Does this sound like C.I.D.P?

    • Anonymous
      July 19, 2010 at 3:21 pm


      Please can anyone offer an opinion of my symptoms.
      This is not anxiety or hypochondriasis – any anxieties I had were as a result of symptoms not the cause.Very calm now but want to get to bottom of this.

      [B]2000 – 2003 –[/B] episode of twitching/fasciculations and muscle cramping all over including throat (only twitching). Diagnosis eventually Benign Fasciculation Syndrome (BFS).

      [B]2003 – 2010 – [/B]totally fine, no symptoms, very happy, no problems.

      [B]Symptoms started – April 2010[/B]
      Saw G.P. – I asked for anti depressants – Seroxat- as very anxious may be ALS
      Symptoms had some similarity to previous episode but felt much more intense.

      [B]Saw Consultant Neuro -May 2010 –[/B] physical exam. Said I had a condition and he would investigate. Didn’t think ALS.

      [B]Brain/spine scan, E.M.G and NCS – June 2010[/B] – awaiting results/follow up with consultant but doc who performed EMG said there no evidence of MND or nerve damage – he wondered if recurrence of BFS – I asked if this would cause my weakness / swallowing problems – he said it wouldn’t.

      Present symptoms :[/U][/B]

      [B][U]Twitches/Fasciculations [/U][/B]
      [B]Jerks[/B] – sudden small sharp movements – foot, hand,arm, leg, whole body.
      [B]Fluttering [/B]– rapid up and down movements – can feel and see these – legs, arms, buttocks, groin, neck, eye.
      [B]Shallow rippling under the skin[/B] – can sometimes be felt and not seen, sometimes seen and not felt. – sole of foot especially – makes toes move , left calf, left hand (back near thumb),and lots in face, tongue, lip, throat.

      Have days where don’t notice much twitching but once there has been twitching usually also cramping/aching and in some areas slight weakness which then remains.

      [U][B]Slight tremor in hands and legs[/B[/U]] – especially left side

      [B][U]Cramps [/U][/B]- 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. Left forearm and left leg been most intense and spasm is visible.

      [B][U]Feeling of stiffness in fingers and toes[/U][/B] – this can ease.

      [B][U]Swallowing liquids feels odd[/U][/B] – feels gurgly as if it wants to come back.

      [U][B]Speech beginning to feel slightly affected [/B][/U]- tripping on tongue especially S and R.

      [B][U]Biting tongue and inside cheeks as I speak[/U][/B] – causing ridge inside of cheeks and mouth ulcers

      [B][U]Cough shallower [/U][/B]

      [B][U]Chewing [/U][/B]slightly affected everything takes slightly longer.

      [B][U]Sensory symptoms [/U][/B]- numbness and tingling in left hand and foot initially -rarely 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 – this sensation is increasing – not painful.

      [B][U]Joints feel vulnerable [/U][/B]- especially knees, elbows, wrists, ankles. Lots of clicking in joints.

      [B][U]Weakness [/U][/B]
      Left hand 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 – below thumb.
      Left foot/ankle weakened – balance slightly affected – widen my gait when walking, dressing. Sole of left foot feels slightly tender to walk on.

      [B][U]Muscle tiredness.[/U][/B]
      Can’t swim /walk as far due to muscle tiredness – normally very active person.

      [B][U]Muscles tone affected[/U][/B]
      Muscles feel softer, less toned. Left buttock very uncomfortable when sitting.
      Possibly some atrophy in left hand and leg.

      Not thinking ALS now because of comments from EMG doctor and I don’t think some of my symptoms are typical of the onset of this horrible disease – e.g. my symptoms are quite widespread from early on, affecting limbs and bulbar area and sensory symptoms rare in ALS.

      Have wondered about Lyme, Peripheral Neuropathy, MS, or CIPD.


    • Anonymous
      July 19, 2010 at 3:29 pm


      Are you getting a full work up from a neuro or rheumatologist? There are so many autoimmune diseases and the symptoms overlap. Believe me I have been researching. All you can do is make sure the docs do a thorough eval: bloodwork, MRI’s, EMG’s, spinal tap if needed etc. I have had all this done (except spinal tap) and all my results are “normal,” yet I have a lot of the symptoms that you mention. (they all started after the H1N1 vaccine). My latest diagnosis is dysautonomia, probably a catch all, for yes, there is something wrong, but no cure.

