Multiple Sclerosis Community
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12237988 tn?1424206402

not yet dx

  I have no diagnosis yet but alot has been going on and i have a few questions.
My PCP isn't sure what is going on yet but she looking in to it so that's good.

?1 I know that these symptoms could be many different things but any one with experience what might the most likely candidates be. I like to he proactive with my care but it is hard to wade through all of the possibilities.
?2 I am worried about the EMG it sounds horrible is it as bad as it sounds. I like to be prepared :).
?3 I am even more worried about the trigeminal neuralgia coming back. Recently I have had aching in my jaw and it runs along my gums on top. Same side and that is the way it started the first time.

My summary is below ( I use summary loosely as it is looonng)
Please excuse my spelling errors some of those words hard and I'm on my phone :D

For the past few (3 ish) years I have had extreme fatigue and cognitive issues that are always there but some times worse than others. The past two summers I have had weakness from the waist down. Almost constant shoulder, upper back pain and neck pain. I had an episode of trigeminal neuralgia that came with a (needed) root canal the pain lasted about two months and was constant pain that no pain killers could touch and and occasional shocking pain that was much worse. During the trigeminal neuralgia I had a blind spot in my left eye for a few hrs. At the er all they addressed was the pain to which their answer was we don't treat mouth pain they didn't even look at my eye and sent me on my way. I have had tremors in my hands and many times when I felt like my hands were trembling but were not. My hands swell at night but often my hands and feet feel swollen when they are not. I often feel bruised when I have no bruise. For the past day and a half I have had weakness, tingling and tightness/heaviness from my waist down continuously. Also for the past week I have been getting tingling in my hands just the pinky and ring finger. I have headaches that often are migraines though they haven't got too bad recently. For about 6 months I have been on amitryptiline, and escatalipram (lexapro) for what may be fibromyalgia and these have helped with the pain slightly and helped my headaches a lot. I have had recurrent small bowel obstructions (probably 10) since I was about 15 the last one in October when I had surgery to remove scar tissue. I get bad mirganes every time I am in the hospital (3 times in the last year and a half for the small bowel obstructions) I think from the lighting I have photo sensitivity. I had blood tests last year that ruled out rheumatological problems but did show a positive ANA(I don't know the specifics) I know that the positive ANA doesn't mean a problem in and of its self. My PCP has set up an order for more blood testing to include TSH, b12, ESR sedcrate, Lyme, CBC, and CMP w/ Egfr. ( I have no idea what most of those are lol) She's also got an order in for EMG w/Nerve conduct study of lower body. If these all come back normal she's sending me to nuerology.

Any input would be greatly appreciated. Thank you in advance.
2 Responses
987762 tn?1331027953
Hi and welcome,

Could you please try to make smaller text blocks, just like you did in the beginning of your post, many people with MS have visual and or cognitive issues, that makes reading and comprehending large blocks of text quite difficult and it may effect the number of responses you receive - thanks :o)

Firstly all those tests are common blood tests, positive results point towards various medical conditions that can cause some of what you've mentioned, eg ANA and TSH are from my understanding connected to Lupus, ESR is looking for inflammation, B12 is a very common vitamin deficiency, CBC =complete blood count, CMP =comprehensive metabolic panel, Egfr =estimated glomerular filtration rate (i think the = are liver and kidney function?)

Unilateral Trigeminal Neuralgia (TN) is very commonly caused by dental or anaesthetic related medical procedures, bilateral TN is probably one of the few 'bilateral' symptom that is more suggestive of conditions like MS.

So sorry you've experienced TN it's not called suicide pain for nothing, right, i think i'd rather give birth to a 10 kilo baby than go through that again......TN may be part of the big picture but keep in mind it could also be connected to your prior dental or medical procedures too, unfortunately it's not possible to predict if it is ever going to happen again.

The EMG with nerve conductor study is basically looking for abnormal muscle and or abnormalities in your peripheral nervous system. A lot of people are anxious about these tests, though i think it sounds worse than it usually is, this link explains the process very well.........but if you search the topic in the search box above, you'll find other discussions and experiences that may help to relieve your concerns a bit.


Unilateral visual issues such as Optic Neuritis are very suggestive of conditions like MS but you describe experiencing a 'blind spot' which is a description that's difficult to associate with MS. It could be describing something as minor as a visual floater, migraine related visual etc to something more serious like ON.......?

Bilateral hand tremors is possibly related to your chronic pain, medication side effect etc so possibly another symptom that maybe connected to a more common cause. You also mention your hands actually swelling and the sensation of hands and feet swelling but aren't swollen.....physical swelling isn't primarily a symptom of MS, abnormal sensations definitely are but it's more usual to be an abnormal sensory spot/splodge eg wet spot. I can't recall or locate anything to do with MS in relation to a swelling feeling of entire hands and feet, so not sure about this.....

Your symptoms that are from the waist down, are bilateral and possible symmetrical too (exactly the same both sides), is not usually what happens with MS spinal cord lesions, because MS cord lesions are more commonly too small to cut off the cord and produce bilateral symptoms below the lesion location.

You should definitely see a neurologist, although MS is not at the top of the list of bilateral causation, there are other neurologically related conditions eg structural spinal, Traverse Myelitis etc that need to be looked into....i personally think it's 'more likely' to be something other than MS from my understanding, collection of symptoms, description etc but I think something is definitely going on that needs a neurological consult.


ps I know i haven't gone through everything you've mentioned but hopefully some of it will be a little helpful...  

1831849 tn?1383228392
Hiya -

I agree with JJ. You should see a neurologist. The most important part of the MS diagnosis is the clinical exam. A neurologist, preferably an MS specialist, will be able to dectect signs of MS that a PCP cannot.

In addition to the clinical exam you will likely need to have MRI's of your brain, c-spine and t-spine all done with and without a contrast agent.  

Neurological issues can be difficult to sort out. Tere is a large amount of symptom overlap. Specfialists are the most effective way to wade through them.

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