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Newly Diagnosed, Symptoms and MRI with GAD

Hi there,

I hope everyone is OK.

I would like to ask for some help and advice please (again :))?

I was newly diagnosed with MS (negative bands) in January, I have been trying to deal with this and carry on - so to speak. However, since then I have had 3 new significant symptoms - it appears they like to pop up once a month!

  1. Electric shock and weakness in left leg (Jan)

  2. Trigeminal Neuralgia with facial numbness (Feb)

  3. Some blurred/double vision in left eye which also struggles to open (March)

I don’t know whether these are true relapses or just symptoms I have to get used to. I do seem to get better before the next one starts, i.e. starting physio for weakness, medication for TN and waiting to see what happens with my eye. I feel like at the moment I am taking one small step forward and another symptom will come up - TN being the worst so far.

The next steps are a MRI with GAD - although I have been dealing with symptoms for 6 months now, I always feel like I have to explain my situation due to negative bands or feel like I am not being entirely believed …

Sorry for the rant, but I don’t know what to do. People say to put everything to one side and let the neuro’s sort it out as it will not help the MS (which I know), but it is really difficult.

Many thanks just for listening/reading.

S

Hi

It sounds like relapses or me. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/relapse

This page from the MS Trust explains that a relapse is a new symptom or a repeated symptom more than a month after the last occurrence which lasts for at least 24 hours. If these symptoms are lasting longer than 24 hours then to my m8nd they are likely to be classed as relapses.

It is really difficult to sort out real symptoms, different symptoms, what is and what isn’t a relapse when you are newly diagnosed. As well as trying to sort all this lot out, you are also coping with then emotional fallout of the diagnosis.

Have you been assigned an MS nurse? If not, try to find out who you should be referred to. (You could phone your neurologists secretary to ask.) S/he should be able to help you sort these questions out.

I assume once you’ve had your next MRI, you’ll then have the conversation about potentially starting a disease modifying drug (DMD). Again, that’s a discussion you could have with an MS nurse. If you are having quite frequent relapses, you should think seriously about getting on a DMD soon.

Best of luck

Sue

Hello Enxsjp, if I may ask, what do you mean by electric shocks in your left leg? How would you describe the sensation, as well as the weakness? Take care, and check your vitamin D levels :slight_smile: Blue Marble

Thanks Sue, you are a source of invaluable help as always. I have a MS nurse - who is brilliant - and I have updated her on every step of the situation. We have discussed DMD’s too, so more aware of their benefits and side effects. I guess I wanted/needed other peoples’ opinion and experiences. The doctors keep saying, “ Are you having a flare?” when I look at them with a blank face it’s on to the next question. It’s all very new and I guess the MRI with GAD is the next step. Just so much to take in and try to get yourself better at the same time. I haven’t been into work for 6 months and although I work from home, I’m craving normality and office gossip! I guess it just takes a bit of time.

Hi Blue Marble - the pain was very sudden, out of nowhere and from my hip to my toes - the kind that jolts you back. I thought I had trapped something, but then I couldn’t bear any weight on the leg for the remainder of the evening. I had to be carried downstairs. A week later both legs gave way in the kitchen - again thought it was a twinge, but obviously was wrong! I have weekly physio to start rehabilitation, but there is some loss of sensation in that leg as well as my left side of my face. WRT vitamin D - I haven’t had my levels checked yet, although I feel I have had every test under the sun the last few months. I have now been advised to get 5000mg but everywhere seems to sell it in small doses - any idea where I can get more please? Again, I really appreciate everyone’s help on the forum. Best wishes, S

I get my Vitamin D from a website whose name rhymes with Gamathon! And I take 5000iu per day. If you start on that dose, make sure you have your levels checked within a few weeks/months to make sure you’re not overdoing it.

Sue

Thanks Sue! I will try that :slight_smile: