ALS related?

[DWADWA]

Hi, I’m wondering about a possible diagnosis that my Doctors can’t seem to find.  I worry about ALS most I suppose.  I was a very active, healthy 38-year-old male until about a year ago.  In April 05 after weeks of feeling exhausted I was diagnosed with Mono and CMV.  After 10 weeks, I felt better and close to normal.  In Sept 05 when I developed an awful case of mouth ulcers. Infectious Disease Doctors could not find anything.  This went on for over 3 months until Jan06 when they finally ceased to bother me.  Unfortunately about two weeks into Jan06, I developed my present symptoms.  Fatigue in my legs and my arms, brain fog, dizziness and initially some heart palpitations (they have been better recently). No muscle twitching (yet). This landed me in the hospital and I went through MRI, CTscan, heart work-up inc. Stress Test and Electrocardiogram, halter etc.  I saw a Neurologist for a basic work-up (no EMG yet) and nothing abnormal was found.  Blood tests, thyroid, Lyme Titer, sed rate was all negative.  GP wants to send me to Neurologist in Boston, but appt’s are hard to come by.  Have developed a lump in my throat over the last two weeks, comes and goes. Talked my GP into treating me for presumed Lyme (serum was NEG).  200 mg Doxyclycline for 30 days just started taking.  I feel OK just sitting still, but fatigue and malaise keep me from doing much. The arm and leg fatigue is the most prominent symptom.  Once I get moving and exercising (have to force myself) I do alright, but just standing (or after completion of light workout) my legs are wobbly and feel like I could collapse at any time.  Hand-eye coordination is slightly affected. Arms are weak so even holding them over the keyboard is a struggle. No pain at all just muscle fatigue.  No family history of any major illness. Thanks for any suggestions.

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

Generalized weakness and fatigue are relatively non-specific and do not necessarily imply a neurological disease, for example, if you are anemic, then you will feel as you describe above.

Some neurological diseases can cause generalized muscle weakness such as myopathies, or disorders of energy metabolism. There are some simple blood tests that can suggest these disorders, or sometimes a biopsy of a muscle is necessary to make a diagnosis. Weakness/fatigue that gets better with exercise is unsual for neurological disease but can occur in the Lambert-Eaton syndrome - a disroder of the juntion of the nerves and muscles that can be assessd for by EMG or some blood test antobodies.

Muscle fatigue in the absence of objective muscle weakness, fasciulations or wasting in unlikely to be due to ALS

Good luck

[patsy10]

Did anyone mention Behcet's disease to you?  One of the neuro's I saw mentioned it but I don't have any mouth ulcers.  You may want to do a google search on it.

[DWADWA]

Hi, thanks for the comments.  Thought I should add a quick question on B12 defiency.  The only medication that I am on is protonix for acid reflux.  I have been takin 40 mg daily for 6 or 7 years.  I understand that acid blockers can block absorbtion of B12 and cause similar symptoms as I have.

[erpatti]

i had dizziness, palpitations extreme weakness in extremities, eyes hurt, tingling numbness in extremities, brain fog, anxiety , insomnia, . Anyways they ruled out MS , lupus, and even though my lyme blood test and spinal tap were neg , I am being treated for lyme because I have pulled ticks off myself. I am on my 6th week of Doxy ,at first I felt worse and now having some good days. I am a nurse your symptoms dont sound like als at all. I have been out of work, I had almost the exact same thing 13 years ago.  Good luck

[patsy10]

I have the same symptoms you have.  Ironically, I had them in 1992. They returned in 2005. My name is also Patti and I am a nurse.  I used to work in ER.  I took antibiotics back in 1993 and got better so I am going the Lyme route again this time since I had 3 bullseye rashes summer of 1992.  My neuro symptoms started in Jan 1993.

[erpatti]

What a coincidence . I first got sick in 1992 also , my symptoms waxed and waned but come back full force in dec2005. At first  I though it was menopause. The palp. lightheaded, anxious , even the insomnia. But then the eyes started hurting headache stiff neck anorexic, tingling everywhere even face and the fatigue and weakness unbelievable. Just to get out of bed and shower was exhausting. Went through all the tests again . Started on doxy because  I have pulled off ticks all my titers and spinal tap neg. Mri showed a few small non specifc lesions , tap neg for ms. Neurologist doesnt think i have ms or cns lyme. Rheumatoid Dr. calls it fibromyalgia but treats me for lyme . I have been out of work 2 months. At first I felt worse on doxy slowly having good days. My mind is clearer and some strength coming back. As a nurse isnt scary when you know the Drs. really don't know. There are so many people out there like us.

[patsy10]

I agree, it's very scary when the doctors don't even know.  Both times this has happened to me I got a bunch of I don't knows.

I had a spinal tap, MRI/MRA, EMG's in 1993. The neuro said "you have a central nervous system disorder but I have no idea what it is"  This neuro was from the Cleveland Clinic.  I've seen three neuro's this time around.  The third one (Cleveland Clinic) said fibro because all my neuro tests have come back normal...MRI brain twice, thoracic, cervical, lumbar MRI's, emg, evoked potentials.  I have an appt. this week with fibro specialist at Cleveland Clinic.  I don't think it's fibro though.  It's tough to walk.  I can't imagine fibro being this bad.  Do you have hyperreflexia?  I do.

[erpatti]

I don't believe I have fibromyalgia either. I don't have the tender points. I don't believe its chronic fatigue either, besides antibiotics in 1992 for the same I never get infections. As far as I know I dont have hyperflexia. Going to eye Dr. today, if you want to email me its ***@****. We seem to have alot in commom.  Patti

[bengalcats]

Hi I have alot of the same symptoms for 12 or more years now,hand and leg tingling,eye problems,muscle fatigue,muscle and joint pain, weird feelings in my head, bladder tingling ect. i was tested for lyme several times as well as lupus and RA plus dozens of others. they always come back normal. i have been to so many drs and no one can answer why i feel like this. some say its fibromialga, stress, anxiety ect, but i did not have the anxiety untill i first had the symptoms for a long time then i started worrying when it wouldnt go away. the symptoms always come and go and I do not have all of them at the same time. i had 3 mri in 10 years, the first 2 were normal but the last one came back saying i have a very few small punctate T-2 bright signal foci in the subcortal white matter of my brain. to me that meant I had MS but the DR said no and not to worry about the spots but I am not so convinced since i have so many other symptoms.what did the dr say about the spots on your mri? what kind of spots? I requested a copy of my report and it also said i have an arachnoid cyst on my brain but not to worry about it!

[erpatti]

My neurologists saw 2 small not very bright spots on my last Mri . She said it could be  central nervous  sys lyme , active ms. After my spinal tap was neg she said it could even be from migraines.  Who knows . My rheum treats me for lyme and fibromyalgia . I just hope I get better the fatigue has kept me out of work since x-mas. I work in the ER  I am  a nurse. I had similar symptoms 13 years ago. Now its back