What to do next?

New diagnosis and before diagnosis
1

Hi there,

Six-month lurker, first-time poster here! In a nutshell, I’ve just had a clear spinal (thoracic, lumbar and cervical) MRI and had a clear brain MRI in September, but a range of symptoms with no explanation. Wondering if anyone had any advice on next steps ahead of my doctor’s meeting next week that I could suggest.

Symptoms began in June with a week of restless legs and cramp, and then my right knee gave in and I fell. For the following five weeks I had right-sided weakness, vertigo, pins and needles (and in hands that would wake me up at night), sweating and overheating frequently, the sensation of ‘jumpy eyes’ when walking, heavy legs, incredible fatigue and struggled to walk well.

I started to feel a bit better and some symptoms sub but I’ve been left with a numb right foot, numbness down both shins and now I can’t tell hot temperatures on feet or shins, and reduced sexual sensation almost to the point where I feel nothing. I have hand tremors quite often and still have brisk reflexes in both knees.

My nerve conduction test was negative, all blood work has been normal (some things low, but not low enough to be deficient although I take a multivitamin on suggestion of my doctor), and now clear MRIs, but the numbness, tremors, fatigue, pins and needles/cramping hands at night, itching to the point of drawing blood during that first five weeks of weird symptoms, overheating and sweating are still here six months on. Hot showers are hellish and make things feel ten times worse, and I’ve had to have a lay down after showering because I feel so exhausted/weak/weird.

Any recommendations on next steps or things that might mimic MS symptoms? I sometimes get a weird knee rash that a few doctors have suggested might be a gluten rash (dermatitis herpetiformis), but haven’t been able to get it biopsied due to appointments taking forever and me needing to have the rash at the appointment, which seems impossible to sort out - celiac blood tests have come back negative, but apparently the DH rash doesn’t flag on a blood test.

I am at a complete loss, so if anyone has any helpful insight I’d be all ears. I’m 38 year old woman, by the way, if that’s useful to know - other medical things include unexplained deafness over past few years and now have hearing aids (often get a fluttering sensation inside ears), feel very full very quickly, weird skin crawling sensations and tightness around rib cage/right breast side (had breast ultrasound, all clear) and electric shock sensations in back of head sometimes. Never been to the doctor’s so many times in my life, it’s very frustrating.

Thank you

2

Hi

Hope you’re holding up ok. Not nice floating around in the diagnosis waiting room world

Wondering if your MRI’s have been without contrast?

Having lesions in your MRI doesn’t get you diagnosed either, or at least, it hasn’t with me

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3

Hi, thanks for the reply! I’m doing alright thanks, how are you?

All MRIs have been without contrast. I did ask my neuro if he could do the spinal one with contrast and he told me there was no need and that he thought my two years of gymnastics from age 8-10 probably caused wear and tear in my back that has in turn caused my symptoms!

I was also recently tested for Lyme disease and that came back negative.

I’m tempted to get a second opinion from a different neuro once I get my MRI report back as there is something causing these physical symptoms, it can’t just be wear and tear and them leaving me to have numbness for the rest of my life :rofl::woman_facepalming:t2:

Would it be worth asking about MRIs with contrast, do you think? These problems have only existed for around six months, so no idea if they’re too new for anything to be picked up or if it genuinely wouldn’t make any difference.

Thanks so much

4

You have almost the opposite of my situation.
I have many lesions on the brain MRI and spine plus a positive lumbar puncture for the presence of the protein but the doc won’t diagnose me yet because my symptoms don’t fit :man_facepalming:

Anyway the thing is, lesions don’t always show up in MRI scans. More likely to with contrast but still they might not.

Have you had a lumbar puncture?

5

I’d be tempted to ask for a lumbar puncture, because they can pick up traces from previous relapses if you have had any. It’s your mentioning of a shower that raises a flag for me, I know that early in the 20th century the way they diagnosed MS was by putting the person in a bath of hot water and then watching them trying to get out and walk around afterwards. The effect of heat on MS is known as Uhtoff’s phenomenon, and they really only see it in patients with MS.

Do you know if the consultant that you’re seeing is a neurologist with specialisms in MS? If they’re not then it may be worth seeing if you can see a different one. I know that most of the local support groups that the MS Society help fund have got Pages on Facebook, you could try asking in one of those groups who the consultant neurologists are that the people local to you are seeing.

I also read an article earlier on in the Guardian, and High levels of vitamin B6 can cause all sorts of problems very similar to peripheral neuropathy and even Motor neuron disease. I copied and pasted the article and posted it on a topic in one of the forums. It might be completely irrelevant so feel very free to ignore it!!

