Appointment at Washington University Apr 30th

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Appointment at Washington University Apr 30th

Postby Ghayes420 on April 29th, 2015, 9:20 pm

Well back to my home away from home, the neurologist's office. Before you start rolling your eyes at my 12th appointment in 3.5 years, there have been some changes to my symptom profile since my visit to the Mayo Clinic back in January. So I have a few reasons to seek counsel:

1.) I now have diagnosed neuritis in my sural nerve on my right foot that is not healing quickly or barely at all.
2.) The pain and numbness is now extending to my left foot as well all the way up to the back of my knee.
3.) There is also nerve pain and numbness occurring at the end of the nerve paths in both hands as well with intermittent numbness in the ends of both thumbs. This is referred to commonly as the 'sock and glove' presentation of neuropathy.
4.) I have since relocated to the Midwest and wanted to establish a neurological contact in the area in which I now live, my GP was happy to refer me after I told him my story and showed him my fascics in my eyes, neck and arms.
5.) I wanted to visit a specific doctor, Muhammad Al-Lozi located at Washington University here in St. Louis. He is very well known in the community of neuromuscular disorders and has seen several people on this forum over the years. (expanding my knowledge base to include yet another Top 10 expert)

So now that you have my excuses, I am looking forward to see his opinion of what exactly is attacking my sensory nervous system and why just now after almost 3.5 years of continuous fasciculations. Curious if they are related. The pain in my wrist I was also hoping he could confirm is from a ganglion cyst that is very obvious by my observation.

I am not going into this appointment with much concern over ALS/CTE or MND but I do have my moments. I am more concerned of the new symptoms, the possibility of small fiber neuropathy or alcoholic polyneuropathy. As well as if he feels that a follow-up is required, which would not really be good for my psyche per say. Preparing for the clinical exam to be spotless minus my brisk leg reflexes which have come and gone over the years.

I will keep you updated after the appointment in the morning tomorrow. Glad to have this group to share the knowledge with.
-Greg
A very proud fasciculator since 8/14/2011. :)
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Re: Appointment at Washington University Apr 30th

Postby Xina535 on April 30th, 2015, 7:18 am

Well I am glad at least that you have an explanation of your feet/lower body complaints! Did he propose any treatment for that (cortisone, gabapentine)?

What did this neuro say about the ganglion cyst and about the sensations/neuropathy in both of your hands?
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Re: Appointment at Washington University Apr 30th

Postby Xina535 on April 30th, 2015, 7:20 am

Oh - another question - did he say what could have caused your sural neuritis? Do you have or had you ever had positive ANAs?
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Re: Appointment at Washington University Apr 30th

Postby leaflea on April 30th, 2015, 7:27 am

Ganglion cysts not uncommon around here (search if you haven't), didn't Matt babajo have one also? I think I've got them on both sides. New with bfs.
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Re: Appointment at Washington University Apr 30th

Postby Xina535 on April 30th, 2015, 7:28 am

leaflea wrote:Ganglion cysts not uncommon around here (search if you haven't), didn't Matt babajo have one also? I think I've got them on both sides. New with bfs.


*raises hand* I did. Got it removed in Jan. Unfortunately, no improvement, only worsening of my right hand symptoms. :roll:
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Re: Appointment at Washington University Apr 30th

Postby Ghayes420 on April 30th, 2015, 11:38 am

Well I am back and I am as excited as ever. I don't have BFS. Today, after an examination and testing that was more thorough than either visit to the Mayo Clinic, I was diagnosed as having Small Fiber Neuropathy.

I am very happy to have this dx and very excited to finally, after 3.5 years, have an explanation for my symptoms.

I am sure this next statement will cause an uprising but in the interest of adding knowledge to this forum, I will share with you that at Washington University here in St. Louis, they don't use the term BFS or benign fascicualtions, they don't feel that fasciculations are benign because they can cause distress in the patient as they have for so many here. They do use the diagnosis of CFS and they are able to confirm a CFS dx through EMG and the special NCV test known as RNS, Rapid Nerve Stimulation. Most al CFS cases with have both fascics AND cramps. Even when the RNS is negative, they will still use the CFS term when there are fascics AND cramps and no other causation is found. I don't get cramps, therefore they did not feel CFS was probable and this pointed them towards SFN.

I do twitch (have fascicualtions) constantly as well as have increasing amount of sensory symptoms. These include, pain, numbness and confirmed on the clinical, a mild loss of hot/cold sensations in my feet. Awaiting the results of the skin biopsy which they claim is not always positive in small fiber neuropathy cases. They claim about 50% of SFN is idiopathic (no known cause) about 25% is related to diabetes and 20% due to autoimmune conditions. The remaining 5% is due to amylodosis and alcoholism.

I was prescribed Vitamin B1 (thiamine) and start that in case the SFN is related to alcohol although they said there was no true way to confirm that.

