ALS, MS or something Else?

[seeking_help]

I am sorry for this being so long. I have waited several months to post hoping this would go away.

44 y/o male. Thought I was generally healthy. Worked out at gym & jogged regularly. Was taking Acyclovir for gential herpes for 45 days then stopped prior to symptoms.

Problems started in 10/04. Felt like I had a bug . Had strange sensation in face in corner & under right eye & felt poorly all over. Right hand had some pain in 4th & 5th finger felt numb by wasn’t really. PCP gave me Z-Pack for sinus. Symptoms continued & also had little burning feelings under my skin all over. Went to ER. Did a CT scan okay except for inflammatory in ethmoid sinus, heavy metal screen- normal. Prescribed 1 week of steroids. Made Neuro appt.

Mid Oct/04 - Neuro did full office exam – normal. Ordered a MRI w/wo contrast. MRI results – 1)Mild generalized volume loss of undetermined etiology 2)several predominantly subcortical white matter changes left greater than right – probably nonspecific but most consistent with ischemic small vessel changes – not felt likely to represent focal demyelinization due to distribution. 3)Skull is unremarkable. 4)Repeat in 3-6 months.

Neuro followed up with blood work CBC, Glucose, CPK, ESR, ANA, Sjogren, B12,RPR, TSH, Lyme – all normal except B12 was 276 (range 211-911)

PLEASE SEE CONTINUED in COMMENTS  THANKS!

[CCF-Neuro-M.D.-PW]

1) while ALS can cause a certain type of 'twitching' called 'fasciculations' I do not know of you really have fasciculation as opposed to other types of 'twitching'. Fasciculations are more continuous relatively slow irregular multifocal (in the same area). Other types of twitches occur that are more focal, faster, and more regular, that are not associated with ALS. A neurologist should be able to rcognise this if seen, and an EMG with active twitching can also differentiate this
Real fasciculations in the absence of muscle weakness and wasting (including the tongue, pharynx etc if that area is involved) is unlikely to be ALS.

2) strenght testing within the foot is difficult to judge. A better objective test of nerve damage in the foot is the EMG. Many other things than ALS can cause twitching in the foot including just for instance local trauma to the foot nerves from eg tight shoes. Again without EMG or clinical evidence of wasting it is unlikely to be ALS. Wasting would appear as a 'guttered' appearance between the tendons

3) see 1

4) see 2

5) that area is in the distribution of the trigeminal nerve which goes from the brainstem to the face skin areas. Anything in this path can cause irritation of the nerve and intermittent or constant symptoms. Sometimes a abnormal blood vessel loop can compress the nerve at the brainstem, and surgery is available if this is diagbnosed and symptoms are intolerable. An MRI concentrating on the trigeminal nerve may reveal this, other reasons like a tumor or growth would be seen on a regular MRI

6) I'm not sure why you are taking B12 if you have not been diagnosed with deficiency or a cause for the deficiency

7) Stress and anxiety can cause any neurological symptom, but this is a diagnosis of exclusion (other things need to be excluded)

8) what is elevating your arms? if it is the sides to an armchair or similar, you could be compressing a nerve in the arm
the resolution is to avoid the situation if possible with your arms elevated during sleep

I cannot give you a clinical diagnosis over the internet, but you should be at least encouraged that nothing serious has turned up at this point. Other potential causes include a type of postviral sensory neuropathy, Lyme, sarcoid, exclude a mass or blood vessel loop, or local trauma. The mildly elevated CSF protein is non-specific but could be consistent with a postviral neuropathy.
Good luck

[seeking_help]

Continues from ABOVE......

Late Oct/05 - Ordered LP –Chemistry - CSF Glucose, Protein, Oligoclonal Bands, CSF Inflammation Panel, Microbiology – India Ink, VDRL, Fungal Culture, ADB Culture, Hematology – cell count, Differential, Miscellaneous - Mylen Basic Protein, Viral Culture, Cytology - all in range except RBC was 2 & CSF Protein was 52 (range was 15-45).

Ordered VERS – normal.

Neuro thought it was aniexty.

Nov 04 – Had same symptoms as before plus started having twitching in lower abdomen & over left ear, left inner thigh and a few places here & there. Neuro ordered spine MRI w/wo contrast– blood work of RA & Anti DNA DS – blood work normal.

MRI Spine results:
Cervical – 1)Mild degenerative changes without any central canal stenosis. 2)the neural foramen show very minimal narrowing on the left at c6-7.
Lumbar – 1)Very minimal degenerative changes of the lumbar spine without any central canal or neural foraminal stenosis.
Thoracic – Unremarable.

