A little worried - Advice before appointment

[lollypop]

Hi there,

I write this post looking for some guidance with respect to an upcoming appointment with a neurologist. I want to ensure I get out of the appointment all I need to. I very much appreciate anyone who takes the time to reply.

Rather than write an essay on the 9 week history of my symptoms to this point, let me try to be brief.

30yr old female. Never smoked.

*2 visits to ENT. First told possibly viral. Camera up nose and down throat revealed no cysts, nodules etc, but a redness which was attributed to my cough. When I got not better after 3 weeks- ENT referred me for video strobe of vocal chords (Diagnosis: "Dysphonia - Edema of vocal chords" - no explanation of what might cause this) and a swallow test (happening next week).
For my other symptoms - listed below- she suggested I see my PCP. I don't have a PCP so I attended my GYN (the only Dr. I see on a regular basis (4 times ever) and trust). She has referred me to a neurologist. My appointment is tomorrow.

Currently presenting with:
*Fatigue
*Voice change - hoarseness. Cant sing like I used to. Generally tone has changed in the last 2 months.
*Lump in the back of my throat - cant seem to clear
*Swallow issues (always need two swallows and need to cough more often than not when eating & drinking)
*Feeling in tongue (around the edges like my tongue is burnt)
*Effort to chew. Often feel jaw 'locking' or stiffening
*In my head at least, I feel like my speech is different. Not slurred speech, but rather my fluency is not what is used to be. I've also noticed 'bubbles' developing at the side of my mouth when I speak.
*Breathing issues - though not constant
*Cramp in right leg - behind knee but also above and below to the point that I feel like tendon is torn
*Muscle bubbling or popping - widespread - but especially in right leg. Sometimes in the chin, right hand, buttocks.
*Feeling of tightness/cramp in muscles at night time - like the freeze suddenly and then let go
*Feeling of 'cold' or 'naked' fingers - especially in the morning. Need to warm them up to get them working
*Weight loss
*No appetite (not sure if this is related to the discomfort of eating with my swallow the way it is)
*Headaches (dull ache back of head) and intermittent ear aches

Sorry - this seems like a long list and I've no idea if all the symptoms are even related.

Does this sound like ALS to anyone?

I have an appointment with neurologist tomorrow. I'm not sure what their specialty is - but what questions should I be asking? Should I go in with this list of symptoms, or does that make me seem like a crazy person?

I've no history of anxiety or depression. I'm just rather concerned as this is just not me, and I've never felt as off as I have the past two months.

Thank you all for your time, in advance.

 

[Nikki J]

Did you read the sticky posts. There is read before posting for symptom questions and getting a diagnosis. The latter speaks of ways to prepare for the appointment.

It does not sound like ALS to me but your neuro will examine you and tell you what is next.

General appointment advice. The big question is what is wrong with me? Not is this ALS? Do list your symptoms. Be very specific as to when they started and what you can/ can't do. The more organized and specific you are the better.

I encourage you to get an internist pcp.

 

[lollypop]

Thank you, Nikki. I had read the first sticky post, but not the second. My apologies. I'll be sure to read that now.

 

[lollypop]

Just to follow up after Neuro appointment. She is referring me for an MRI of my brain and my L Spine. She also wanted me to do an EMG of my right leg, as that is the one I'm experiencing the cramping/tightness in, and the most muscle 'rippling'. She didn't seem to know what could be going on. She prescribed some muscle relaxants.

The EMG technician was actually available straight away and I was able to do it then. Glad I didn't have too much of a build up because those shocks are not very pleasant. He did both legs.

During the needle part, he got me to bring my toes towards my head and then point them away - at this point (whilst on the right leg) the eyes in his head kind of popped and he asked me do I suffer from a lot of back pain? I don't. He asked if the issue is with my right side, and I confirmed that was where the most of my discomfort was. He said I should be having back pain, as that's what's what was being indicated?
I did ask him what he thought it was at the end and he said "maybe a pinched nerve".
I don't get the results until I go back to the Neuro in a month, after my MRI also.

I guess there's nothing I can do in the interim. But is anything I described above a cause for worry in anyone's opinion?

I'm finding the 'pinched nerve' analysis a little hard to believe, given the plethora of other symptoms I'm having.

Anyway, any feed back would be greatly appreciated. Thank you all.

 

[Atsugi]

There is no reason to think of ALS. Your list of symptoms is weird, but it isn't ALS at all.

 

[Lkaibel]

Whatever comes of this, please do get yourself an Internist or a Family Practice Doctor. Women need them too. Gynecologists are for Lady Parts, they are not substitute Doctors for rest of you.

What you are describing is weird, but I for one don't hear ALS in what you describe.

 

[Firefighter58]

No ALS, but something requires an MD attention
Al

 

[lollypop]

Thank you, everyone. I really appreciate the replies.

I agree, there's definitely something going on with my symptoms. I feel like I've been hit by a bus most days. What is most worrying for me is my voice seems to be getting weaker, with no improvement at all. Every morning especially it takes me so long to clear my throat and my chest feels so heavy.

