Back From Doctor with Question!

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Back From Doctor with Question!

Postby utahguy058 on May 16th, 2014, 11:13 am

I have been suffering from the Neurological issues since August of 2013. It all started with a numb foot, that crept up the right side of my body and then full body followed by non stop eye twitching and arch and calf foot twitching. Then came burning, pain, tingles, internal vibrating, buzzing of body parts, feeling like water on body, so many sensory issues. I had an MRI of my brain and cervical spine and neurological workup. I was absolutely mortified that I had MS. I saw chiropractors, eye doctor, massage therapist, general doctors, and physical therapists. Finally after a second flare up of symptoms after the first went away the neurologist gave me a diagnosis of BFS. I was relieved that this was it was. I was a nervous wreck for months then finally everything calmed down. I was starting to accept diagnosis. However I used to be a mega runner and loved it, and then started getting pain in side of butt and couldn't run. It would end up in burning in feet. I didn't now if this was all related or not, or if I was getting something pinched in my low back and or piriformis. I decided to go talk to a really good internal medicine doctor since previous doctors had never done anything about it. Just told me to stretch, which has never done anything for it. SOOOOO new doctor, I told him my history and he sent me into a panic! I told him that I had an MRI, been diagnosed with BFS and just was curious about the pain in lower body from exercise. He had never heard of BFS, but said, it sounds like you should just have fasiculations, not all of the other things that come with it. He said he wasn't convinced it wasn't MS. It sent me into an absolute panic! He ordered a lumbar MRI however for the lower body pain, but said it doesn't explain the other symptoms. SO QUESTION???

Are all these symptoms actually BFS symptoms, can you have numbness, burning, pain, pain that moves, or numbness that comes and goes and moves around, or even sticks around. Can it be in your face. The numbness I speak of is slight loss of sensation, not a total loss of sensation. I had clear MRIs, but he said that sometimes it won't show up in early stages. Now I am questioning if this is BFS, that all my sensory symptoms and buzzing and internal tremors are not related. Is BFS just the twitching? Any help or comments would help. Please.

KC
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Re: Back From Doctor with Question!

Postby Yuliasir on May 16th, 2014, 11:21 am

In a TRUE meaning BFS means only benign fasciculations and nothing more. But in fact all people with benign fasculations also have tons of other issues exactly like yours and it does not mean that they have non-benign fasciculations at the same time,, becasue BFS often comes hand in hand with certain sensory neuropathy, often it has features common for anxiety disorder onset, sometines it is accompanied by cramps and symptoms resembling RA... but nayway fascics in this case are benign.
calm down, it is just a matter of definitions.
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Re: Back From Doctor with Question!

Postby utahguy058 on May 16th, 2014, 11:24 am

Yulsair-

Are you trying to say that my symptoms are indeed part of BFS, and benign in nature and not something like MS or another neurological disease that is progressive in nature?
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Re: Back From Doctor with Question!

Postby ShawnW on May 16th, 2014, 11:26 am

Technically he is correct. The sensory symptoms you are experiencing don't fit nicely into the BFS box. With that said, so many of us experience exactly what you are talking about. I wish I had an explanation for it. I believe for many of us it stems from anxiety and a hyperexcitable nervous system. For others there are pinched nerves and what not. If you had a clean MRI, and bill of health from your neuro the odds of this being MS are slim.
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Re: Back From Doctor with Question!

Postby Yuliasir on May 16th, 2014, 12:42 pm

Dear utahguy058,
I am not a doctor and I did not see you in person, so to say, so how can I judge?
I just said that people with BFS have often accompanied sensory issues like you described, and I agree with your second doctor that pain in the butt does not mean neither MS nor BFS and probably is a result of sciatic nerve comprssion which is a frequent condition.

All your symptom description fits typical BFS ans accompained condtions clinical picture while MS usually have different clinical picture and in males usually is first manifested as optical neuritis (not always but it is one of the most typical onsets) which seem to be not your case. Sensory issues in MS usually are accompanied with prominent neurological deficites in related limbs, which you obvously do not have.

the doctor who says "I am not sure that this is not MS" and then did not send you for full size MS tests acts a bit strange as for me...
but anyway you had MRi already and there are no signs of MS lesion on it as far as I understand.

BFS people often compalin for sensory neuropathies, and becasue many of BFSers have dramatically low B and D vitamine levels, it may be realted to that status. Some of us appeared to have SNP due to old like disease (another common reason), so really those burning sensation, water feeling etc. are not strictly a clinical symptoms of MS. MS is diagnoed on the basis of clear clinical picture which includes acute neuritis and lesions on MRI (to be demonstarting spreading in time and space) plus specific changes in spinal fluid. Having sensory neuropaty and then sciatica pain for me is not the same as having optical neuritis and then paralysed leg or hand.

hope this would help a bit
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Re: Back From Doctor with Question!

Postby utahguy058 on May 16th, 2014, 4:37 pm

Yulsair-

Thanks for the thought out kind reply. You are right that both of my MRI's came back clean. They were both with contrast. The doctor also wants to collect all the testing I have had the last 8 months before deciding what direction to go in. I have had no clinical weakness, or paralysis, or balance troubles since this has started. I did have some fatigue, but that could be due to severe anxiety I was having at time. I will go in on Monday for an MRI of my lumbar spine to see if that reveals anything. Is it true what they say about non stop twitching not being MS related? I have not stopped twitching in feet or calves in 8 months.
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Re: Back From Doctor with Question!

Postby Yuliasir on May 16th, 2014, 9:51 pm

as far as I know, any twitches which last 8 month and do not have a company of weakness/paralysis may be considered as benign. MS is usually a fast and severely gripping disease (as I know several MS people by their blogs). In one case fatigue was so strong that the vicim was laying in bed for 20 hours per day practically unable to do anything. Optical neuritis in that case was also severe.After treatement he got everything reversed back to almost normal condition and now this young man lives full life.
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Re: Back From Doctor with Question!

Postby nrwtwitcher on May 17th, 2014, 7:50 am

Hi Utha, a neuro (neuromusculare specialist) told me, that sensory symptoms in bfs are the consequence of a hypersensible and hyperactive nerve system. I am not sure if he is right, but hel told me this. I have a lot of sensory symptoms too.
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Re: Back From Doctor with Question!

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