suspect MS need advice

New diagnosis and before diagnosis
1

Hello!

I will try to keep this as short as possible. A little over a year ago I started to experience symptoms that were MS related. For the first month it was so bad I had to drop out of college. After about a month most of the symptoms went away except fatigue. This cycle of having new symptoms and them going away but some staying and varying in intensity has been going on for a little over a year. I experience about every symptom that is associated with MS, fatigue, vision problems, numbness and tingling in legs, arms, and hands, balance issues, spasticity, pain, memory and focus challenges, occasional speech problems, tremors, mild hearing loss, breathing trouble, and even lhermitte’s sign. I finally made t to the doctor a few weeks ago, just a regular general neurologist. He ordered me a brain MRI regular and with contrast. It came back normal and that is my problem. I am 90% positive the machine was a T1.5 which I’ve read is crap for finding lesions and diagnosing. I’m not sure why he didn’t order a spinal mri or lumbar puncture but I’ve not had those. I’ve had several things ruled out for diagnosis some being chrones, vitamin b deficiency, celiacs, syphllis, and HIV. I don’t know what to do next. I’d like to see a MS specialist and there is one in my area. I’m wondering if he would want another Brain MRI and order the other tests mentioned above. But I’m also wondering wether seeing an MS specialist is worth it. I believe it’s possible that I have MS, but the brain mri is confusing me. I know that none of you can diagnose me so I’m seeking advice and opinions on what my next move should be. In addition to that, has anyone been diagnosed with MS with a normal brain mri, or have experience getting more than one brain MRI, where one was normal and others showed lesions? Any thoughts and advice are welcome. Thank you!!

2

Hello

I had an MRI a few weeks ago and asked the radiologist about the difference in the 1.5 Tesla machines versus the 3T MRIs.

He said that the 3T machines do one of two things, they either do exactly the same scan as the 1.5 machine, just quicker, or they do a more detailed scan, but that requires different skills to read the results.

So even if you have a 3T MRI, you are actually likely to end up having the same test as you do with a 1.5. And most of the 3T machines are in specialist centres rather than your local hospital.

He assured me that a 1.5 Tesla MRI, especially done with contrast is able to pick up the littlest lesions. And in fact, although it wasn’t expected that I’d have new lesions (having been reclassified as secondary progressive), it did pick up 2 new little enhancing lesions.

You may have a point about not having had a spinal MRI, but many of the symptoms you mention would be caused by brain lesions rather than spinal. There being no brain lesions seems to indicate that a spinal MRI would be unnecessary.

So I suspect that the neurologist, having done a physical exam, taken a history from you, and having the results of an MRI of the brain is fairly reasonably convinced that you don’t have MS. And a regular general neurologist is quite capable of spotting typical signs of MS, they might not be specialists, but they are still neurologists. And MS isn’t so uncommon that they wouldn’t know what to look for.

Can I be honest? It is really quite unusual to have ‘about every symptom that is associated with MS’. Most of us have a random selection, not all of them. It’s also not necessarily a good idea to read up on a diagnosis and then fit your symptoms into it. Doctors generally see a patient, look at their symptoms, do tests as appropriate for those symptoms, and then work out what might be causing the symptoms. They don’t start with the diagnosis, regardless of the number of symptoms that fit a given disease. There are many, many diagnoses which share symptoms with MS, even vitamin deficiencies.

I would suggest that you go back to your GP, talk over what has happened to you, discuss what you think has caused the symptoms and see what s/he thinks. If necessary, you could be referred elsewhere, or have some blood tests, even sent to a different neurologist, if that’s what your GP thinks is appropriate.

Best of luck.

Sue

3

My neuro done the same thing. He done a head MRI but didn’t bother with a spine MRI and as the head one came back completely normal, I got sent away with no answers. My symptoms are still on going and are currently worse then normal, i believe that there is still the Possibility of me having MS. I don’t want it but if they can help with medication I’d like a diagnosis of something. I too have a lot of the symptoms, not all of them but quite a lot.

4

chloe and claire

you should both go back to your GPs and ask for help with the symptoms.

the gp is the person who can refer you to the relevant specialists.

it can take a long time, so settle in for the long haul.

you need to distract yourself with a good book, film, company, gin!

keep strong and hold on there.

5

hey thanks for the response!

The problem is is I don’t have a GP. I’m 21 and I don’t really see a pediatrician regularly anymore only when I have a bad cold or small issue. My old pediatrician I have stopped seeing because I went to him with about half of my symptoms a year ago and he dismissed me saying it was all in my head and I needed to up my antidepressants and I left that appointment crying and distrustful of any doctor. I could go to the lady pediatrician at his office that I occasionally see I guess?

6

Can you register with a GP rather than a pediatrician? They might be better placed to look at you in the light of your symptoms which might be more common in adults than children. After all, at the age of 21, surely you’d be better off seeing a GP? Are you from outside the U.K.? Obviously, you could as you say see the alternate pediatrician rather than your normal doctor. It doesn’t sound as though he’s particularly good at neurological issues. Increasing antidepressants seems like covering up the problems rather than seeking an answer to them. But that’s just me, it’s an opinion, not a medical view.

Sue