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Long list of symptoms

I'm posting in here because I have been having episodes of MS like symptoms and nobody seems to listen or put them together when I go to the doctor.  I am a 24 year old male who is a little bit overweight and decent physical shape.  When I was still in high school, I had numbness in my left foot.  I didn't think much of it since I was playing football and thought it might have been from getting hit.  At the end of last year I started having headaches and twitching on the left side of my face.  The twitching was in my left upper eye lid, left cheek, and left lower lip. I was also having shocking pain and numbness in my tounge.  This lasted for about 4 months. I was seen by my PCP and he sent me to a Neurologist who said it was probably migraines (even though I was not having visual disturbances, sensitivity to light and sound, or any of the normal symptoms of migraines).  He scheduled a MRI at my request, but would not do it with contrast.  The MRI came back normal and he prescribed Topamax for my headaches.  This didn't help and actually caused severe tingling in my feet, which is a side effect of the medication.  About a month after I last saw the neuro, my symptoms cleared up on their own.  Recently, I had a couple of weeks where I had sharp headaches behind my right eye.  Along with the pain, my vision went blurry and it hurt to move my eye around.  These attacks would last for about 10 min and then subside.  Again I saw my PCP who sent me to an Ophthalmologist who gave me a stronger prescription for my glasses, but couldn't explain where the pain was coming from.  Again the headaches went away on their own.  Now I am having problems with urine retention that has caused a bad UTI that is being treated with antibiotics.  I'm frustrated because none of my doctors will listen to me if I mention MS.  Nobody can explain why I am unable to feel when I have to go.  Do any of these symptoms sound like MS?  It is the only thing that I can come up with.  I have spent hours researching the symptoms and episodes.  If it doesn't sound like MS to you, what could it all be?

Thanks in advance for any ideas or suggestions
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147426 tn?1317265632
Hi, The twitching in the face is one of things that really does occur in situations of high stress and tension, which may describe you and your worry about MS.  Preoccupation (worry) can also cause inattention and "brain farts."  I am certainly not saying that either of these are the case, but it is something to consider.

More worrisome is the episode of what sounds like "Glossopharyngeal Neuralgia" which is a nerve pain of the 9th Cranial nerve.  Cranial Nerve Neuralgias, typically Trigeminal Neuralgia, are well described as occurring in MS.  This is the symptom, along with the sudden urinary retention that makes me want to urge you to get a thorough work up.  Both of these, I would say especially the urinary problem demand attention.

The MS in an uncle a second dregree relative does raise your chances of MS but not higher than about 1 in 100.  Also the course of a relative's MS does NOT predict yours, if you should have MS.  AND, as you noted, we have disease modifying therapy now.

As the forum seems to be dealing also with the topic of Lyme disease, you should have testing for the disease that cause neurologic abnormalities, of which Lyme is one.  It can with some frequency cause cranial nerve neuralgias, but typically only of the higher cranial nerves, I thru VII.  Lower nerve involvement is quite rare.

Stay with us and let us know how things are going.  And ask ANY questions you have.  We try to find answers for them all.  Quix
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Avatar universal
Thank you for your response, Quix.  I am glad I found this forum and have been reading through the threads while waiting for someone to respond to my post.

The twitching felt like the muscle was quickly contracting and relaxing.  It would twitch every 15-20 seconds and they were little twitches.  You could see the twitch in my left eye-lid and a little bit of a twitch in my lower lip.  I couldn't really see the twitch in the cheek, but I certainly felt it.  As of right now, the twitching has completely stopped and it lasted about 4-5 months.  

As far as I could tell, there was no pattern to the numbess and shocking in my tounge.  It would last for about 20 seconds and then go away as fast as it started.  I do know that the pain I was feeling in my tounge was nerve pain because I suffer from meralgia paresthetica in my right thigh and have shocking nerve pain frequently.  That is why I was concerned about the feeling in my tounge.  The tounge numbness and pain lasted for about 2 months.  

Now, as for your question on how I would describe myself.  I would have to say that I am deeply worried.  My uncle has been suffering from MS for many years and is now sitting in a nursing home because he can no longer care for himself.  I know that they have traced his episodes back to when he was about my age, but he didn't begin any type of treatment until he was in his 40s.  While he did not present the same symptoms that I have been experiencing, he has has a few of them as the disease has progressed.

I will have to look up the date of the MRI, but I think it was around June - July.

I forgot to add that I have been having "brain farts" a lot since this all started.  Back when I was having the face twitching, my wife and I were supposed to be going to the bank which is just down the road from our house, but I got lost on the way there and couldn't remember where I was.  Also, just tonight, when my wife, my son, and I were driving home from my parent's house, I was on the interstate and spaced out and forgot where I was and almost missed our exit.

