What can a neurologist do?

[Themaid]

I have P.A. and have for a long time been experiencing neurological problems. Most specifically with my balance, dizziness and foot cramps. I visited a neurologist who gave me a nerve conduction test which showed only minimal nerve blockage. Then he sent me on my way. My GP then sent me to physical therapy which was a complete waste of time. I am exactly the same. Same symptoms. So, what is the point of seeing a neurologist?

[pvanderaa]

Are you on B12 injections? Folic acid and daily multivitamin?

Sounds like neurologist did just what they typically do.

Are you keeping a logbook of the daily severity of your symptoms. You need this as repair is very slow i.e. months and years. If you can make your own severity assessment you may look back in the logbook and see improvements. Typically a symptom disappears and you just get on with life and feel worse for having done too much. When you look back in the logbook, you then realize it’s gone or has just reappeared if things go downhill.

Another way to use the logbook is to be able to compare severity scores on the same day after each injection. This method more or less eliminates the effects of the roller coaster ride after each injection. You monitor progress month to month or cycle to cycle of injections. This helps with short term memory loss as well.

[Themaid in reply to pvanderaa]

Thank you so much for your reply. Yep, I’m keeping a log book, up to date on my co-factors, injecting methylcobalamin every 3 to 4 days, following a gluten free, dairy free, sugar free, alcohol free, fun free diet. Trying to take a nice walk on the days that I can. Trying to avoid stress. That last one is the hardest! I guess it’s just a waiting game at this point. So I guess a neurologist visit is just to rule out anything else.

[fbirder]

There are scores of possible causes for your neurological symptoms. Your examination has ruled out almost all of the really scary ones.

[Themaid in reply to fbirder]

Thanks fbirder. I guess I’ll just soldier on like everybody else. Ugh! Such a frustrating process. I hate when the doctors look at me like I’m making this stuff up. I guess we all just have to get used to that part, too.

[Brookey in reply to Themaid]

I have stopped going to my gp, as I too, feel he thinks I am wasting his time. I feel so Ill, alot of the time all I really want to do is go to bed. I think I have an underactive thyroid (weight gain, fatigue, sensitivity to heat), and if I see a different gp, I'm told to see my own gp. What's the point?

[Sleepybunny in reply to Brookey]

Hi Brookey,

Just wondered if you are getting enough B12.

I think you mentioned injections every 3 months on another thread.

In UK, if you have neurological symptoms, you should be getting jabs more often than every 3 months. Even if you don't have any neuro symptoms, guidelines suggest every 2 or 3 months. GP may not know that guidelines changed a year or so ago.

I wrote a very detailed reply on another forum thread with links to lots of B12 info eg B12 symptoms lists, B12 books, B12 websites, UK B12 documents/articles, sources of help if under treated etc

healthunlocked.com/pasoc/po...

Hopefully some of it may be useful.

[Brookey in reply to Sleepybunny]

Hi Sleepybunny,

Yes you did, and thank you for that. I will do as you suggest and look further into my symptoms, i assume d that as I was having B12 that my symptoms were due to something else. t would be lovely to know why I feel so under the weather .

Many thanks

[Sleepybunny in reply to Themaid]

Hi Themaid,

Just curious as to whether the neurologist checked your proprioception sense?

Problems with proprioception (awareness of the body in space) can be associated with b12 deficiency.

Two tests that help to diagnose proprioception problems are Romberg test and walking heel to toe with eyes closed. Vital that these tests are only done by a doctor due to risk of loss of balance. Videos of these tests are on Youtube.

If no tests are done with patient's eyes closed then unlikely that proprioception has been fully tested.

I had mild problems with proprioception. For example I was wobbly when it was dark or my eyes were closed or the view of my surroundings was blocked. I used to fall off the pavement if someone walked directly towards me and I couldn't see beyond them. I used to misjudge distances when I was reaching for things which resulted in broken crockery.

"I hate when the doctors look at me like I’m making this stuff up"

I empathise with you as had to cope with that type of attitude for years. I was diagnosed with hypochondria. I saw multiple neurologists who missed typical symptoms of B12 deficiency with the partial exception of one who thought it was a possibility but still didn't diagnose me.

The reason I mentioned proprioception was that I do not remember any of the neurologists I saw doing the Romberg test or walking heel to toe with eyes closed test.

In fact I don't remember any tests with my eyes closed....although that could just be a problem with my memory.

Have you ever been assessed for SACD, sub acute combined degeneration of the spinal cord?

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Link to a detailed reply I put on another thread on forum with lots of b12 info.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Themaid in reply to Sleepybunny]

Oh my dear Sleepybunny, you are such a storehouse of information. Thank you for that. I did have a Romberg test at the ear, nose and throat doctor when I had an ear infection. I failed miserably and was given antibiotics and told it was an inner ear infection which was affecting my balance. Years later the ear infection has long since cleared up but my balance is still off. I’m handling most of the test scheduling myself so your info is most welcome. Also, I’m in the US so much of this testing is very expensive even if covered by insurance. So much cheaper and sensible to just keep injecting B12 and working on my mental health.

[Sleepybunny in reply to Themaid]

I really hope you find a pattern of treatment that suits you.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in US and other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

B12 Facebook groups mentioned in next link

b12deficiency.info/very-use...

B12 Films/Videos

b12deficiency.info/films/

[Hidden in reply to Themaid]

Hi Themaid. I too am from the USA and I hear you about the cost of seeing all the specialists. I am on medicare and I also have a supplement and a Part D for my medications, but even with paying premiums for all of that, I have co-pays for everything. Every time I go to my primary doctor with a problem he is quick to want to send me to a specialist, they want to do a lot of expensive test, for which I have more co-pays. I get the results, but if I have questions, I get their nurses replying with half assed answers and some of the questions never get addressed. I then do as much research as I can do with the internet and books and I find out more than the doctors were able or willing to tell me. My healthcare and cost of medications are the most expensive things I have to pay for in a month, and I still do not get the satisfaction of getting answers to my questions. I am living check to check with sometimes a week or two with no money at all. I have cut back everything that I can cut. Now I am thinking I will just have to take what my primary doctor can tell me and get my labs done and that will have to be enough. I am so disappointed in the costs of everything, and I know I am not alone. What scares me is what it will be like in 5-10 years. I have PA so the B12 shots will have to be done. The rest? well we'll see. I have my faith so I will keep being grateful for what I do have, and when I count my blessings, I have much to be thankful for, so I will concentrate on that and try and stop worrying so much. I too will keep injecting and hope for the best. Best of luck to you and God bless you.

[Themaid in reply to Hidden]

Oh my dear sasseep47. Your story is so similar to mine. Endless specialists, endless tests, endless copays, plus I see a functional medicine Dr. who has been by far the most helpful. But of course she does not take insurance. I actually had a doctor recently tell me that I seemed stressed out and that I ought to take a nice vacation. I would love to. But I have such high medical bills (I’m a recent cancer survivor) and a lot of my time and money is spent traveling to visit and care for my mother who has dementia. Plus I have two kids in college! I can’t really afford a nice vacation! I know a lot of people on here complain about the NHS but they really have no idea how fortunate they are. I’m taking my concerns and needs to the ballot box. Faith is just not enough these days. Wishing you all the best.