Neuro did EMG 11/10/04 of RU & LL extremities. Results revealed R ulnar neuropathy which is related to previous injury to R ulnar nerve otherwise normal. Neuro said see someone for anxiety.

Mid Dec/04 Symptoms persist with occasional pain in right hand but numb feeling gone, more twitching moving around some and face sensations causing my R eye to feel watery and the R corner of my lips to feel numb although they are not. Most twitching comes and goes except for R foot along the arch to my big toe & on the outside from my little toe down. Also have Right foot pain from time to time. Scheduled 2nd opinion with new Neuro for Jan /05.

Neuro appt consist of in office exam –seemed normal. Twitching in R foot now for over 1 month. Tried to show him but it didn’t do it then. Neuro ordered blood work, evoked potential of upper and lower extremities and EEG and repeat of Brain MRI.

Neuro Appt 03/05.
Brain MRI – no change from first MRI, EEG – Normal. Evoked Potentials normal.  Blood Work RPR normal, positive for Epstein Barr and HSV 1 & 2. Neuro thinks EB virus has been in system for a long time and doesn’t seem worried. I showed him R foot again & it was twitching! He looked right at it as my concerns for ALS are high & said “that doesn’t look like ALS.” He looked at my calf muscle and asked me to walk across the room and back. I should have made him give me an EMG!. He said he thought my brain MRI was just normal aging and didn’t seem concerned with the weird sensation that goes from the corner of my R eye down to the corner of my right lips. He said come back in 3-4 months

Present  - The MAIN symptoms that remain is the twitching in my right foot every day for over 3 months now, the sensation from the corner of my right eye down toward the corner of my right and upper lips every day for 5 months. It makes my think the corner of lips are numb and also makes my eye water sometimes.

Occasional symptoms is pain in my right foot,  some twitching in other parts of my body (lips, chin, tri-ceps, thighs, calf muscles and a few other places) but they seem to come and go after a few days & not always in the same place. I also get some little burning type feelings under my skin from time to time that feel like they run about a sec or less and about an inch and then gone. Some strange buzzing feelings in different places for a day then it stops and is somewhere else. Lastly on occasion the tips of my fingers or hands and toes will itch for a little while then stop. Also get those little cuts in the corners of my mouth between lips last about a week to ten days then gets better.

I left weights at the gym 3-4 times a week and walk 2-3 times a week about 2-3 miles.

I am taking a B12 supplement 1000mg, 500mg of Magnesium and a daily multi-vitamin and mineral supplement (also contain B12)

I am seriously worried about MS and especially ALS

I do suffer from some anxiety problems that were mostly social related. Do not now nor ever taken any medication for it.

I even took a HIV test - negative,

Questions:
1)Can ALS start slow like this with twitching being first?

2)My foot has been twitching in the arch area and down from my little toe for over three months every day. I can walk fine. What would atrophy look like in my foot? Can that be happening without weakness? What would be a good test for strength in this foot that I can do?

3)Can a good Neuro look at a twitch (my popped off in my foot about 3 or 4 times as he was looking at it) and know “that doesn’t look like ALS"?

4)Should I get an EMG of my foot and how long if any time should I wait to rule out a ALS issue with this area?

5)I had a tick on my head over a year ago – could my Lyme test be negative and I still have it? Do I need a different type of test?

6)Have you ever heard of anything like is going on in the right side of my face from the corner of my right eye down to the corners of my right lips? It isn't a sharp pain but just a strange continuous sensation.

7)Am I taking to much B12?

8)Can stress and axiexty really cause this many symptoms? Just doesn't seem logical to me.

8)As an aside, for several years now when I lay down for a nap or sleep, if my hands are at shoulder level or higher they go to sleep starting with the little fingers and moving inward. They resolve quickly should I lower them.???

Thank you for your help. I am sorry for the length but my insurance company is getting a bit concerned and I am afraid they are going to stop paying since no DX has been stated yet.

Guy

[seeking_help]

One last thing...

about a 5 days ago a little circle less than a 1/2 inch in diameter is over my upper right corner lip. It seems to be more white around the circle area and seems to have a little spot in middle. It also seem to be less sensative to a pin ***** that around that area. This is the same side of my face that I have having the strange sensasations from the corner of my right eye to the corners of my right side of my lips.

Thanks

[robi_10]

It sounds like symptoms of lyme disease. I know you had a test and it was negative but if that was by labcorp or quest it was a crappy test. Doctors are not good at diagnosing Lyme. I had 2 negative tests and saw 4 Drs. before getting a proper DIagnosis. I am being treated and have been improving.