I'll try find an internist to see if they can shed any light on what might be going on.

Best wishes.

 

[lollypop]

Re: A little worried

Hi there,

Back again. I got the results of my MRI of Brain & Lumbar spine to my "patient portal" and am hoping for some input. I understand folks aren't doctors, but having to wait three weeks for the follow up with the Neuro seems so long. She will also have the result of the EMG on the legs at that time.

I have also had my swallow test in the meantime - no results yet, but a reminder that the results after the camera on the vocal chords was "Dysphonia - Edema of vocal chords".

With respect to an update on my symptoms, this week is week four of the 'discomfort' in my right leg. It feels like a cramp almost, or a pulled muscle. Behind knee, calf and thigh (back) affected. Fine to walk but feeling mostly when sitting. The cramping doesn't hurt necessarily, its just uncomfortable.

Muscle popping continuing, more intense as time passes, 80% in my right leg, 10% in my left leg, and then 10% random (thumb, chin etc.). Cant feel when I'm "active", but when at rest. Driving me a little nutty.

Still extremely fatigued. Washing the dishes wipes me out.

Issues with throat/voice/swallowing unchanged. Perhaps the "tickle" at the back of the throat comes more often.

MRI of Brain

FINDINGS:

No acute infarction, intracranial hemorrhage or mass. There is focal linear susceptibility seen within the left frontal lobe extending from the anterior horn of the left lateral ventricle to the frontal cortex (series 10 image 18-20. There is no corresponding signal abnormality seen on the T1-T2 or FLAIR sequence. No abnormal restricted diffusion is seen. This finding is therefore likely secondary to artifact. No other areas of abnormal susceptibility is demonstrated. The ventricles are normal without evidence of hydrocephalus. There are no extra-axial fluid collections. The skull base flow voids are present.

There are inflammatory changes mastoid air cells bilaterally. Retention cyst seen in the right maxillary sinus with bilateral ethmoid air cell maxillary sinus mucosal thickening. The visualized soft tissues and osseous structures appear normal.

Impression:
focal linear susceptibility seen within the left frontal lobe extending from the anterior horn of the left lateral ventricle to the frontal cortex (series 10 image 18-20. There is no corresponding signal abnormality seen on the T1-T2 or FLAIR sequence. No abnormal restricted diffusion is seen. This finding is most likely related to artifact.. Otherwise unremarkable MRI brain.

MRI of Lumbar Spine

FINDINGS: There is a transitional vertebral segment and counting from the last rib designate sacralization of the L5 segment. If intervention is contemplated correlation with plain film imaging is recommended for accurate level localization. There is minimal retrolisthesis of L4 on L5. Decreased height and signal of the L4-5 intervertebral disc space is seen. There is decreased caliber of the L5-S1 intervertebral disc space. The distal cord and conus are unremarkable with the conus seen ending at the T12-L1 level. Mild disc bulging facet and ligamentum flavum hypertrophy are seen at multiple lumbar levels. The paravertebral soft tissues are normal..

EVALUATION OF INDIVIDUAL LEVELS DEMONSTRATES:
L1-2: No focal disc herniation spinal canal stenosis or neural foraminal narrowing.

L2-3: No focal disc herniation. Mild facet ligamentum flavum thickening is seen. No significant neural foraminal narrowing is seen. Central canal is patent.

L3-4: Facet hypertrophy is seen bilaterally with mild neural foraminal narrowing. There is flattening of the ventral thecal sac without significant central canal narrowing.

L4-5: There is a broad-based central disc herniation which flattens the ventral thecal sac and extends into the proximal neural foramina left greater than right. Bilateral facet ligamentum flavum hypertrophy is seen with mild to moderate left greater than right neural foraminal narrowing and encroachment on the L5 nerve roots within the ventrolateral canal and thecal sac left greater than right.

L5-S1: No focal disc herniation spinal canal stenosis or neural foraminal narrowing is seen.


Impression:
Transitional vertebral segment and counting from the last rib designate mild sacralization of the L5 segment. If intervention is contemplated correlation with plain film imaging is recommended for accurate level localization.

Broad-based disc protrusion L4-5 level seen central and mildly eccentric to the left with narrowing of the proximal neural foramina bilaterally and the ventrolateral canal. Mild encroachment on the L5 nerve roots within the ventrolateral canal is seen. Mild facet and ligamentum flavum hypertrophy also seen at this level.

Mild degenerative changes seen remaining lumbar levels as detailed above.

Apologies for the long post...
So it seems theres quite a lot going on with my L Spine. I cant say I've been terribly bothered by lower back pain - but its probably come and gone over the last year specifically. Is such "degenerative change" common in a 30 year old, not particularly active female?

The last thing I want is to go through unnecessary surgery for something that's actually not going to make a difference long term. I've read that somewhere around 50% of ALS patients have "unnecessary" surgeries on their path to a diagnosis.

This is not me wishing for the worst. I guess I'm just a practical person and am having trouble that all these symptoms have come within a couple of weeks of each other and must be connected somehow - why else would I be having voice and swallow issues with "degeneration" in my spine and crazy muscle rippling in my legs?

