. Otherwise we are just forgotten about. Here's some strengthening hugs :grhug:

love
Lily

 

[Raglet]

unless your hand is changing colour, then I would think that the correct referral would be to a neurologist. I have a tremor in my hand, and it is definitely in my neurologists territory. I see a vascular surgeon for other problems with my arm/hand, but my vascular surgeon isn't interested in my tremor (I have an intention tremor).

Actually it is true that we all just have to get on with the business of living with our disease, otherwise we'd have no life at all.

What does your gp think about your hand, and does he/she think you need to be referred on ? I would just get your gp or rheumie to refer you where ever you need to go. I find that referrals from A&E doctors often don't happen so in my experience it is best to just forget them and get someone else to refer you instead.

hth

raglet

 

[Lily]

Hi again,

I've just gone back and reread this turn of events and admit I got confused :hehe: (not unusual lately :lol: )

It was the other hand that turned blue purple that sent you to the ER? If so then I can understand the reason for the referral to a vascular guy and that should be chased up IF this is still occurring in that hand.

The other hand that is shaking does sound like a tremor and therefore a Neurologist would be the best person to look at that.

Both problems need the Rheumy to be contacted about, I wouldn't wait until your appt in August as no doubt you will have a lot of other stuff to talk about and it won't hurt to let him know how you are faring (i.e. not very good by the sound of it)

I just found another post of yours I missed and will comment further on it about the Ro antibody they found and your current diagnosis of Fibromyalgia only..............

love
Lily

 

[Mrs M]

Thankyou so much for you support ( it's much needed at the moment.)

Lesley I've phoned Rheumys secretary about referral but she put me through to someone else in the hospital and the short of it is I was passed around so much and still nobody could give me a clear answer! I think I need to get back in touch and ask whether Rheumy can refer as he seemed eager that A & E vascular surgeon wanted me to attend the clinic!

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Lily thanks for your help. I'm sorry for all the confusion but I seem to get myself in such a muddle these days. Also because of so many strange things cropping up I don't know if I'm coming or going:lol:

It was the same hand that took me to A & E. Things seem to be going from bad to worse with that hand which isn't great as I'm right handed so I rely on it working properly.

Thanks for the strengthening hugs they really made me smile

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Raglet just to say my hand does change colours ( red, blue, purple, blotchy etc...) Gp wasn't bothered by the shaking and said that the amitriptyline should help but after 6 weeks on the meds and things are getting worse I'm not too sure. Also I was under the impression that the ami was for the fibromyalgia? Am I wrong on this and does ami help for other things?

Take care everyone love
Mrs M x

 

[Raglet]

the red blue blotchy thing sounds like reynauds, which doesn't need treating by a vascular surgeon in my opinion - rheumies are quite capable of doing that.

Vascular surgeons get involved generally when there is a blockage somewhere in which case the affected area turns purple and stays purple, and becomes permanently very cold (which is what happened to me). I then needed to have work done on the blockage (which is where the vascular surgeon came in).

Reynauds is vasospasm rather than a bloked artery. Of course vascular surgeons do all sorts of other stuff too like varicose veins etc, and likely a whole bunch of stuff i have never heard of.

I am just curions as to why the vascular surgeon suggested that referral - maybe he didn't realise that rheumies regularly treat reynauds (if treatment is necessary). My rheumie put me on adalat (nifidipine) for my reynauds.

cheers

raglet

 

[cad]

Hi Mrs M,
so sorry you are having such a rough time.
I was just interested to know if you know if your rheumy did any furthr testing in terms of vasculitis.
I havv terrible hands, i do have raynauds aswell.
I have just had tests ordered which look fo indications of vasculitis.
ANCA, Cyoglobulins, lipid profile and have also been referred for an angiogam.
I would definately contact you rhemies secretary to chase up your referral and perhaps ask about the tests and if any results are back.
I wish you all the best and don't give up hasseling them until you have the appointment.

Good Luck

Take Care

Cassie

 

[Mrs M]

Hi Cassie thanks for you tips!

I don't think I've had any tests for vasculitis but I think I will ask Rheumy about that seens though he was the one that suspected it!

Hope you're having a good day.

Mrs M x

 

[Mrs M]

Hi Guys forgot to mention something!

I was looking on the internet as someone asked me whether my 'shakey hand' is a side effect of amitriptyline! I found that a not so common side effect is involuntary muscle spasm and tremors. So could this be a side effect and the silly GP increased my dose and told me to 'chill' when in fact it's the tablets that's the cause. mmmmmm!

Mrs M

 

[KarolH]

Sorry I am late to post to this thread.

Mrs M.

I am new to Lupus and just dx so I am not much help to you and certainly not as knowledgeable as the others are here but I wanted to let you know that from time to time I get the shaky hand thing.

For me, it happens mostly in my dominant hand and mostly when I have used the muscles too much. For example, If I am gardening and pulling weeds or if I am writing a long letter and holding a pen for some time, etc...

You get the idea. It also happens to the muscled in my forearms but again mostly my dominant forearm.

My GP, thank god is wonderful. I think if he blew me off in any way, shape or form I would be looking for someone else.

He is the one who did the initial bloodwork that eventually led to the dx of Lupus.

I sure hope your feeling better and that you get a dx of something definite so you can get on the right meds and start feeling better.:wink2:

 

[Mrs M]

Thanks Karol

It's my dominant hand also that I'm having the problem with. It just seems from getting up to going to bed it's constantly shaking and even more so when I do anything.:worried:

The thing is I feel really conscious about it if I'm talking to anyone so I try to keep my hand down out of sight. Silly I know but wouldn't know what to say if someone mentioned it. Obviously hubby and family ok with it. Probably just me being over the top and sensitive.:hehe:

Mrs M x

 

[Mrs M]

Hi Guys

Just to say saw regular GP yesterday and he seems convinced its some kind of vasculitis and although no tests are showing he said that they can clearly see what's happening with my fingers. Also he said that I can't be left for much longer without treatment so hopefully something will happen on Friday this week when I see Rheumy.

As for the shakey hand he looked on internet and tremors is a rare side effect of Ami so he was pleased that I didn't up the Ami as other GP suggested.

It's my luck to have the rare side effects. Me and meds just don't mix well. :shrug:

Mrs M x