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Old 02-14-2013, 10:07 AM   #1
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Post Long way to go, could I have MS?

Hello Everyone,

I joined this site a few years when I was dx with Sjogren's Syndrome & hypothyroidism, but have never posted just looked in occasionally I live in the UK.

I have had MS related symptoms for a few years now but know that these can also be down to peripheral neuropathy which is a fairly common condition that can accompany Sjogren's Syndrome.

I have been off sick from work for over 5 weeks with B12 deficiency and low iron stores. I have had the B12 injections but dont feel that much better. Although I have had more pins/needles etc since becoming B12 deficient, I have had the majority of these types of symptoms for a few years.

My symptoms are pins-needles (tongue & head), numbness (hands, areas of thigh and feet) ,buzzing (soles of feet) , areas of coldness, including one cold hand one warm. Awful pain all over stabbing burning etc. My memory has become terrible and I am saying wrong words every day not just once but several attempts at getting the right word. I get very brief episodes of confusion and have also had a headache for over 5 weeks that will not go away. I also get muscle spasm in finger/thumb and some leg jerks I also have RLS & terrible fatigue. I also get episodes of dizziness even when sat still. I have severe mid back spasms which make me cry out feels like its locking, my Doctor said rib inflammation.

I am clumsy and have had a few falls one 13 yrs ago staggered in bedroom fell to floor eyes were open and I could only see black for a minute or so, was then in bed for 3 weeks felt very unwell. I have also had a few falls 2 yrs ago out my garden but there are uneven areas and I think that was the reason why?. I am dropping things and just feel that something is not right. My symptoms can be sporadic but for the past 5 weeks they have been more or less present.

I have seen my GP and she has arranged an MRI just to rule out a tumour I believe, although she does not expect to find one. However, I just received a call this AM to say that the consultant radiologist thought that I needed a CT scan instead and I am so annoyed as I feel the MRI is necessary to rule out MS?

I am seeing my GP next week and will speak to her then to ask if I can actually get an MRI as I feel this is necessary but dare not say that I am worried it could be MS as I feel very low and not confident at the moment (not like me). I would welcome any advice and thanks for letting me vent!

Paula

 
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Old 02-14-2013, 06:06 PM   #2
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Re: Long way to go, could I have MS?

Welcome!

Due to your Sjogren's Syndrome & hypothyroidism, have you discussed your MS concerns with the doctor who diagnosed your Sjogren's Syndrome? The site has a board : http://www.healthboards.com/boards/sj-grens-syndrome/ which might be able to answer some of your concerns before you push towards adding MS to your already "full plate". I do not want to come across as dismissive. Symptoms do and can overlap and MS is certainly an equal opportunity disease!

It also sounds like you have ongoing symptoms which are thyroid related. Have you had you had a check-up regarding your thyroid? Sometimes a slight meds tweak can set things on an even keel.

If a tumor is possible, then a CT is what you really need. if nothing is apparent in the CT, then they would likely order an MRI. An MRI does nothing for you regarding the diagnosis of MS except to act as one tool in the diagnostic process.

all in all, I think you appear to be seeing the right doctors. Do not worry about MS. worry and anxiety can produce or cause symptoms to present which can mimic MS and only worsen your situation. I do hope you will visit the board for thyroid and Sjögren's Syndrome. If you need assistance regarding MS, we will gladly help you. Again, welcome!
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Last edited by MSJayhawk; 02-14-2013 at 06:07 PM. Reason: add

 
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Old 02-14-2013, 06:54 PM   #3
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Re: Long way to go, could I have MS?

HI there. Im glad you finally jumped in and decided to write to us! Welcome..

Sounds like you really are juggling alot...and not that you cant have both diseases, but your symptoms could simply by an excaberation of Sjogren's Syndrome and not be MS, but you are correct- without a MRI, they will not know for sure if there are lesions present. Tumors, I have to think probably not- youd have alot more serious symptoms in most cases, but lesions are damage or scars, from attacks on the nervous system.

Its not a bad idea to have the CT scan; however if it shows nothing, push to have the MRI done.

I will share with you that during my very short diagnosis, my doctor thought my symptoms came from a pinched nerve, and also ordered me a CT scan. Fortunately, the radiologist picked up on some abnomalities and called in a Neurologist to look at it before I was allowed to get dressed- that neuro called it correctly and had me in a MRI within the hour...my MS was diagnosed within 24 hours and verified by a MS specialist the following day...so a CT scan, although the wrong test for MS, may very well show something.

Let us know what happens? And whatever we can do for you- we are here.

Nikki
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Old 02-14-2013, 07:38 PM   #4
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Re: Long way to go, could I have MS?

Thank You both for the advice!

My thyroid levels are fine as I have had this checked recently. As I am seeing my GP early next week I will wait and get her advice on whether I should get the CT or wait for the MRI?. I have not seen a Rheumatologist since my dx of Sjogren's around two years ago but I recently asked my GP to re-refer me (altho this can take many months thanks to an ever failing NHS!) as my dryness is getting worse amongst other things! I have a friend with MS and her 1st symptom was that her memory started deteriorating so although my symptoms seem to be similar to that of MS, in my saner moments, I doubt I have MS. However, it will be good to officially rule it out.

I will give an update in due course

Thanks again & Take care

 
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Old 02-14-2013, 08:33 PM   #5
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Re: Long way to go, could I have MS?

I would say since the gears of NHS are grinding towards a CT, get the CT and then ask for an MRI if the CT is clear.
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Old 02-15-2013, 03:55 AM   #6
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Re: Long way to go, could I have MS?

Yes this is my thinking but will wait to see GP to run it by her in case an MRI is not an option if the CT is clear?

 
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Old 02-15-2013, 04:45 AM   #7
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Re: Long way to go, could I have MS?

Brownzebra,
Im sorry, but you seemed to be asking a question, but its not clear what you were asking. You wrote: will wait to see GP to run it by her in case an MRI is not an option if the CT is clear?

Im assuming you are asking if you should run it by the GP...a MRI is always an option and is actually used for very specific purposes, whereas the CT is less specific. There is no reason NOT to have the CT, but you want to make sure if it is clear, that you can get referred for an MRI in a timely manner as well- if its a choice of one or the other, insist on the MRI.

Nikki
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Old 02-15-2013, 05:35 AM   #8
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Re: Long way to go, could I have MS?

Quote:
Originally Posted by brownzebra View Post
Yes this is my thinking but will wait to see GP to run it by her in case an MRI is not an option if the CT is clear?
I do not know how the inner workings of the NHS works, but as a logical chain of events, I would think that a clear CT would be followed by an MRI based on what you have shared with us.
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