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Struggling

Hi
I’m really struggling with getting a diagnosis when my mums mum had MS and my aunt and my step sister on my mums side, I have fibromyalgia, ME and chronic IBS but over the last year and more so this last month I’m now getting numbness in my feet, toes, hands and also pains in the back of my neck and head, I sleep on and off every hour, I have numerous falls and just feel lost now as I’ve just had an MRI scan and my neurologist won’t let me have a spinal test ( which my sister had to have to get a diagnosis) because his words were not everyone can have one because of NHS costs, I’m mortified! And my doctor says we can’t rule out MS as it flows through your mums side but he will see me again in a couple of months to see how I’m feeling but still take all your medications ( which includes medication which would be given to an MS patient, do I now have to go private for a spine test ?
I’m so lost
If anyone could help me in the right direction please

Kind regards

Dani

Hi Dani - sorry to hear you’re having such a terrible time.

To be honest, I refused a lumbar puncture when it was suggested. I had one aged 7 when I had meningitis and the headache afterwards was horrendous and put me off. But I have read on here that LP’s are not necessarily conclusive. You can have a clear LP but have MS and vice versa. In my own experience it’s the MRI’s and the build up of the symptoms experienced over a number of months / years that form the diagnosis.

Don’t be alarmed that some of your medication is the same as what is given to MS patients. My wife’s son has fibro and he takes (or used to) some MS type treatment.

I wouldn’t waste your money on a private LP. Good luck with it but it is a case of sitting it out. Took me 11 years from first symptoms in '99 to D/X in 2010.

Hi, no I wouldnt advise spending a lot of money on an LP.

I can imagine it would be very expensive.

Although MS isnt strictly thought of as genetic, it can have a familial history.

Do you have a follow up appointment to discuss the findings of the MRI?

pollsx

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I am sorry that you are having a horrible and worrying time.

From what you say, this might be time to stop banging your head against a medical brick wall and instead sit back and let things unfold as they will for a while. It is not clear to me whether the neurologist has yet discussed with you the report on your MRI. If that is still to come, then that is all the more reason to wait to see what happens there. Even if that has happened, and the result is that the neurologist wants to do nothing further for now, I think you would do well to take his/her advice for a bit. Neurologists are like waiters in that regard: you can’t get them to do anything until they are good and ready to do it, so sparing yourself futile effort can be a good plan.

If your fears are justified and it turns out that you have MS (and I hope you don’t), it will make itself known soon enough, and without you having to change anyone’s mind about what needs to happen next. These things do tend to take time, though, and are rarely straightforward, as you know all too well already.

BY the way, lots of drugs that are prescribed to help with MS symptoms are used to treat other conditions and symptoms as well - in fact dealing with MS symptoms is often not their main purpose at all. Amitryptyline, carbamazepine, gabapentin, prednisolone etc spring to mind here, but the list is a long one. My point is: don’t assume that they think you have MS just because you have been prescribed a symptom-relieving drug that people with MS tend to be given. Lots of other people get them too.

Good luck.

Alison

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Hi Dani

I would assume that the neurologist doesn’t think your history, your neurological exam and your MRI results don’t suggest that a lumbar puncture is needed, maybe he just doesn’t think you have MS. His words were of course very poorly chosen, but I imagine he means that the NHS doesn’t have the funds to do an unnecessary LP. And he believes it is unnecessary at this point. Obviously your other medical conditions can share symptoms with MS as well, so maybe that leads him to wait a bit longer before doing other tests.

As Poll said, MS is not classed as a genetic disease. Yes, there can be a familial relationship, but it’s by no means something that you are very much more likely to develop as a result of family members with MS. Have a look at https://www.mstrust.org.uk/a-z/risk-developing-ms It gives the statistical chances of getting MS dependant on your relationships with other people with MS. If you consider that you only have a 1 in 5 chance of getting MS if your identical twin has it, you can see that more distant relations decrease your risk.

At least the neurologist is going to see you again quite soon. And don’t forget that a lumbar puncture might help with diagnosis, but it’s MRI scans plus neurological exams that are the most useful in diagnosing MS. Many people never have an LP.

Sue

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Hi

thankyou everyone for replying and helping me to try and look outside the box, this has been ongoing since 2009 I’m going back soon and to my gp to discuss things in further detail but I’m thinking more that it is ms especially watching my grandmother whom had a very aggressive form and past within the year a while back but I also have my aunt and sister who I talk to regularly especially when I’m at my worst, I just have this feeling that it is it I’m just going to have to sit back and wait.

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What you need to do is list all your symptoms the ones that trouble you the most. The trouble with M.E. and fibro they are virtually the same symptoms, although they have only a few things that people with MS dont have. Also anxiety is horrible, and I wonder if your particularly anxious and scared you may have MS in light of your grandmother. Its very rare for someone to die of MS well actually you dont die of MS you die with it, something else will be the factor. Perhaps you are not aware of other things that were going on with your grandmother at the time. It is not considered heriditary but a predisposition, and as there are others in the family with MS, hopefully you will be an exception. I would never want another LP, the one i had just muddied the waters, and now my neurologist doesnt use it for diagnosing MS. It took me 10 years mine was finally diagnosed through two VEP tests and MRI’s. I hope it isnt MS to be honest although M.E. is a terrible delibating disease and can be very hard to live with. My daughter has M.E. and fibro. She was test for MS, but non of her tests were conclusive for MS, and to be honest i dont think she has it and she has M.E. and has dealt with it very well, and now back to work which is a blessing. She is 45 and deal well with her M.E. and fibro and is on a pure Paleo diet. I paid for both daughters to have genetic screening, and neither of them pointed to MS, but weirdly enough they follow all the other females with tyhroid issues hypothyroid, yet i dont have that lol. Both my sisters have it, my neice has it, and both my daughters have it. My father was auto immune lupus, and ALL my family have had some form of auto immune issue. I am touch wood the only one with MS and long may it stay that way, but i really do worry about my neices and nephews, and 2 of them have developed M.E. oddly enough. Try not to worry too much its hard to get a diagnosis, but if it is MS sadly it will finally show itself, let us hope it doesnt. xxxxx