Still scared of ALS

I wrote about my breathing problems before. Well, anyone would get problems with light breathing if they had not peed for three days like I had not. So now I've found myself with overflow incontinence instead. I do not feel the urge to go and pea anymore. So sad. And also I was watching my tongue today. It has tremors both when I put it to the left and right. I have fasculations and tremor constantly around my body, moving or not. Even in the face. When I smile the smiling muscles start twitching like crazy.

I hope it is not ALS, seems more likely to Multiple Sclerosis. But still. Not fun. Also some german tests showed I have cellular activity for Borreliosis and Ehrlichiosis. My appointment with the Neuro is not until the last of January. Feels so long.

Sorry to hear of your troubles Gusflower. Try to hang in there. I know a month can seem like forever, but its not too long.
If at all possible, try not to constantly be thinking about it all- I know, easier said than done- but you will drive yourself wild doing this.
Good luck to you and let us know any updates

It's just that I've been up and down about this for the last 2½ years. Trying to convince doctors I need a thorough investigation. Losing the urge to pea was my first real loss of function, and it feels so gigantic. Before that I was searching for answers this summer and it came to Ehrlichiosis and Borrelia with bloodtests.

Gusflower
I do not remember all your previous posts, but would like to add that bladdercsymptoms like yours do occur in Ms, and sometimes as the only initial symptom. I have a patient at the moment that spent 2 years seeing urologists before a smart one sent him to a neurologist. He had an MRI and it showed he had MS. It is tricky to diagnose as it seldom presents just in the bladder.
I may be off base and you may have already been investigated for it already.

Best of luck Aly

I see you are from Sweden.We had a Swedish neurologist and his family join us for Christmas dinner. I was in Sweden in October, what a lovely country you live in

I too am still scared of ALS diagnosis. Aly I hope you can shed some light for me as I see that you are a neuro nurse. I have been having muscle twitching for about 3 months now. Started out slowly a hit here and there through out body and then full blown head to toe but once I went to PCP and they put me on Klonapin they slowed down quite a bit but are continous in both legs with a few that hits my upper body on occasion. I had an EMG done approx 4 wks into twitching and results came out as normal but in the back of my mind I keep having this doubt that "maybe it was done too soon" I have had clean neuro exam as well, but when asked if an EMG could be done too soon my neuro said "technically" but an EMG has a way of looking back into the history of the muscle. That did not put my mind at ease and actually only added to my anxiety.

Hey Alyoop. Thanks for the answer. How great that you visited Sweden. It is really snowy here now. I would love to visit NZ myself.

I went to the Dr. for the first time in 2008 for feeling like the world was coming down on my feet. From there it has gotten worse two times. Once as mentioned in 2008 and once in 2009. To me it feels like it is MS, but I am scared it is a slow kind of ALS. Last week I had the same kind of feeling I had the years prior. This time it affected my bladder and my throat I think. I cannot clear it like I could last week. My tongue has gone into tremor vibration.

I don't know about ALS but I heard everything does not happen that fast. I still have the Lyme / Erhlichiosis card to play. But it may be to late.

Allweneedislove.
I think you have to look at the statement "no weakness no ALS". Weakness is an important part of the ALS diagnosis, which people keep overlooking. If your EMG is clear then you do not have it. Twitches, as I have said before are not necessary diagnostic of any nasty neurological illness. They are, of course, caused by some harmless anomaly of the nervous system, That's why in the absence if other signs, and/ or symptoms, they are labelled benign. They are extremely common, as you can see from all the threads about them. I cannot say I understand the hysteria surrounding them, or the endless EMGs done with the absence of other problems. If I was you I would not give them another thought.....

Gusflower. It just does not seem to follow the ALS pattern at all. You would have an area of your body, showing increasing clinical weakness, by now it would be obvious. Your symptoms are too widespread.
I really think your bladder is telling you something is up, and needs investigating.
I am presuming you have had your prostate checked by your Dr recently?

I hope you get some answers from your neurologist.
Aly

Thanks Aly, I know I should be listening to a trained dr. who knows way more than I ever could about this but the ugly beast of doubt is hard to kill. He did say that ALS did not present itself the way my symptoms came about just as so many on this forum have. Thanks again for your patience and helpfulness.

Thanks Alyoop, but a month seems so far away. I'm only 29 years old (magic 30 this year) and I have a wonderful life. I do have weakness in my twitches too. But I guess that happens with MS too. Your post comforted me a lot, thanks a lot. Last day's I've been really thinking of taking one day at a time like so many people have written about. Should I go back to my MD and ask for an earlier time. Maybe even call the Neuroclinic and ask that if they get an earlier time I'll be in?

If you have tested positive for Borrelia and Ehrlichiosis both tickborne illnesses then you need to read Burrascano Guidelines and/or ILADS guidelines about Lyme Disease and other tickborne illnesses.
ILADS - International Lyme And Associated Diseases Society

All the symptoms you describe can be attributed to Lyme disease and in it's chronic state can be mis diagnosed as MS and ALS as well as many other things.