Due to my timeframe, ALS wasn't even really on their radar. I had a positive Hoffmann reflex again and brisk reflexes all over but symmetric. We discussed ALS and never have they seen a case go this time frame and then weakness develop. They did elaborate on cases in which fascics are the presenting sx, of course admitting that it is extremely rare. In those cases, fascics are very violent and all over upper body mostly, weakness will show itself in 3-9 months. One time they saw it up to a year. Never longer in their experience.

No follow-up was required.

I can't say enough good things about Washington University or Dr. Al-Lozi, truly a professional with great bedside manners. I am glad that I can close the book on my sx and finally have a diagnosis I am comfortable with.
A very proud fasciculator since 8/14/2011. :)
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Re: Appointment at Washington University Apr 30th

Postby mwagner on April 30th, 2015, 11:51 am

I'm so happy that you have a diagnosis, Greg.

Are fascics part of SFN? There are many times that I have wondered if I have it. But, pain and sensory symptoms are definitely secondary to my twitching.

I have cramps but few and far between, and I have had the same foot cramps since I was a child. I'm guessing I wouldn't be in the CFS category?

Anyway, this is an interesting post and thanks for letting us know! I hope that their treatment works for you. Do you have to abstain from alcohol completely?

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Re: Appointment at Washington University Apr 30th

Postby Ghayes420 on April 30th, 2015, 12:13 pm

Thanks Mitra. To say I am elated would be a disservice to the word.

Yes, twitching very much is related to SFN

And no, I don't have to abstain completely from alcohol he was fine with a drastic reduction and just sticking to beer and wine. ( Thank God)
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Re: Appointment at Washington University Apr 30th

Postby Scboy on April 30th, 2015, 12:19 pm

Glad it went well. Welcome to the sfn club. We have very similar symptoms. I don't cramp either.
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Re: Appointment at Washington University Apr 30th

Postby Ghayes420 on April 30th, 2015, 12:24 pm

Thanks SC, and proud to be a member. Do they send us official cards in the mail? Is there an official handshake or anything?
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Re: Appointment at Washington University Apr 30th

Postby mwagner on April 30th, 2015, 12:25 pm

I'm just wondering how much drinking can cause SFN? I have on average 7 drinks a week, most of that number during the weekend :) I think that puts me in the moderate/heavy drinker category (I read that somewhere and was shocked because I didn't think that 7 was much and my doctors have never said anything - but it was 7 for women, and 15 for men to categorize them as "heavy drinkers"). I know I have a B12 deficiency. And I have the genetic MTHFR defect that makes me unable to process folic acid and convert it to folate (which also includes issues with B12).

This is all interesting to me... and really makes me wonder if I have the same thing. My more sensory symptoms include pains that feel bee stings, which are ridiculously painful when they occur. Thankfully I don't have that all the time like I do with twitching. I've also had random numbness, etc. Maybe I'll go get this all checked out at some point, if I ever get the stomach to visit a neurologist again (serious PTSD for me - from my visit 3.5 years ago).

Yay! Hopefully you can start healing now!!!!

Big hug to you my friend.

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Re: Appointment at Washington University Apr 30th

Postby nickston on April 30th, 2015, 1:47 pm

We're playing with words here, but since nobody really knows what BFS is, I wonder if SFN can fall under the overall umbrella of BFS. I know St Louis doesn't use the term, but we do, and it's really any condition involving fasciculations that are physiologically benign. Sounds like your condition (SFN) would fall under the BFS umbrella. I guess it's just my way of making sure you don't leave us now that you have a diagnosis :-)
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Re: Appointment at Washington University Apr 30th

Postby Scboy on April 30th, 2015, 2:07 pm

Ghayes420 wrote:Thanks SC, and proud to be a member. Do they send us official cards in the mail? Is there an official handshake or anything?

Haha, no I'm afraid just pain and weird sensory sensations. My tongue feels like I have a 9volt battery pressed against it today. Also lips, cheeks and eyelids feel sunburned.
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Re: Appointment at Washington University Apr 30th

Postby Ghayes420 on April 30th, 2015, 3:38 pm

Hi nickson. Don't worry, I won't bail. But fortunately it's not just a play on words. SFN is a diagnosable condition that doesn't fall under any BFS umbrella. It is diagnosed through clinical exam (sensory findings of hot/cold), QSART test, and skin biopsy.

There are multiple causes of SFN, finding the cause is always the tough part.

However I just am now leaving Wash U.

I just had the QSART test done and he confirmed the results were abnormal. My foot did not produce the sweat response. He said this further confirms his suspicion of SFN and now they will wait for the results of the biopsy which will take 3-4 weeks to return.

Again not bailing on this site, but surely not BFS at this point.
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Re: Appointment at Washington University Apr 30th

Postby misterjuanperalta on April 30th, 2015, 7:57 pm

Over 50% of SFN is idiopathic and metabolic syndrome is suspect. Did you have pins and needles as part of your presenting symptoms?
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