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Avatar universal

If not MS - what?

Symptoms from the last 20 years that I basically dismissed or did not consider related :
uveitus in one eye and very sick for a month; blurry vision that comes and goes, lost vision in one eye for 30 minutes 20 years ago (Dr. said it was probably migraine); stumbling, balance issues,  gait issues focused on left leg, stabbing pains in right ribs for week or so 3 years ago, muscle spasms and squeezing sensation in ribs on right side 2 years ago that lasted week or more with flu like body aches no fever, buzzing in head, optic migraines with no pain just "waterfall vision" or "snowflake vision", toes and bottom of feet numb and turn blue, 2 years ago inflamed nerve in left foot ( Morton's neuroma)  treated with corto. shot - still bothers me occasionally.

Then a year ago developed dizziness, difficulty swallowing, choking on food and liquids, balance issues, burning pain in right side, and tinnitus left side only.

9 months ago ended up in ER with - severe dizzy spell, snowy vision, numbness on left side of face, neck pressure, tingling in left hand. All ER tests showed nothing- no stroke , no lesions, I'm good to go!!!! Right?

The neck pressure increased and for 3 weeks I felt like I was being choked on one side.  While waiting for Neuro. appointment, allergist put me on month course of Medrol for severe sinusitis and return of nasal polyps-- and my symptoms eventually got better. My swallowing issues have also gone away-- thank God- that was really scary.

I've seen 3 neurologists - 2 who only talked to me for 15 minutes and looked at my MRI results-- and they all think I MAY have had a hemiplegic migraine but they will not write that down as a diagnosis.  

Right now- after 9 months of doctors, tests and waiting--- I have numbness on left side of face and neck that comes and goes, a small patch above upper lip that sometimes feels cold and wet when it's not, dizziness, balance off, numb, burning patches around right knee and left thigh, nagging, burning pain in right ribs that persists and sometimes I have "bee sting" like burst of pain in ribs (use a Lidoderm patch and this helps only as long as I'm wearing the patch- take it off for 12 hours- pain is back).  

I have had barium swallow x ray of esophagus, lower GI X-ray, MRI and MRA of head and neck-  all fine.  :- )
MRI of T-spine  showed 2 hemangiomas ( benign cysts) and a thin hyper intense white mark at T 8/9 -- dr. said "don't worry about it." I have normal reflexes in right leg and ankle-- almost no reflexes at all on left leg and ankle- doctor has to whack me 3-4 times to get left leg  to move- barely.    

2 months ago had gallbladder out  ( polyps were found in neck of gallbladder and hida scan showed it was functioning at borderline level).  I was hoping gallbladder removal would solve right rib pain issue.  It did not.  GEEZ!

Okay- I am dealing with the dizziness, balance issues, numb face and neck, etc.  I'm ALMOST getting used to it.  But the rib pain is very concerning since no doctor has yet to determine what is causing it.  Neuro. now wants to do CT chest scan.  I want MRI chest scan as I am concerned about any more radiation.  Waiting to see if he will do this. That is where I am right now.
No where!!!

Please-- has anyone in their research, experience, in discussing with others these things---- does this sound like MS (with no brain or neck lesions) or something else?  In reading posts here--  it seems you all know so much- not just about MS but other illnesses that present in similar ways since you have been through this long process of finding out "what the heck is it?"  If this isn't MS-- what can it be??
Any thoughts or ideas about where I should go next would be so appreciated.
I'm losing patience, a lot of sleep and hope.


8 Responses
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987762 tn?1671273328
COMMUNITY LEADER
Hey questioning is not a bad thing, I understand the need to question but keep in mind, that if getting answers doesn't provide the reassurance and makes you think of even more worrisome questions and you're only continuing to get more and more concerned, then you may need to rethink what benefit your getting out of the questioning.

Anxiety in general creates unreasonable fears but if the anxiety is centred on a persons health, then it can cause sx's that mimic the condition they are concerned about. Although its hard to believe, psychological issues can even cause localised pain, muscle twitches/spasms, sensory sx's eg numbness, seizure like episodes etc etc

It's important to understand that even when sx's are caused by health anxiety, the person experiencing it is 'not' consciously creating the sx's and unlike physically caused sx's, mental distraction interrupts and effectively stops it whilst their mind is focused on something else. That difference is one of the key components on what people can actively try, with the goal being to reduce their attention of the distressing sx(s), whilst minimising their exposure to anything that exacerbates their anxiety.

Distraction techniques are commonly used by people with physically caused sx's too, although it doesn't alter the sx behaviour it's self, because the sx persists despite what they are doing or thinking but it actually is best for your overall mental well being, to not overly think things and let it mess up you head space, MS is hard enough as it is. A lot of the medication for mental health are used off label, for conditions that cause nerve pain, spasms etc so please don't automatically discount the additional 'benefits' these types of medications have.

Spinal cord lesion are known to cause the 'hug' in MS, but there are other explanations too and sometimes they just can't work out the cause which makes it idiopathic, sort of the same as saying...... yes x is physically happening but we can't determine the why. You describe the ribs as burning and bee sting bursts of pain, generally the 'MS hug' is described more commonly like a banding feeling, that's annoyingly uncomfortable to the very painful intercostal muscle spasms but what you've described to me sounds more consistent with nerve pain and if the Lidoderm patch is helping, that could also indicate it's cause is more likely nerve.  

