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Worried

I am very worried last year I started to have double vision, I went to my opticians and told them about my sight, they got in touch with my doctor who then put me forward to the eye clinic. They gave me a plastic prism which made me see better. Then I went back to the hospital again a few months later where the doctor asked me to have an MRI which I had then a few weeks later I was asked to see a neurologist, I didn’t know why. He said that I have legios’s in my brain and that I need an spinal tap and blood test. Then I got a letter saying that I had forth something palsy and white matter demyelinating disease like legion’s in my brain. I have looked at websites and they all come up for multiple sclerosis as the most common. I have had pain in my hip for weeks now and before that pain in my ankle and knees I get very dizzy and light headed plus pins and needles in my left hand. I also find that when I have fallen over I can’t get back up without help this has been going on for years. I have two autoimmune diseases celiac and underactive thyroid which I have been diagnosed a few years ago. Please help

Hello Kay

Oh dear, you have got the lot haven’t you, coeliac disease and AI thyroid, and now possible MS.

The Lumbar Puncture will possibly put the indecision to rest. What the neurologist is looking for is ‘Oligoclonal bands’ in your cerebrospinal fluid that are not present in blood. Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture

There is a strong possibility that the presence of one autoimmune disorder can make you more likely to have another. (Now isn’t that lucky?)

Hopefully the LP will be negative. And maybe you’ve had a one off experience. But it sounds as though you may be working up towards a diagnosis of MS.

I am sorry. Feel free to post questions and thoughts as they arise on here. We will do our best to help.

Sue

I have had quite a bit of I’ll health in the last twelve years thrombosis, hysterectomy at fourth, two broken bones in my foot plus a chipped bone and last year I had an gallbladder operation which went wrong and was in hospital for ten days. So this is why I am upset and worried. I have only told my mum as it isn’t confirmed so I can only talk to my mum about it

I have found that reading about other people who have or are going through the same thing puts it in a better light and sound as if they have got it worse makes me feel bad for them, makes me think that I am not so bad and what am I worried about. But that is human nature for you. I know the doctor tells you not to google it but I want to know? I don’t want to put my head in the sand and think everything is fine. Kay

I’m not surprised you’ve kept this worry to just you and your mum. People would start thinking you’re the equivalent of Typhoid Mary or something!!

Personally, I’m in the multiple autoimmune group too, with having had overactive AI thyroid disease (now underactive following surgery), MS for almost 22 years and it’s believed AI liver disease too - it doesn’t cause ongoing problems, but has a tendency to throw a hissy fit when a drug is filtered through it that it doesn’t like. Luckily, it doesn’t have a problem with gin!

There certainly are groups of autoimmune diseases that go together, ie that you may be more susceptible to other AI disorders within that group if you have one of them. There is a very strong connection between MS and AI thyroid disease; both Graves Disease which leads to overactive thyroid (which I had), and Hashimotos, underactive thyroid (is that your diagnosis?) I didn’t realise that coeliac was in the same group, but it’s possible. The others that I know about in the same group are Rheumatoid Arthritis, Scleroderma, AI liver disease and Sjögrens Syndrome.

Coeliac disease (imo) is bloody horrible. My brother has a very bad case of coeliac. He’s had it since the age of 2, and back in our childhood, the only available gluten free food was disgusting. The bread especially. I do hope you’ve not been a sufferer for as long as him (he 54 now!).

If you are turning to google for info about MS, try to stick to the best and most accurate places, the MSS has lots of information on the About MS section of this website. Another brilliant one is the MS Trust. You can type virtually anything as a search term along with MS Trust and you’ll find a good source of information. This forum is of course another good source of anecdotal information. Just remember, we aren’t infallible. We can only go by our own experience. And while we’ll do our best to help out with questions, queries and just support, we aren’t experts.

And don’t worry about people who are worse than you, no one judges anyone else. It’s a scary thing to be investigated for MS. Conjures up images of severe disability and wheelchairs. Neither of which are quite so likely nowadays because the majority of people are diagnosed with relapsing remitting MS, and for that there are disease modifying drugs available which limit relapses and their severity.

All the best.

Sue

I have been reading a lot of the posts for the last few days, and have found that Ms is so different from one person to another. I have also found that my symptoms change one day to the next. I am on fluextine (;PROSAIC) , but not for pain, it was for my hot sweats I had they were really bad I have had them for years I was wondering whether you get hot sweats from ms as I have had them since I was forty Before my hysterectomy, the doctor gave me to take 1 prosaic once a day nothing then I was told to take two per day which worked but I had lots of jurks and I thought that it was from the tablets. They feel like when you are half asleep and your whole body jurks, this happened for a while but I didn’t get it as much now plus when I took one tablet a day. The pain I have is in my hip and even though I take cocodamal 30 for sciatica and back painit doesn’t make it go away I take anatriptlyn for pain as well and that is for pain but I take 50 mil a night. Is there anything that the doctor can percribe which may be better I also take statins antibiotics aspirin imodin two a day this is from my cealaic with the coco and imodin I’m still not consepated at the moment I am not sleeping well and waking up tired. So l have had a lot of things wrong with me lol and I don’t know which symptoms are from one thing or another because as a lot of you have said that it could take years to dx. Although it was my eye Dr who asked for an MRI then out of the blue I got appointment to the neroligest, he gave me tests which I didn’t know why otherwise I would have told him about my falls and that I feel wobbly also that I fine that I don’t have the strength in my legs to stand up. My dad who was 80 could get up and down from the floor with ease. I had a lot of symptoms from my cealaic that could have been from MS not able to walk around very far without getting tired. So as you can see because I have had a lot of things wrong with me. I have had my oveies out and I have had hot flushes before they were taken, plus I have been on HRT but taken off because of the superficial thrombosis. Now I have the waiting game for the MRI which is due in February the lumber puncher and blood test any time now also I have another appointment with the neroligest in early April. So this is me and my life at the moment waiting Kay

The dreaded letter has arrived, so I now have a time and date for my lp 24th of January. Trying to find it on the mat that they didn’t provide one that I downloaded I have found that it is not to far to walk from the tram stop. But I don’t know how I will feel afterwards any help on that should I go back the same way on public transport (as the parking is bad and expensive) or getting a taxi, its times like these that I miss my dad he was great, I miss him bad anyway, otherwise i have to ask my sister in law and would have to explain what’s going on. Kay

Hello Kay

The Lumbar Puncture sounds more nerve wracking than it is. What they do is numb your back and then insert a small needle in between a couple of vertebrae in order to get a sample of the cerebrospinal fluid. At the same time they’ll do a blood test. What they are particularly looking for is what’s called Oligoclonal bands in the CFS but not in the blood. About 80 - 95% of people with MS test positive for O bands.

You should make sure you are able to lay flat for at least an hour or two after the LP. Also, drink lots of caffeinated drinks. Like full strength coke (the sugar helps too). Take a bendy straw so you can keep drinking while laying down. The point of the laying down and the coke is to avoid a seriously nasty headache.

Have a look at https://www.mstrust.org.uk/a-z/lumbar-puncture

In terms of whether to get a taxi or the tram, that depends on how long you’ve been able to stay laying flat after the test, and also on how you feel. If you’ve stayed in the same position for a couple of hours and feel ok, then get the tram and lay down again when you get home. But if you’ve not been given the time to stay laid down or feel rough, then get a cab.

All the best for the 24th.

Sue