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Oh wow, that sounds incredibly frustrating. I don’t know anything about the medical world but it seems strange they won’t give you a diagnosis if you have the hard evidence there but none of the physical symptoms? Or is that a criteria they have to satisfy?

No lumbar puncture here, just head and spinal MRIs (and a CT scan as my father died from a brain tumour when I was a kid, so they wanted to check there was nothing like that going on), and a lot of blood tests to check for various things like Lyme, diabetes, b12 etc. Where are you at in your journey now? Do you have to return for check ups and see if there are changes?

7

Hi,

Thanks for the advice, that’s interesting. I love hot baths but haven’t had one in months as the hot showers have put me off trying.

The neuro I saw was specialised in Parkinson’s, but was incredibly dismissive of my case and said he didn’t think there was anything wrong with me. He thought I’d probably injured my back at some point, but the MRI is apparently clear with no sign of back injury (waiting for the letter to arrive so that I can read it in full, but the receptionist read me the conclusion, which was clear MRI).

My vitamin levels are all normal or satisfactory, I’ve had a few full blood tests to rule out things like Lyme disease, b12 deficiency and anaemia etc - initially b12 and iron were low but not deficient, so I’ve been supplementing and levels were better at my last blood test.

Will do some digging about lumbar punctures and heat so maybe can discuss with my GP when I go next week. The appointment is because the MRI came back clear, so I called straight away and asked if there’s any other things we should check as I can feel in my gut that something is wrong, but so far nothing we’ve checked has given any answers.

Thanks again, I appreciate it!

8

I have what I’d consider symptoms. Everyday is constant pain - head, eyes, legs feet mainly plus I randomly get stabbed (that’s how it feels) in odd places. I also really struggle with short term memory. I don’t seem to have the ‘normal’ MS symptoms but do fit the McDonald criteria.
Journey? I’ve had all the MRI’s repeated normal and with contrast just before Christmas and awaiting the results.
For me, I just want to know what it is so I can move on.

Lumbar puncture is a must in my view and not only for the tell tale protein for MS but also shows up other potentials that may have been missed from your bloods, although it does seem to be a potential reason as to why I have a constant dull ache in my lower back now :man_shrugging:t3:

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I know you want answers - of course you do - and I understand your frustration. They do say that time is the best diagnostician, and when things have reached a stalemate it can be worth considering just stepping back for a bit.

It’s weary work trying to change doctors’ minds without new and (to them) more compelling evidence. If you do have MS it will probably rear its ugly head sooner or later and in a way that shows up on their nice scans.

If you do just need a break from it, some strategic watchful waiting is an option.

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Hi, apart from 3 lesions in my brain - nothing to do with MS, result of some spectacular concussions I gave myself growing up - my brain/spinal MRIs were clear, visually evoked potentials showed signs of Optic Neuritis in the past, lumbar puncture showed positive oligoclonal bands, evoked potentials were normal. Weird symptoms, the neuro decided to wait and see if anything else (ie. relapse) happened. 9 years later, and some really annoying bladder issues later, a spinal MRI showed 4 lesions, no new lesions on brain MRI.

See if the Neuro will go for annual reviews, and keep a detailed symptom diary so you can checked at each review if anything has changed. Also, annual MRI’s would be useful.

11

Hi Theresa,

Thanks for your message - all of the messages on here have been really thoughtful and useful, I really appreciate it.

Oh man, that’s a long ol’ wait isn’t it. I think that might be my likely next step - only problem is I want something to help with the numbness/sensation loss, but my neuro said there’s nothing he can do about that. I’ve also had terrible tremors in my hands throughout December that weren’t there when I had my neuro appt in early November, so will see what my GP thinks we should do.

Good advice on the symptom list, I have a long-running note on my phone that has been growing since the end of June :rofl::woman_facepalming:t2:

All the best,

Martha

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An interesting update if anyone’s following this thread — my MRI spine results came back clear, so I just had a meeting with my GP to discuss what to do next.

He is booking me a bunch of tests to see if we can get answers for any of the problems individually - bladder scan for urinary frequency, repeat of nerve conduction studies and one that focusses on possible tarsal tunnel, a hearing test repeat to see if that got worse, meeting with gyno for loss of sexual sensation and an EMG test (the one where they put a needle into the muscle, not just give you the little shocks). He said if nothing comes back from those, he will refer me to a specialist for a second opinion as he thinks something’s going on - it’s MS “on paper” but without lesions on a scan there’s nothing more we can do and no treatment available. Happy to try anything at this point, just want something to help the numbness!

Thanks x

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