Limbo and what type?

So I am still in limbo land. Been a little over three months, and I still have some symptoms, with new ones appearring. So far been through a brain and brain stem MRI, both of which were negative. Here are my symptoms:
-Lightheaded upon getting up too fast (happens alot)

  • My hand tingle off and on (and they wake me up at night every night since they fall asleep)
  • my eyes are sensitve to light and hve floaters in both eyes
  • tight right knee that sometimes feels a little weak
  • woke up yesterday with a stiff neck

I have went to 2 opthmalogists who said my eyes are perfectly healthy and I am thinking the floaters and lightsensitivty could be due to inflammation , even though the opth said they see no evidence of it. I am thinking of going for a 3rd opinion.

I have my next neuro appt in 2 months, at which time she said she would look at my back if necessary. What are your thoughts? I am thinking I might have PPMS.

My eye specialist said my floaters and sensative to light is caused by a auto immune disease I also have it in both eyes for a year now hope yours don’t last this long.

Hi Alysea! Thanks for responding. Did they do anything for your eyes? I did talk to one of the opthmalogists who said even if the problems were caused by inflammation, unless they were almost blinding problems they would just wait it out. On top of that they would only do steroids anyways. Let me know! Thanks.

Just steroid drops they did nothing used them for 6 months then stopped they didn’t even tell me what’s wrong just that my sight is normal been under them nor almost a year I even mentioned I may have ON but they said nothing I mentioned them discharging me but he said not until my sight is better, I think I may need IV steroids I’ll mention it when I see neurologist about what he’s going to do to help my sight return to normal.

Yeah I am lucky that whatever I have is not affecting my vision. It’s still perfect other than the light sensitivity. And I am still I undiagnosed so they will not do any steroids whatsoever since it’s not inflammation. You have any other symptoms?

What does anyone else think of my situation?

I do have inflammation had it in my blood and my MRI showed areas of inflammation I can’t walk much due to stiffness I use borrowed crutches and my family help getting daughter to and from school I have bladder and bowel issues bloating too fatique numbness basically all ms symptoms.

been like this a year now used to it but I’ll get better once I have physio and other meds to help.

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Good luck Aly. Like I said, mine have been going on for 3-4 months now. Still in the dx stage. Who knows, maybe it wll be a different inflammation disease.

IMO if both MRIs were negative its highly unlikey you have any form of MS, but I am not a neuro.your symptoms could be anything, pinched nerve even, have you had your blood pressure checked? could cause the light headed problem. The floaters that I keep reading people talking about here are sometimes just normal, not a symptom of anything else, sometimes they can be serious (retinal tear) so worth getting checked out but can also just be a sign of getting older. If you are not hapoy with the MRI results you could always ask about a LP to rule/confirm out things

Well, if you read my posts, it might answer your question. I’ve got all MS symptoms and it’s looking like it isn’t MS. I have lesions but no demyelination . After researching for the last few years, all I can think of is I’ve got either allergic reaction to biological treatment I’m on, or, damage from all the treatment I’ve had in the past.

have a read of my posts and see if it’s similar to yours. Best of luck. I hope you get a diagnosis soon xx

Thanks Faula. I am thinking of asking for a spine MRI, but my neuro said at this point, she doesnt think i need it. She said she would look at it at my next appt end of October, if nothing else comes up.

Any PPMS people here ? Does it sound like it?

what do any PPMS’ers think?

We’ll it finally looks lie my lightheadedness is gone. Been over a week now. Also my hands have not been tingling during the day. Still go to sleep throughout the night though. Also seems like I have had some insomnia past month or two. No problem falling asleep but wake up constantly during the night. Then to top it off think I am coming down with the flu. Everyone at my work has it and seems like it my turn!

Hi J’er,

An Opth can only see a problem in the eye. If the problem is inflammation of your Optic Nerve the only test is an Evoked Potential. They are procedures for measuring the speed of impulses along neurons. Responses can be measured using EEG readings from electrodes attached to the scalp and occasionally other areas of the skin. Although this may sound like something from Frankenstein, they are in fact completely painless and entirely harmless. Based on input signals to the particular sense being measured, the time taken for that response to register can be accurately measured and compared to normal readings. The results are then analysed on a computer and average speeds recorded.

Demyelinated neurons transmit nerve signals slower than non-demyelinated ones and this can be detected with EP tests. Although they may appear to function perfectly, even remyelinated neurons are slower than normal nerves and so historical lesions can be detected in this way.

You’re a long way from knowing what type of MS; it might not even be MS; possible CIS that may leave as quickly as it came. It does sound like some sort of Neurological complaint; don’t waste any more money on eye tests.

Your Neuro will have an MRI test on you make sure you buy a copy. The NHS is the best organisation in the world unfortunately also the most inefficient so if you have a copy they can’t lose it to compare with future MRIs.

Good luck


thanks for the reply!

Think I definitely have the flu. Had a 101 fever the past 2 days. I did get thinking though. None of my “MS” like symptoms were worse when i had the fever , and i hear that is common with ms, so maybe this is not MS. Who knows.