anyone else have 'dragging feet'?

[Min]

I'm having more and more new neurological symptoms and one of them is - intermittently dragging my feet across the floor when walking, and often tripping myself up. I can't walk far, just in the house & use a wheelchair when out.

Does anyone else have this please? It seems to be a symptom of MS but not ME as far as I can tell.It's no use seeing my GP as he will just sarcastically ask me what I'm 'worrying about now' as he does with all my symptoms.

 

[Adam]

Hi Min

Yes I too drag my feet. I am forced to walk in short steps because in a normal stride my legs wobble. Picture Monty Python ministry of funny walks. I was thoroughly investigated for MS after my viral onset CFS? illness began 14 yrs ago. Initially they talked about some weird form of epilepsy. Then they said myoclonus (lightning jerks in muscle). But when all the conductivity tests MRI's LP's came back 'normal' they dropped me in the CFS waste basket. I, like you, use a wheelchair for distances. For two reasons. I slow to a pace that means it takes me a ridiculous length of time to cover a short distance - therefore it is not practical for me to walk. But also because of the PEM, which hits up to 48 hours after exertion. Do you walk any better in warm weather? I can walk further (and sometimes in a normal gait with longer stride) in really hot conditions...and yet, almost in an instant I will lose 'it' and stagger around like a ten pint drunk (speech is slurred - severe difficulty with language). I still see my infectious diseases consultant twice a year, but I don't even bother asking about any further investigation. They did all the standard stuff and I heard 'don't worry, we'll get to the bottom of this' so many times. But they didn't get to the bottom of it. I would say atypical MS. I doubt the neurologists would. I imagine there is an overlap with CFS/ME and MS. About a year before viral onset I got my first sign all was not right. Lost use of legs for about an hour, virtually falling to floor with every step - this was after walking about 200 yards normally. Weirdest thing. I tried to rationalise about it at the time. Thought maybe a trapped nerve. Ha! Thought wrong obviously.

Anyone else with unusual gait, neurological type symptoms please share. I sometimes think I am only person to have these specific problems with CFS diagnosis. It only goes to show that CFS diagnosis is a complete nonsense, unless you are Psyche doctor who believes if all your tests are 'normal' then it has to be all in your head.

 

[xchocoholic]

Mine used to do this too, esp the right foot. One year after giving up gluten this stopped ... most of my nuero, if not all of them have been from gluten. You dont' have to be a celiac to have gluten intolerance ... Check out gluten ataxia and see if it applies to you.

Many people have negative reactions to soy, dairy, corn or other foods or chemicals that they commonly eat. Dogtorj has some good info on this. We have a thread here with links to his info. It's Food intolerances by a vet .. hth ... Marcia

PS. Many doctors are still clueless on how foods can affect us. But the word is getting out because so many people, including our doctors, are on the internet now ... : )

 

[Mithriel]

I get this Min but then you won't be surprised :Retro smile:

I think Adam may be right about atypical MS.

Just one thing to think about. This can happen with diabetic neuropathy. It was actually the first sign my friend had that something was wrong though her ankle and leg muscles were wasting too.

Mithriel

 

[Marco]

Not dragging as such and I'm nowhere near as badly compromised in my mobility as many.

When I get a really bad attack of exhaustion I end up bent over, shuffling and taking tiny steps barely lifting my feet off the ground. I also bizarrely develop a limp on my right leg. I have never injured my leg and don't feel any pain as such, muscle tightness, cramp etc. It just feels as if my legs are no longer connected to my brain and I feel as if I'm having to walk very carefully on uneven ground.

The only remedy is bed rest and usually normal gait returns soon afterwards.

 

[Min]

Thank you all for your considered answers & for sharing your experiences - the floors in my bungalow are hard & these days I'm often black & blue.

Adam, all my symptoms are better in warm dry weather - is the test for atypical MS an MRI, or won't it show?

 

[Adam]

Min

I think when they say atypical MS they mean in a subjective sense. No positives in CSF from LP or lesions in brain scan etc. but many of the symptoms 'mimicking' MS. This is where XMRV will prove very interesting. I imagine there will be studies into XMRV prevalence in MS sufferers. Anyone more clued up than me (shouldn't be too difficult!) on MS ME/CFS overlap?

Marco

The brain not connected to legs feeling/sensation is very familiar. If the cause is not neuro in the sense of structural damage to CNS then mitochondrial abnormalities might explain this symptom - and a host of others too.

Xchocoholic

I will definetly look into gluten ataxia. I have IBS. Totally non-existent lactase production so on non-dairy diet. I have been tested for gluten - guess what? Normal.

Mithriel

Diabetic neuropathy. I have intermittent spells of hypoglacaemia. Again tested negative for diabetes. You would think they would find at least one positive somewhere apart from just lactose intolerant! I do have Gilbert's Syndrome. Which I understand is perhpas more common in CFS/ME pop. than general pop. but seems to have been dismissed by Peter White and chums as not having any relavence.

 

[xchocoholic]

Hi Adam,

If you can believe it, I don't even have gluten antibodies in my blood !!! And I'm Miss Gluten Sensitive 2005 ... well I would've been if there'd been a contest ... lol ...

I've been diagnosed as a celiac based on residual damage, my DQ2 gene and my reaction to the GF diet.

The antibodies do show up in my stool tests though. In order to make sure that the test would pick up my gluten antibodies, I ate few of those "GF" foods that aren't really gf and my results were high.

I think the gluten file explains how stool testing is better than serum tests ... just google theglutenfile ...

and of course, eliminating gluten or any other food intolerance is a good way to find these too ... I used a combo of tests because I don't know how my body reacts to egg whites but I do have antibodies to them ... and I can see the raccoon eyes that I get from dairy and yet I didn't have antibodies to dairy.

tc ... Marcia

 

[kaazoom]

I have gait problems. My legs are very stiff when I walk and I sometimes look as if I have Parkinson's Disease. My right foot also tends to drop. I have had a whole batch of tests including a couple of MRIs, Lumbar puncture, plus a EMG in a few muscles in my legs and feet, numerous blood tests etc. I always fiond it comforting to to know other people with a ME/CFS diagnosis also have these type of problems.

My symptoms are almost entirely neurological, I am not aware of having any immunological problems, no recurrent sore throat or high temperature. In fact my temperature is normally a little low.

Paul




http://www.youtube.com/kaazoom