What could this be?

[JeanieB]

Hi,
I'm in U.K.

I have been having symptoms for just over 3 months and have had brain/spine scan, E.M.G and NCS. I am still awaiting results from my original consultant but the doctor who performed the EMG said there was no evidence of MND or nerve damage apart from my carpal tunnel.

I was wondering if anyone could offer an opinion and hopefully reassurance if I describe my symptoms. I requested anti depressants when my symptoms first began as I was very worried about ALS. So am aware some bits of symptoms could be side effects. I am quite calm about things now so don't feel that anxiety is the cause.

Present symptoms are:
Fascics - these can be more like sudden little movements (? myoclonus - ?tablets), but mostly fluttering or up and down movements in the muscle which I can see and feel, or shallow rippling under the skin - can sometimes feel if leg in certain position and can sometimes be seen. Cannot see rippling in sole of foot but can feel it and can see toes moving side to side. Have days where don't notice much twitching. Areas that I have noticed twitches - left arm, left leg, right ankle area, left foot, left buttock and groin, throat, tongue, face, left eye (had twitchy eye in past but seems to happen bit more often)

Have slight tremor in hands , which seems to be getting worse (?tablets).

Cramps - lots of areas - can be very short lived, or can continue for ages leaving the area very achy - both legs and feet, both arms and hands, buttocks (all these more so in left), tongue, throat, jaw, cheeks.

Feeling of stiffness in hands and toes.

Swallowing liquids feels odd - can do it but get lots of wind, feels gurgly and as if wants to come back. Throat stings sometimes.
Speech beginning to feel slightly affected - tripping on tongue
Biting tongue and inside cheeks as I speak and I think when I sleep - mouth full of ulcers
My cough feels shallower - I know it's not pleasant but I get a lot of phlegm in the morning so used to cough up each morning. This is a struggle now.
Chewing feels slightly affected - notice if chewing raw veg/nuts - take ages.

Sensory symptoms - had some numbness and tingling in left hand and foot initially but not so much now - if I do seems to be after lots of cramp in that area
Bits of tingling - short lasting and not often - eg fingers
Mild burning sensations - various areas - across top of back, limbs.

Joints feel vulnerable - especially knees, elbows, ankles. May have bits of arthritis that could complicate this but not aware of this before except in right knee. Hear lots of clicking in joints - especially right ankleas I come downstairs.

Weakness - left hand feels slightly weakened and clumsy - drop things and hurts in hand and arm when pick up objects e.g. mug of tea. Hand sometimes feels tender to touch. Left foot feels as if not holding me steady e.g. when getting dressed and lifting up right leg. Feel my walking slightly odd to balance myself.

Muscles feel softer and wonder if signs of atrophy - behind left knee, left arm and hand, face looks a bit droopier than normal, my left buttock feels uncomfortable when sitting and and sole of left foot sore on standing - wonder if atrophy - buttock looks a bit saggy.

I was scared of coming on here but found it helpful. From what I have read e.g. from Wright, if my doctor saying EMG not showing evidence of MND and many areas being affected so soon,then this rules out ALS (lower motor neuron problems) and if faciculations then this rules out upper motor neuron problems. I know someone with some very similar symptoms but further down the line and he has recently been told CIDP - wondering if that's what I have.

Really appreciate anyone responding. Sorry so long but didn't want to miss anything out. Taking mum shopping now.
Best Wishes to all.

Jean

 

[wright]

Hello Jean

As you have read on the forum, I have stated that ALS does not present with global symptoms as you have indicated.

As you have read on the forum, I have stated that a clean EMG rules-out ALS.

As you have read on the forum, I have stated that ALS is either bulbar-onset or limb-onset or thoracic-onset . . . not two or three of those at the same time.

As you have read on the forum, I have stated that sensory symptoms typically rule-out ALS. Very, very, very rarely does ALS present with sensory symptoms, especially in its early stages.

You certainly have symptoms and what they point to is anyone's guess but it can't be CIDP, because your EMG would have indicated it. It could be a nasty virus or something autoimmune. Just do your best to relax, because your story doesn't sound life-threatening to me . . . and please let your physicians determine what is happening to you . . . not the internet.

 

[JeanieB]

Hi Wright,

Thankyou very much for taking the time and for the reassurance. I was hoping you would see it as you seem very knowledgeable and also very passionate about people not misinterpreting symptoms! Do you mind me asking if you have had symptoms in the past? Are you medically trained?

It's very difficult to not try and find answers for yourself when appointments are months apart. Not even sure if I am going to get another. My consultant's secretary said if tests look normal i may be discharged with letter to G.P! I am naturally someone that likes answers to things and if it involves anything that could affect my family even more so. I am an occupational therapist so have some knowledge of physiology/neurology but learned quite a bit about MND several years ago by default as I had PNH/BFS . Not had symptoms for 7 years. Neurologist at first appointment thinking it is that this time too but the swallowing and weakness don't fit at all.

