Thought it was BFS, now worried it might be MS

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Thought it was BFS, now worried it might be MS

Postby bluerobsn » Thu Nov 13, 2014 10:26 am

Hey gals and guys. I am new to the boards. I've been very concerned as of recent about possibility of having MS.

I'll try to keep it short as possible and not take up a lot of your time, but there is a lot to note. So about 3 months ago I had an attack. I was up late drinking way too much caffeine, when my hands started to feel numb. Not that I could feel objects, but that I can't feel control over my own hand. It was really weird. The next day I woke up and I just felt out of it. Total fogginess and a weird sense that I wasn't in total control over my body. Especially my left arm. It felt like I could control my arm, but there were drops in signals being sent. Almost like my internal frame rate was skipping beats and my brain was having a hard time keeping up with the signals and responses in moving my arm. This last 1-2 days. Not very long.

The following days I was getting pain in my forearms and hands. Cramping in my hands sometimes.

I was also getting buzzing feelings all around my body. Particularly my legs. Sometimes I get a very quick jolt that would move my whole leg (usually right leg). One of the most persistent issues I was having was cramping in my right calf.

Other weird things began to happen, I'd get lumps in my throat where I felt like I had a hard time swallowing (but this could be stress induced), and my upper lip would twitch randomly and then stop for long periods, then happen again for a brief period. That happened for like 2 days.

Over the following months I've had all kinds of weird issues. I'll break it down in to 2 periods.

Beginning (first month):
- Buzzing feeling in thighs or calfs. sometimes both calf and thighs, sometimes in both legs, but usually more in the right leg.
- periods of super brief twitching in random areas of my body (but more prominent in my legs)
- headaches right above my eyes (usually only on one side of my head during the stint of the headache),
- brief bouts of borderline balancing issues
- exercise intolerance (freaked me out because I was had been cycling everyday for some time, then out of no where I was feeling more and longer muscle fatigue than usual)
- Stiffness in hands / feeling of weakness in right hand. Occasionally dropping stuff.
- Pain and uncomfortable sensations in arms and legs. usually last all day in one area and move to another area the next day or the following day.
- Cramping /straining feeling in right calf. Most of the day, most days a week, every week.
- Zaps / Shocks - basically a leg would feel like it gets a jolt of electricity down it and it moves the whole leg or part of the leg. This would happen more at night. Few times in a day total.
- lumps in throat or sometimes sore throat that last for a few hours. didn't happen very often, but very noticeable when it did.
- prob unrelated, but very yellow stool. Not common for me.
- eye lid twitches. eye lid would twitch anytime I rubbed my eye or sneezed. started in right eye for about a week, then the following week it moved to my left eye and was no longer present in my right eye.
- at one point I was in a grocery store and my entire body started to feel like it was vibrating. the core of my arms, legs, and torso all felt like I was vibrating, it only last about 15 mins, but it was incredibly weird and somewhat alarming. I felt like I was about to take off. it was an amazing sensation.
- Speech issues, feeling like I had trouble finding words, and often times slipping on words.


Now (two months after first month)
- occasional bouts of speech issues. Usually only last a day with long periods of remission in between.
- buzzing feeling in my legs, especially at night when I am in bed.
- right hand still feels weaker, not dropping stuff so much, but sensations and feeling weakness when handling stuff.
- lump in throat still pops up randomly.
- cramping / straining feeling in right calf still very present.


So after doing the typical google search I scared myself in to thinking I had ALS. I went to my GP and he sent me to neurologist. I did an strength tests and EMG. Was told no signs of ALS, slight development of carpal tunnel in my left arm, but nothing serious. Was probably due to riding my bike.

I was still ALS paranoid, but overtime I did more research and it began to sink in that a lot of my symptoms wouldn't be present in an early stage of ALS.
My symptoms seemed more inline with BFS.

I got less stressed about it and my issues become more of annoyance then actual mental burden. However I still continued to do research because I still would get random sensations / tingles / buzzes and I wanted to keep on top of my game, make sure I wasn't grouping symptoms in to BFS if they didn't match.

Then I started reading more about MS, and it hit me like a brick. My vision. For almost 2 years now as of Jan, I've been having weird vision problems. It started with a really big dark floater in my right eye. I was traveling to see family in PA and while I was in the airport coming home, I noticed my vision was a little blurry and I had a big old floater in my right eye. It didn't make it hard to see, but it was super distracting.

The floater has never gone away, I just learned to look past it, but I still had random bouts of blurriness that would come and go. I went and saw an 2 different eye doctors and they both dismissed it as a natural thing. Nothing I could do about it.

The blurriness was most apparent when I was in a room with white fluorescent tubes lighting. I would see tracers on the lights and it would become very distracting.

I took a trip that April to Japan and I remember standing at a trains station, getting upset because I was finally in Japan, a place I always wanted to travel to, and I couldn't enjoy it because my damn eye issues were so distracting with all the lights.


Now, I've never had double vision, not that I can remember. It's always just been this very visible dark floater, and blurriness in both my eyes. The blurriness comes and goes.

But this got me really paranoid maybe it was a early symptom of MS and this recent bout of issues was a flare up and much bigger sign of MS.


Footnote, I don't really feel fatigued. My legs muscles do sometimes, but I don't have general fatigue. I haven't wanted to spend the whole day in bed or felt drained. But I know every case of MS is different and not everyone has the same symptoms. I do also have sciatica, that runs in my family. The most that affects is my right leg and I just have to avoid sitting in soft chairs and picking up heavy objects.