      You might want to ask your doctor about RA, lupus, MS, etc. Try to rule out things. Just a few suggestions.

    • Anonymous
      July 19, 2010 at 6:56 pm

      I synthesize with you and what you are going through. I wouldn’t dear to offer a diagnosis, but I can tell you that you appear to headed in the right direction. You are taking detailed notes of what is occurring. Make sure you continue you documentation of what occurred, what doctors you went to and what they said.

      Unfortunately it can be a long road to find the correct diagnosis. A well documented factual journal will help.

      Jessica’s recommendation of ‘getting a full work up from a neuro or rheumatologist” will give you a good base line to start from. Don’t lose heart. It may take a while or you may find out a week, or a month. Whatever the outcome, keep us posted.

    • Anonymous
      July 20, 2010 at 3:33 am

      Hi Jessica and Jim.

      Thank you both for your encouragement and kind words.

      Yes I think it is just a matter of time, patience and further tests. It’s just so frustrating not knowing and wondering how this will/won’t progress. But it helps to hear that others are experiencing the same altho also unfair and sad that this is the case.

      I have just had my scan results which just show some disc bulges with no nerve compression.

      Good luck to both of you in coping with what you have.

      Best Wishes

    • Anonymous
      July 20, 2010 at 9:53 am


      I empathize with you because I too have been on a quest for a diagnosis. I was told that I had Mild GBS, but some of the docs question this, partially because I did not have the spinal tap to confirm. I think that I had mild GBS, but what has happened is that the autonomic symptoms have persisted. It is a slow recovery with ups and downs. It is very frightening to be experiencing these symptoms and not know what is wrong with you, will it progress, could it be life-threatening? Unfortunately, the doctors do not know and cannot tell you oftentimes.

      All I can do is take comfort in the fact that my tests have all turned out “normal” except a mildly positive ANA, which noone has seemed concerned about. I have been looked at by 6 neurologists and 1 rheumatologist, and the last neuro told me that I have been thoroughly “worked up” and nothing significant has turned up. Try to evaluate things objectively, and if things seem to get worse, get to the doctor. But if things seem to improve over time with dips or relapses, try not to panic. It is hard to do, I know, but I have now had 7 months of practice. 😉 I am not taking any meds except zofran for occasional nausea and xanax occasionally, but I try to keep my normal schedule and life, and I am also talking with a therapist who deals with chronic illnesses. She helps me to put things into perspective. Hope this helps and keep us posted.

    • Anonymous
      July 20, 2010 at 1:40 pm

      Hi Jessica,

      Did you have a lot of facial symptoms too – cramps/twitches. Is your swallowing/speech affected at all. Mine are but very mildly so probably not noticeable by others. Funny you say about improvements as for a few days I have had less cramps/aches – which is lovely especially having a rest from facial discomfort. But I can definitely feel what I think of as “permanent” stuff i.e. my hands/wrists feel weaker – they hurt as I peeled potatoes today and my left foot makes me slightly off balance.

      I don’t wish this to progress but sometimes I wish some of my symptoms were more visible to others as I really think some people doubt me/ think I’m imagining or they will say things like “Oh yes my hand can ache sometimes.” or tell me they get an occasional twitch but this all came on suddenly and I have something going on nearly all the time.

      Nice to share with you.
      Best wishes
      Jean x

    • Anonymous
      July 21, 2010 at 10:42 am


      I have tingles and twitches in my face, but not as much. When I was really sick in the beginning, I had swallowing issues, would chew and chew meat and have trouble swallowing.

      I totally understand you when you wish it was more visible so people would believe you. And noone can understand what you are going through, they think they do, but not like the people on here. How can you explain this to people who have never had this? I know that before I got this, if someone were to tell me all the symptoms, I would have thought they were crazy. Now, unfortunately, I know…hang in there…..