I feel like I am making a bigger deal out of this than necessary.  I don't really like seeing the doctor if I don't have to and this isn't helping.  I just want to know if it is something serious or a series of unfortunate ailments.

Thanks again for your help and ideas.  I will look at the link you included and try to make an appointment with a neurologist in my area who has experience with MS.
Miza

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147426 tn?1317265632
Hi, Miza, I'm sorry you went so long without a repsonse from us.  You have some concerning symptoms and it's clear that you are worried.  I read your post a couple of times and the things you are having are not classic for MS, but MS is not known for being a "Classic" disease.  Some of the things you describe like the numbness and twitiching in your face could certainly be migraine aura without headache.  When these events happen, it is very hard to tease out the problem, because the lack of headache can be misleading.  But, it is notable that the Topomax was unhelpful.  

I have several questions to ask, because I'd like more details before I can discuss the possibilities and where you should go next.  

Would you describe the twitching you get on the side of your face?  Is it visible to others?  Does it "distort" your  expression or is it little twiches of the muscles in the face?  Has this continued or worsened?

How often did you get the stabbing jolts of pain in your tongue and does the numbness last very long?  How long did this symptom overall last?

The couple weeks of eye pain and blurry vision are much more concerning.  You need a Visual Evoked Potential VEP to see if there was, indeed, any damage to the optic nerve and if you had a condition known os Optic Neuritis, ON.  

Urinary retention is also serious and if it progresses can actually lead to damage to the kidneys and renal failure, not the mention the UTI you've already had.  UTI's are unusual in young men and should have been worked up THOUROUGHLY when it happened.  Yes, retention is a possible presenting symptom of MS and of other neurologic diseases.

It's an unusual combination of symptoms and you deserve a full work up.  You need to abandon the first neuro, write up all of these symptoms into a concise and easy to read Timeline and see a new neurologist.  Even if it is not MS, and I have NO idea what it is, you need some in depth testing.

At the minimum you need an MRI of the brain and spinal cord both with and without contrast.  If the recent eye symptoms were an episode of Optic Neuritis then you need the contrast to show a new lesion on the optic nerve. You need an VEP.  You need a thourough exam by a urologist which may very well include urodynamic studies, which look at how well the bladder fills and empties and how well you are able to empty it and perceive it being full.

The episodes of jabbing pain in your tongue may have been a cranial nerve neuralgia which is not uncommonly associated with an attack of MS.  The facial twitching may be a form of something called "hemifacial spasm" which can also be seen in MS.  So I believe your concerns are justified.  

It's too bad when young adults are dismissed with complaints like yours.  The things you describe are not typical of an overanxious type, nor one who is convinced that every odd sensation they have is a sign of impending doom (the hypochondriac).  I do have a question, though, and it will not color my perception of what you told us.  Would you describe youself as having very high health anxiety in general, or is it a deep worry about the things your are experiencing?

I hope after all this time, you are still reading the forum.  I think you should look for a new neurologist with a large practice in MS.  When you see them you should present your symptoms in a timeline fashion and not suggest that you are worried about MS.  The doctor should do a thorough neuro exam ( a good one takes at least half an hour) and should have a definite plan to work you up.  BTW - when was the first MRI without contrast?

One way to find a neurologist that sees a large number of MS patients  is to contact your local chapter of the National MS Society.  I'll put the link below to find your chapter.  These doctors need to be as good at ruling out MS as they are in diagnosing it.

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_FIND_homepage&JServSessionIdr011=g819givlv1.app17a

I hope you see this and that it helps.  Good luck, and I'll be looking for your answers, Quix
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Avatar universal
Hi - I've had the eye pain and blurry (colours seem different) pulling sensations (feeling of eyes wanting to go bosseyed.  I went to my doctor and asked for steriods as if it was optic neuritus (something people with ms get)  then there is a possibility of going blind all but temp but I'd rather not take the risk.  I also have a really weird jumping vision but the last attack I had which was about 4 weeks ago made the jumping vision much worse.  I am undiagnosed with anything just like you..  I am going for another scan in a couple of weeks time.  I have told them about bladder problems I have but my neuro just wrote a letter to my doctor where he didn't even mention it.  He thinks I have only had the problem with my eyes in the last 8 years.  If you want to talk to someone my email address is ***@**** -  Lately I am getting very bad headaches,  If I wake up with one then I am stuck with it all day usually.  Oh and a numb right foot which aches when I get stressed or really tired.  I am stuck with the eye problems jumping vision possibly called nystagmus but it is starting to ease off a bit.  I also asked my doctor for a repeat perscription of antibiotics for all the bladder infections I get.  Believe me this wasn't easy and it took years to actually get it.  Ask to take a low dose antibiotic every day to keep the infections at bay... or just take them when you get one.
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