You can email me at ***@**** if you'd like. I can give you a lot more info. I am not a doctor.

robi

[emt146875]

if they havent found anything yet blood tests and blood gases would have shown something. maybe you are just so stressed and worried over nothing that you in fact manipulating your body into getting ill. herpes simplex 1 or "the commen cold sore" can be brought on by stress. genital herpes is the one you should worry about. but please dont tell me thanks  ...Emt

[robi_10]

So many Lyme folks get told it is anxiety. This really pisses me off! I was tld anxiety also. I know myself pretty well, anxiety truly did not make sense, there was something els going on. Don't let the medical folks poo-poo your symptoms as anxiety if you know there is somethig wrong.

It is easier to say you are anxious than for many to admit they do not know. Please emailme for more info.

robi

[JoMarie]

For over 6 months I have had eye twitching (both eyes) and here recently it happens several times a day or even several times an hour. I am 28 and healthy. I have a father that died from MS.  So this is my question, should I be concerned? Last night my foot twitched when I went to bed and today at work I have had a twitch in my inner and outer right arm that has lasted in 5 minute spells at least 10 times already. And to top all of this off, I had one twitch in my right knee. Over the past 4-5 days, I have not had any caffeine and have got lots of sleep and nothing has really changed. Please give me some advice, I am starting to freak out!

[johnflox]

It could well be that you have a delayed reaction to the acyclovir you took.
I would make a search on the subject just to be sure or to help to discard the possibility.

[DET]

hello

March 9 Worked out

March 20 Alternating pain in groin area seem to be positional when driving—continued for next couple weeks alternating from side to side—one day left next day right side

March 30 Saw GP for annual check up—did regular checkup and drew blood

April 1 Whent back to GP, (complained of  pain under last lower rib) -- drew blood for CBC, rheumatoid factor, lyme ---told him also felt tingling sensations more on left side.  Left little finger tingling and feeling like it is asleep

April 11 Blood test normal – still didn’t feel well was having night sweats.  GP ordered thyroid test and glucose and CT abdomen and pelvic— asked GP about heavy metal told him I ate fish every day for last couple years, also ask about B-12.  GP did not think this was a problem.  Also to

April 18 All results normal but still have tingling.  Left side just felt different than right GP suggested neurologist.  Index finger tingling and feeling like it was going asleep
.
May 3 Saw neurologist – told him of above symptoms.  Also mention when bending head forward I could feel a sensation (not buzzing) like I was about to urinate at the end of my penis.  Said everything OK—no neurological problems-- tingling will probably go away.

May 4 Noticed twitch in left little finger muscle just a few times then again the same time next day.

May 9 LHermittes sign noticed buzzing in left foot.  Didn’t feel like an electric shock that originated in my spine and traveled down my spine and out my foot but just a buzzing feeling in the bottom of my foot.  I don’t know if that is true Lhermittes or not.

May 11 twitch left arm below wrist a few times once every 2 or 3 seconds for maybe 30 seconds then went away

May 12 Another neurologist (second opinion but new symptons) explained continued tingling but less tingling than in days before. Told him that I feel weaker on the left side, with buzzing in left foot.  He said he didn’t know if the buzzing was lhermittes or not.  He felt everything OK but wanted me to do cervical MRI.

May 13 Cervical MRI – MRI revealed some degenerative disc disease, osteophyte, mild retrolisthesis of c4 on c5 some changes at c6 and c7 mild central soft disc herniations

May 20 Spine doctor –took plain x-rays lumbar cervical and looked at MRI—felt had mechanical problems and neuro OK.  No sensory loss or weakness whe pulling on arms and legs--- wanted me to try PT. I ask about possible MRI of lumbar and EEG to determine cause of symptoms or if weakness or conduction problems exist but he thought these were not necessary at this time.

May 24 Noticed twitch in calf left leg every 2 or 3 seconds for lmaybe 30 seconds then went away. Buzzing my foot was continuous through the night regardless of position.  Also felt some buzzing in my right knee area.

May 25 Buzzing in foot now when bend head forward—not continuous


*Current summary:  Have worked out in gym regularly for about 1 year.  I took February off but resumed beginning of March for one week and stopped.  Three weeks later I noticed the first symptom of groin pain.  I resumed working out about twice a week at beginning of April and stopped on May 5 with no measurable weakness but feel weaker on the left side.  I have also noticed that it is harder to type with my left hand.  Left ankle has felt sprained since resuming workout in beginning of April---Both feet pronate.  I have not worked out since May 5 and I have not improved.  If I flex a muscle on my left and hold it feels different than before—maybe my imagination. I  have been anxious and not sleeping well for months.

Dose this sound like MS or ALS or just some degenerating disc?
Please respond