Any feedback would be gratefully received.

And, fyi, I've an appointment with a PCP, but again not until mid June.

 

[lollypop]

Sorry for posting again, but I've some specific questions (while I wait for my follow up appointments to get results of EMG on legs and interpretation of MRI's) that I'd be so grateful to get an insight on:

*What exactly does the "twitching" people refer to feel like? My muscle 'movements' are more like ripples or bubbles under my skin, even though I cant see them. I don't experience any jolts of my limbs. In ALS, do you see the fasciculation's? Generally I can only feel them when I've clothes on, I cant feel them otherwise (some exceptions like below)
*Are they constant or intermittent? I feel like I have ones of varying strength - I had a powerful one in my neck/throat area last night (first time noticing one there, and makes me nervous as I feel my swallow is getting worse every day, mostly with just saliva. I seem to have subconsciously found a method of swallowing liquids that is working for me at the moment. Tablets still don't go down easy however.)
*Does activity make the fasciculation's worse in ALS, or would they be present and constant regardless?
*Are tremors or shakes a symptom? I cant hold my right leg out for longer than 3 seconds without it shaking, uncontrollably. I discovered this whilst trying to take my mind of everything and taking a light class at the gym.
*Do cramps in ALS come and go or are they constant?
*With respect to weakness, is it the case that one day a limb just will not work? Is there no feeling of something not being quite right in the lead up to that moment?
*Lastly, I've been trying to put life insurance in place. This was something my husband and I were discussing putting in place (for both of us) for a while. Question is whether I should delay my follow up appointment's with the neurologist and ENT until after my medical with the insurance company (which I'm hoping I'll pass), or just continue with trying to get answers asap.

Once again, I appreciate those reading and replying.

 

[lgelb]

Not to be a downer, but under the commonly-applied "prudent person" standard, you may well not be eligible for new coverage since you have already had testing for these symptoms. But if you want to pursue it, I would certainly do the insurance exam first.

As for your spine, I don't see any clear indication for surgery from what you posted. But no one should have spine surgery (or much of any other surgery) without two reputable opinions that are in different organizations.

Best,
Laurie

 

[lollypop]

Thanks, Laurie.

I guess I understood that as I don't yet have a diagnosis I don't have a pre existing condition so to speak? Perhaps I should do some further research on that before wasting money (and time).

 

[lollypop]

Hi folks,

Its been a couple of weeks since I've posted. Unfortunately I cant report any improvement in my symptoms. If anything I've added to the list. The twitching continues a pace, but is no longer 80% on my right leg, but rather spread out to my chin, bridge of my nose, lower back, tongue and hands (I can see the muscle contractions on the side of my left hand ulnar nerve underneath pinky). I've noted a strong tremor in my hands when trying to hold a phone, cup etc. I've a very odd sensation in my right index finger for over a week now. Its painful to curl and straighten. Hands are swelling and going red frequently but when they cool down its almost as if they are weaker. I don't yet believe I show any clinical weakness, but It certainly requires more effort to take the milk from the fridge!!! Sleeping has become very uncomfortable. My ribs ache when I try sleep on my side so I'm essentially on my back for most of the night. Cramping in legs (and now my fingers) continues.

Anyway, I got the results of my voice and swallow test. I have spoken with the Dr. about these but that was before seeing the results myself today. She was unsure what's causing ENT issues, but has suggest trying acid reflux meds. If only my voice and swallow issues were isolated, I may be hopeful this would work, but I'm of course skeptical. She is aware of my other symptoms but is sending me to the other doctors to see if and how they fit with my voice/swallow issues.

I've attached the reports. I know an EMG is the magic test for ALS, and I get the result of that tomorrow (legs only). Needless to say I'm dreading the appointment, but looking forward to perhaps having a diagnosis. I know the EMG will be "abnormal", given the reaction of the technician on the day of the test. I'm hopefully going to be brave enough to ask why its abnormal or what the result indicates.

Anyway - do the attached reports indicate to anyone a cause for concern? I guess I'm particularly worried by the noting of "ventricular obliteration".

Thanks all, for your engagement so far. I hope I ultimately don't belong on this forum, but appreciate the time spent by those who respond when I'm sure they'd rather not be here either.

 

[Firefighter58]

Lollypop ,we are all interested in your situation, but you are too long winded, like most others a paragraph will do. Long becomes very boring and most will not read it.
Al

 

[lollypop]

Apologies, i'll be more brief.

Results from my EMG are attached. Disappointed and frustrated after appointment with Neuro. Was rushed in and out. I could tell she had not reviewed my results before I arrived and just suggested physical therapy because MRI indicated a herniated disc. I have no back pain. I had no opportunity to ask questions or elaborate on my ongoing symptoms.

If someone can help interpret the EMG results I'd be grateful. I'm worried about it noting "increased spontaneous activity, motor unit amplitude, polyphasic potentials and diminished recruitment" but I don't know what this means!