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Anyone also have MS?

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Amberzak

Amberzak

Well-Known Member
Relationship to Diabetes
Type 1
ive been struggling with a condition called trigenimal neuralgia, and I had a brain scan. They found some lesions on my brain.

I've also been having difficulty walking and numbness as well as other symptoms which I've been too scare to tell anyone because I feared it was diabetes complications.

Anyway, I've been referred to a specialist because they think it's MS primary progressive. Just wondered if anyone has type one diabetes and MS on here?
 
I'm so sorry that you have this to deal with as well.
 
To be honest, I was so scared my numbness I kept getting was diabetes related.

I'm just wondering how any medication will react wkth the insulin/diabetes
 
Hi Amber, this forum has a lot of useful info so hopefully may help you https://community.mssociety.org.uk/forum do remember though that just because the radiologist has indicated it could be MS it might be the case it isn't. It's a very long drawn out affair by a neurologist so finally diagnose you, it can take up to two years to get a yes or no unless very clear cut.. (Speaking from experience) I can sympathise with thinking all the neurological symptoms were diabetes related been there and worn the Tshirt, Mine turned out to be a very rare neurological condition that can and does resolve it's self in some people. Stay strong, I'm thinking of you.
 
Was yours better or worse than MS pumper sue?

There's things wkth me that doesn't fit ms. I don't relapse. I just get steadily worse. And it's been happening since childhood. That part doesn't fit ms. But the fact I also have trigenimal neuralgia (was diagnosed with that a few years ago), and my pain in muscles and weakness and that does match ms.

I keep saying to myself. I'm 32, I shouldn't be having trouble getting up the stairs or from walking all day.
 
Mine was classed as resolving which I re-classed as revolting 🙂 There has been a steady improvement in the last year and what I have now is it as far as recovery goes I suspect. Looking on the bright side what I have now is a massive improvement. I can walk a fair distance now where as before I struggled to even get out of the house some days. Still have to have a long rest though after a walk and need to set a plan so I do not get exhausted.

There are a couple of forms of MS, but don't what ever you do think it's a done thing that's what you have, the neurologist will check the scans he will also run loads of tests over a period of time so you wont get an instant diagnoses of what you have. I had quite a few scans some with dye so my spinal cord was enhanced as well which is where they found the problem.
 
Yeah. There's lots of conditions that cause lesions on the brain.

I just don't like this limbo. I've been referred to rheumatologists because they thought my pain was arthritis. It wasn't.

With the diabetes it was such a simple diagnosis by comparison.

All I know is that there is definitely something not right wkth my body. I fall over about twice a month, my muscles seize up and then I can't move and I find it so hard to relax. I get cramps and I'm in pain. I feel like I'm 60 but I'm only 32. And the more exercise I try and do to get fitter, the worse it is on my muscles.
 
Really sorry to hear you are having to cope with this on top of the diabetes :( I know how horrible neuralgia is - I get bouts of it from time to time, though thankfully only brief ones.

I don't know very much about MS treatment, so can't help on the meds front, if it does turn out to be that, but I do know that as far as symptoms are concerned, MS is very similar to ME (in fact, I know a couple of people who have been back and forth between specialists for a while being told "you have ME" ... "no, you have MS" ... "no, you have ME" ... and so on. Brain scan abnormalities, walking difficulties to the point of collapse or being unable to get up at all, pain (usually in muscles but also including neuralgia), finding it hard to relax, and feeling twice your age are all normal in ME as well as in MS, so if you want info about any of these or other overlapping symptoms feel free to pm me.

Numbness isn't usually a symptom of ME, however, and I don't think the brain abnormalities it causes would be described as lesions, so I don't think whatever you have is likely to be ME, however ...

Amberzak said:
the more exercise I try and do to get fitter, the worse it is on my muscles.
Click to expand...

... this really rang alarm bells for me - the primary diagnostic criteria for ME is "post-exertional neuro-immune exhaustion" - in other words any exercise makes you ill. I don't think it's quite the same with MS, but I do know that people with MS become exhausted after a small amount of exercise, and have to pace themselves. In both cases the advice is always to pace and never to push yourself, so exercise should be gentle and/or brief, always stopping before you start to hurt or get tired. So if your exercise is hurting you, I'd change what you do or cut back on it, if I were you, at least until you know what's wrong, as it could be making you worse. I know that's not ideal with diabetes, but it's better to be doing something gentle now and something gentle in a few years' time than to be doing something strenuous now and as a result being unable to do anything at all in a few years' time. There's more about exercise on the MS Trust site here: https://www.mstrust.org.uk/a-z/exercise (though bear in mind that if it is not MS you have, this might not be the right advice - it certainly wouldn't be for ME).

I hope you are able to get a diagnosis soon and don't end up being sent round from pillar to post. At the very least I hope you are able to get some pain relief - ask for a referral to a pain specialist if you haven't already had one. If you are the sort of person who finds it helpful to know about symptoms and diagnostic criteria there's info. about MS here: https://www.mssociety.org.uk/what-is-ms/signs-and-symptoms and here: https://www.mstrust.org.uk/a-z/diagnosis (and if you want to compare, the diagnostic criteria for ME are here: http://www.meassociation.org.uk/wp-content/uploads/2011/07/ICC-short-version.pdf ).
 
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