I am much more relaxed than I was initially and enjoying life again but I am certain this is something progressing even though slowly and want to know what it is and receive treatment if necessary.

My friend with CIDP has only just been diagnosed after 2 years of tests. He had an EMG a long time ago. I thought that CIDP could be missed sometimes on EMGs?

Thankyou again. You must have put many peoples minds at rest over the years.
Regards
Jean

I

 

[Zaphoon]

I would recommend that you focus on the possibility of your problems being caused by something less severe. Anxiety and stress could be a probable cause. How about something viral just passing through? A bit of undigested beef, perhaps (this was how Scrooge preferred to think).

How about something like Peripheral Nerve Hyper-excitability? It's a real nuisance, for sure but a lot less harmful than ALS.

Anyway, if you minimize the threat, you will lessen your anxiety level. There are some on this forum that have spent quite a bit of time in "Limbo Land" awaiting a diagnosis. During this time, many have chosen to believe they have been suffering from PNS (pinched nerve syndrome).

There is a thread regarding this entitled, "I Have PNS".

So, how about it? Why not just blame it on PNS for the interim?

Oh, wait! I see you've already been told you have PNH/BFS. I'm waiting to hear the same good news!
(trying to lose the current DDX of PLS)

Zaphoon

 

[JeanieB]

Hi Zaphoon,

Thank you so much for your kind words. There are a lot of very brave and caring people on this site and I feel honoured to be able to ask for advice from you all.

It may not have sounded like it in my message but I am actually not in any kind of anxiety state anymore - certainly was until very recently but tablets kicked in, and lots of support and prayers from family and friends helped.And my anxiety/depression came on after the physical symptoms began. I have been convinced not ALS now I have the facts/ reasoning behind it (thank you Wright and other info on forum) but can't accept it's PNH as this feels very different to when I had that 10 years ago.Quality of cramps and fascics very different - more frequent and intense and my weakness is not subjective. There is a gradual progression but that doesn't mean I think it is life threatening. As you say just in limbo land and making the most of each day with my family as I feel very fortunate now. Popping into this forum helps to remind me of that so hope people don't mind.Can't help continuing to wonder but it isn't taking over my life. I have just popped back on here quickly before going to bed - 11.20 p.m. in England. Have been busy doing some more Family Tree Research on computer - my passion! If anyone out there interested and needs anything looking up in U.K. i would be happy to help.

Is your diagnosis still under question? Hope yours is PNH after all. I will certainly look up PNS.

Very best wishes and thank you again.

Jean
P.S. Sorry can't be beef either - I'm vegetarian! Maybe a piece of undigested sweet potato! I love the Scrooge story too!

 

[Zaphoon]

My current records with the V.A. are rife with comments regarding PLS but it remains simply a ddiagnosed and not a diagnosed. I've had some pretty bad spells along the way in the past 3 years with legs and shoulders but the shoulder problems have been attributed to bilateral frozen shoulder syndrome. My left has just about fully recovered but the right shoulder remains partially frozen.

My hands have now been cramping up and fascics have taken root in my abdominal muscles. I'm hoping they help me to develop 6-pack abs.

I've asked about the possibility of this being BFCS and at least one neuro poo-poo'd the idea saying I didn't meet the criteria. I'd like to think, "Who am I to disagree?" but I still think it's some sort of PNH.

I wake up each morning with my legs screaming, "Good morning! How about getting up and straightening the knots out in us!". So, I comply with their request and after a few minutes, the screaming subsides a bit and away we go to enjoy another day and another round of cramp candy (baclofen).

Whatever it is, is now just a nagging nuisance to me and remains an unsolved puzzle for the neurologist to solve. Just keep writing those scripts for the baclofen, doc!

 

[Daphne]

Zaphoon, thank you so much for mentioning Peripheral Nerve Hyper-excitability. I've been experiencing Muscle twitching and cramp variants of nerve hyperexcitability.

I have been experiencing every single symptom. My rational mind keeps telling me that I don't have ALS, but sometimes I work myself into a lather. I'm not just randomly crazy; I'm part of the care-taking team for my brother, who is suffering from real ALS. Strangely, my symptoms began appearing 6 months after his diagnosis. This makes me suspect that PNH could be triggered by stress. I teach college full-time, I'm in charge of an academic department, I have four busy sons and a very dependent mother, a somewhat depressed husband, economic instability due to this recession, and now I have my brother to look after.

One symptom the PNH website didn't mention was that many of my twitches occur rather as a "revolt" from my body's position. For example, if I lie on my right arm, then the right arm will twitch. If I cross my legs, my thigh will twitch.

I am assuming that twitches from ALS aren't this purposeful!

Thank you everyone who posts on ALS forums. Whenever I go too far in my worries, I visit the forums and I always walk away calmed down. You help me keep my perspective.