At the end of this rather long post, even if you don't get an exact explanation of why, do what ever is necessary to find what helps you the most, it will never be a bad thing to reduce anxiety and stress but if the Lidoderm patch works for you then maybe continue with it or consider alternative treatment plans until you find the one that works best for you.

Cheers...........JJ

PS that's great news about your husband!  
Helpful - 0
667078 tn?1316000935
CT scans are good they used to have to do exploratory surgery. They are fast. I like them better than MRI which you have to be so still for. Good luck. I hope they find something and you get an answer.

I am doing well I have chemo tomorrow but it is killing the cancer.

Alex
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Avatar universal
Alex-  Thanks for responding.  So- at age 53- I suppose 1 CT so far is not anything to panic about.
Good to know about the 8 in a lifetime thing.  That's what I'll tell myself Friday while getting it done.  I need answers and this seems to be the only way I'm going to get them.  
Thank you.
Hope you're doing well!!  
Helpful - 0
667078 tn?1316000935
I have to have CT scans all the time for cancer. They recommend no more than 8 in a life time. I have passed that.  I am not really worried about it since the benefit out ways the risk.

Alex
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Avatar universal
Thanks very much for taking the time to give me your thoughts. I appreciate your honesty a great deal.  
I'm really at a loss as to what to do next.

JJ--  One doctor did suggest an anti-anxiety med. to see if this would take away the numbness and tingling in face and neck.  I haven't tried it yet-- not comfortable with the possible side effects that might cause other issues I don't need. Hoping to get answer for rib pain and then this would take care of the numbness if it is anxiety related.
The past 3 years or so have been way more stressful for my family than the whole rest of my life has been.  (Guess I should look at that as a blessing.)  So if stress is playing havoc with my physical health-- maybe the CT scan will only serve to put my health concerns to rest.  Who knows anymore.

Any suggestions on the CT scan?  As you can tell, I'm a person who questions EVERYTHING-- I know it can be a bit annoying.
I'm worried about the additional excessive exposure to radiation.
Any of you had one or know anything about them?
I asked 2 doctors if the CT  of chest to look at ribs, lungs, etc. was necessary and if some other test would give us the same answers-- they brushed me off- said the radiation was of no concern and the benefits of the results outweigh the risks.  But, I mean, really- what else are they going to say? Trust issues?  Um, yeah.

JJ- yes- my husband is still cancer free- but that  worry does take an emotional toll.  Honestly- how many families are not dealing with this type of thing these days.  But for now- he's good and we're grateful. He goes next month for his 3rd and hopefully last yearly screening- if this one comes back clean- he should be out of the risky zone.  

All- Thanks again for you input.  The support you guys provide for each other and those of us with concerns and questions is a wonderful thing.  
Helpful - 0
667078 tn?1316000935
You can google MS mimics and see if anything looks familiar. I have no clue.

Alex
Helpful - 0
1831849 tn?1383228392
I have to agree with JJ. I too had 20 years of unexplained, "unrelated" symptoms. However when I had MRI's of my brain and c&t-spine, I had lesions in all 3 areas, several of which enhanced in the presence of contrast.

The T-8/9 abnormality found on your MRI would not likely cause the variety of symptoms you are experiencing. I'm not a doctor so I can't say what the cause might be. It just doesn't sound like MS.

Kyle
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi there, it should be somewhat of a relief to have the MRI evidence that you don't have any lesions in your brain or spine, and from my way of thinking, if your sx's of 20 years, were being caused by MS, then you definitely would of had Lesions showing up, so that would make MS very unlikely.

I took some time to go through your posting history, and things that stood out in my mind, were that you have a dx history of Migraine before this happened, 18 yrs or so dx with hyper-thyroid (or was is hypo-thyroid?), you had enough evidence of gallbladder problems to warrant removal. Your spinal MRI does show some issues that may or may not be significant now but does indicate potential issues as you age and you also have a history of allergy/sinusitis requiring treatment.

On top of your own medical situation your husband was dx with cancer, which i've presumed (since you haven't mentioned this much) to mean he's in remission (hope thats correct!) but understandably you would of been dealing with a lot of stress and emotional upheaval. You did mention being uncomfortable with taking medications that could make you feel down, because you were already down and some of your wording makes me think you may also be dealing with higher levels of anxiety, than you may otherwise have. I know that is possibly a little presumptuous, but it would be totally understandable under those circumstances, to be also dealing with some psychological issues as well.

All together, I do think you have multiple dx-ed pre-existing condition and they should explain most, if not all that you have experienced..... and going out on a limb, its 'possible' that your emotional state or worry has pushed you towards thinking you could have something else, and each sx you found in MS, that was similar to yours, has only made you more worried and more convinced it could be MS.

I am in no way saying that you don't have medical issues, not at all because you do, but the things you have mentioned are some of the mimics and because you don't have any lesion evidence after 20 yrs of sx's, then it is just more likely to be caused by what you already know, or related to what you already know, than an additional medical condition like MS that there is no evidence of. I would suggest you see your dr, to discuss if your sx's could be due to your dx conditions (including medication) and if there are some alternative ideas he/she could suggest to improve your quality of life.  

Food for thought................JJ  

  

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