I got an MRI of my neck this week at my GP's request, I am going to see my GP next week to go over the results.

What do you guys think? I know you can't give me a diagnosis, but do my symptoms sound inline with MS or is there too much going that is not inline with MS?

Thanks guys.
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Re: Thought it was BFS, now worried it might be MS

Postby bluerobsn » Thu Nov 13, 2014 10:33 am

Wow, literally got up to go to the bathroom after I wrote that, and my phone was ringing when I got back to my desk. It was my GP calling with the results of my neck MRI. Slight herniated disc in my neck, but nothing that would cause most of the issues I was complaining about. Recommended I return to my neurologist to investigate more.
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Re: Thought it was BFS, now worried it might be MS

Postby lyndacarol » Thu Nov 13, 2014 12:25 pm

Welcome to ThisIsMS, bluerobsn.

The first symptom you describe is "my hands started to feel numb." Numbness/tingling in the legs and arms is the textbook definition of "peripheral neuropathy." This is a common symptom in MANY conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels – (ask about homocysteine and methylmalonic acid tests, also)
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
Please note that the first blood test the U of Chicago suggests is for vitamin B12. In my opinion, this should be the first area your GP, neurologist, even an eye doctor who was aware of all your neurological symptoms should have investigated. Next week when you see your GP, you might discuss this possibility if you have not already. Any person at any age can develop a B12 deficiency; this can be easily and inexpensively treated; and if caught early, symptoms can usually be reversed.

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

Check out the website: http://b12awareness.org/
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Re: Thought it was BFS, now worried it might be MS

Postby bluerobsn » Thu Nov 13, 2014 2:21 pm

Hi lyndacarol, thanks for the reply.

So when I got my eye tests done, it was over a year ago. I had no signs of any other neurological issues. So they weren't checking for it then.

I did get 2 rounds of bloodwork done. The second was a panel testing for all sorts of stuff, I am not sure if B-12 was on the list, but they checked for everything including diabetes, lyme, thyroid, and other usual suspects. It came back all clean. After that I even did a 24 hour urine sample. Clean as well.

So since my GP called me and said everything looked fine with my neck MRI, to start seeing the neurologist now because my he (my gp) couldn't do much else for me. I have an appointment with my neurologist on the 25th of Nov.

What about some of the symptoms I described? Anything standing out as not MS?
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Re: Thought it was BFS, now worried it might be MS

Postby lyndacarol » Thu Nov 13, 2014 4:24 pm

The doctor who ordered all the bloodwork for you, bluerobsn, seems to be very thorough. It seems to me very likely that he did order a serum B12 test. (By the way, I think it is a good idea for everyone to request copies of any test done. It is good to have the actual numbers.) Please be aware that the serum B12 test alone is not adequate to find a deficiency; the folate test, the homocysteine test, and the methylmalonic acid test are used to confirm findings in the blood.

There are two kinds of B12 deficiency: in the blood or in the tissues. If the blood tests have good results, there can still be a deficiency in the tissues (i.e., the cells) – further testing or diagnostic therapy can identify that.

If screening for B12 test has not been done, it would be good to discuss it with your neurologist on the 25th.

To answer your questions… The symptoms you describe are found with MS, but they are common to many other conditions, as well. MS is a diagnosis of exclusion. The other more likely causes are ruled out first.

In my opinion, not one of your symptoms (with the possible exception of "yellow stool") stands out as an impossible symptom for MS. Likewise, there is no one symptom (or test) that says, "Aha! This is definitely MS!
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Re: Thought it was BFS, now worried it might be MS

Postby jimmylegs » Fri Nov 14, 2014 9:35 am

hi and welcome, blue

if you have copies of your lab results and are not averse to sharing, there could be some useful info there (depending what's been ordered) that the docs may have missed. happy to have a look if you are comfortable with posting.

if not, you can perhaps check out feedback on others' blood work and compare to your info privately.
examples:
undiagnosed-f54/topic25417.html#p229388
regimens-f22/topic24081.html#p220488
regimens-f22/topic22992.html#p215117

hope that helps :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Thought it was BFS, now worried it might be MS

Postby dana1985 » Mon Feb 09, 2015 8:31 am

Sorry to hear you have to deal with all those symptoms. I definitely feel your pain. I also have crazy eye floaters and my neurologist and eye specialist both said it was just a natural thing too. Don't see how swinging my hands around to swat at things I swear I am seeing fly by me because of the floaters is natural, but hey, what do I know? hehe.

Also have the cramping and pain in my legs, wrists and forearms and that weird buzzing feeling. And the twitching... oh my goodness.. twitching all over.. the past week my eye twitch has increased in severity and almost closes completely with each twitch. I had gone to a second neurologist for a second opinion at one of the top hospitals in my area and they told me I shouldn't be concerned about ALS (which was a HUGE relief) but that I had BFS.

Now my primary doctor still believes I have MS and continues to send me to neurologist after neurologist... I've been doctor hopping hoping for answers for 8 months. I have also become a human pin cushion for sooo many tests. I have read so many times that the symptoms can be so different for each person and that it is a process trying to get a diagnosis or answers...

What did your neurologist say when you saw them at the end of November?

Wishing you the best of luck!
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