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What I might have

I have been diagnosed with fibromyalgia in 2004 and about a year ago I started to develop other symptoms that are far more intense than the symptoms associated with fibromyalgia. It includes pain in the whole body , sharp burning pain tha can effect either side of my body and sometimes the whole body from the top of my head all the way to my feet and other times it can effect just quadrants and halved. It tends to be located in a specific part of my body for a few days before it switches to other places. I also feel tightness in my joints that feels like my skin is rigid and it is painful to make movements like closing my hands and sometimes from the middle of my feet to my toes gets yellowish, cold and I lose all the sensation on them. I has worsened in the last 6 months and now I can only get out from bed with ibuprofen and paracetamol which I have been continues taking for the last 6 months. When Work out more than I 'should ’ like going to the supermarket and cleaning my house on the same day the burning sensation gets more intense and it least longer to disappear. The only thing that helps is if I lye dawn. I also have some kind of vibration sensation that goes from my back down to my feet especially when I am lying down and it intensifies when I move around more.i have also problems in my kidney where I have done some x-Ray and my right kidney is smaller than the left side.
I have I long history of migraine and headache that have worsened in the last year. Nowadays my migraine tend to start when a walk for less than 10 minutes and it usually is associated with pain that radiates upon from my neck over the top of my head to one side or another. I also have been diagnosed with /Raynaud’sphenomenon. During my neurological examination the doctor found I have 4/5 weakness of shoulder abduction bilaterally. Reflexes were briskish but not pathological and sensation was objective normal but subjective reduced in the right hand with sparing of the median aspects of the hand (not sure what that means). The reflexes were very brisk at the knees and at the ankles and the plantars were both mute. I have done EMG, IMR exams last week. And I did a lot of blood test including all tests related to autoimmune diseases least month but I don’t know the results. What got my attention is that I received a latter saying I have been referred by my actual neurologist to go to a genetic clinic and I am not sure why.
I am wandering if anyone has any idea of what to make of my symptoms and if it might be related to MS and if so what is the connection with me been referred to a genetic clinic. I appreciate all the information you can give me because my neurologist will only enter in contact with me when he gets all exams results and if he will be waiting to have some feedback from the genetic clinic it will take forever. Thank you.

Morning Catherine,

There is no genetic test for MS (several dozen genes have been identified as risk factors, but none of them prove someone has it).

So being referred for genetic testing suggests that MS is not the suspect.

Are you in the UK? I ask, because I would assume you have rights in connection with ANY genetic testing, and at least to know what you’re being tested for, and to have counselling about the implications (i.e. whether it’s something you’re sure you would want to know).

It seems very odd to be referred for a genetic test without being told what it’s for.

I think your neuro’s refusal to have contact with you is unreasonable, and you should be able to ask, if you have questions about the tests you’re being sent for. I don’t know whether I’m just a “difficult patient”, but I would not consent to a genetic test without understanding what I was being tested for. I’ve had two in my life, but neither were for diagnostic purposes. One was to help with ancestry research (a hobby), and the other was to contribute to a genetic study about MS - which I’d already been diagnosed with. So I didn’t get any new health information from either.

Maybe you can contact the genetic clinic themselves to ask about it? I’m pretty sure it would be unethical to do genetic tests on someone without explaining what it’s all about. You have to give consent - not because the test is dangerous, but because it could reveal highly sensitive information, and it’s your choice whether to proceed. If it’s to help with diagnosis, I assume you would, but there’s at least one person on these forums whose illness (not MS) is believed to be hereditary, but who has opted not to have the tests that could prove it beyond doubt. So not everybody wants to, and this is certainly something the clinic would have to discuss with you.

Tina

x

Thank you for your help. I know it is difficult to answer my question 'quay I might have ’ but just by talking with people that experience similar problems makes me feel I little bit better.

I have try to contact the genetic clinic but it always goes to a voice message and even so I have left 3 messages they haven’t contacted me yet. I have requested from the hospital a copy of my medical records (blood test and MIR scan).i will aks my gp for further details about the genetic clinic. Now I just need to wait and hope for the best.

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What a horrid time you have been having! I don’t have any suggestion to offer, I’m afraid, apart from the observation that what you describe (particularly the whole-body symptoms) doesn’t sound awfully like anything I recognize as MS from my personal experience of being me, but that doesn’t mean much (the experiment’s sample size lacks something in terms of procedural rigour, doesn’t it?) Whatever the neurologist has in his/her mind, it doesn’t sound as though he/she thinks you’re exactly a dead cert for MS either, given the other avenues being explored.

Whatever ails, I hope that you get to the bottom of things soon. I suppose the good news is that, whatever it is, isn’t likely to be an acute matter requiring urgent intervention. One of the small consolations for things having been going on for a little while. Not that this is much comfort, though.

Good luck with it all.

Alison