If diagnosed and treated adequately on appropriate antibiotics a full recovery is possible, but do not expect much of main stream neurologists over this complex emerging disease.

There is huge controversy because lyme Disease can actually be a mild easy to treat illness and although this and an acute life threatening illness is recognised by our health authorities a chronic illness is not yet recognised.

If you watch/ listen to the recent presentation to the Institute of Medicine recent workshop on the State of the Science on Lyme Disease and other tickborne illness you will see many presentations that show how complex each one of these illnesses are alone let alone when they are found together and doctors are realising that they can work in a symbiotic way thus producing a much more complex illness.

Institute of Medicine of the National Academies Webcast

Prof Ben Luft's presentation is a particular significant one.


If you Google Dr Martz and ALS you will come across his amazing story.
In 2003 he was diagnosed with ALS and given months before he would be in a wheelchair he found that he was suffering from Lyme disease. He was treated by a doctor specialising in Lyme Disease generally called a Lyme literate Medical Doctor LLMD found through ILADS. Martz recovered after months of treatment and as an oncologist and haematologist who had retired due to ill health he decided to return to work after his recovery.

He opened a clinic treating patients with MS, Parkinson's, ALS or as we call it in the uK Motor Neurons and also Lyme patients.

He is due to publish his findings shortly but June last year I attended UK ILADS conference in London and had the privaledge of meeting this amazing man and listening to the presentations of the work he did at his clinic-- quite ground breaking work which will take years for mainstream medicine to get their heads around no doubt.

As a direct consequence of my own personal experience and recovery from Lyme Disease and my awareness of Dr Martz work I encouraged a local man to seek out a LLMD after he was diagnosed with Parkinson's. This man had like myself been diagnosed with Polymyalgia Rheumatica some years previously but I also knew he worked at a local agricultural college so in a more at risk group for lyme. My hunch was right he tested positive for lyme but more importantly on antibiotics for only a few weeks he has already made significant improvements with his symptoms. Fortunately his GP is very supportive and seeing for himself the amazing improvements. This just with oral antibiotics but given long term, something that currently would be denied by most neurologists because the World follows the discredited IDSA Guidelines.

Do your research because doctors are just not upto speed when it comes to this emerging disease.

Good luck.

Unless your urinary symptoms change and you go into full retention, then you should just wait the month. I know it is stressful for you, but not urgent. Now I know your age, you can drop the prostate thing, ha ha.
I have 3 male ms patients all with urinary issues, ( but not presenting initially)so it's common. I will hope that this is not the case with you, and you get some positive feedback from your drs.
Aly:lol:

The only times I have visited this forum have been when reading something about Lyme Disease/Borrelia or other tickborne illness, but each time it concerns me the lack of awareness on the forum about chronic lyme disease.

A useful resource as well as the two links I already mentioned would be chat line Eurolyme
EuroLyme : EuroLyme Lyme Disease Support Group

Apart from the friendly sharing of experiences many of which you will find you identify with you will also find useful research articles in files, one word of warning though because of the high number of posts a day it is worth using a seperate e mail address so as not to mix up with your usual e mails.

I do not want to draw you away from this useful forum but no reason why both can't be of use to some people who suspect borrelia could be involved.

A really interesting read for anyone suspecting they have MS or ALS or any Neurological illness are the lectures by Microbiologist Tom Grier who diagnosed with MS eventually found it to be Lyme disease.
These lectures 1,2,3a,3b and 4 can probably be found in many areas of the Internet but because I do a blog on Lyme my easiest access is on that blog, scroll down the right hand column past many other interesting links until you find them highlighted.

LOOKING AT LYME DISEASE

You will be surprised at the research that has previously found spirochetes associated with MS and Lyme Disease all currently po poohed as fashions have changed in favour of supressing our immune systems rather than seeking the cause of these symptoms.
I do have the references for all his research work but because there are over 100 pages I would have to send them on a request only basis.
Apologise for the highlighting and colours of my posts but done to help those with Neuro lyme who have difficulty reading plain print.

It is very important to exclude pathogens as a cause of neuro symptoms or other symptoms before using steroids something which is not currently being done properly (my own experiences being a case in point), clearly with Borrelia by using steroids the bacterial infection is allowed to progress whilst appearing to help temporarily as it suppresses the symptoms of inflamation.

Alyoop as you are involved in Neurology and research you will find this extremely interesting.

I don't think Lyme is acknowledged as being in NZ but as Borrelia is carried on birds and is found in many of your neighbouring countries I think you will find that you will not be an exception despite what your health authroities might believe.

Interesting developments currently in Australia where Borrelia was denied by it's health authroities excepting from overseas infections but a recent case is making the headlines Karl McManus who had MN type illness following tick bite was on autopsy found to have Borrelia, now further tests are being done in labs around the world to confirm this. This has been organised by his widow in order to try and get the health authorities there to accept there is Lyme in Australia. This website for information on Karl.

Karl McManus Foundation for Lyme Disease Research & Awareness

Sorry I digress but do your research and don't be fobbed off by doctors who have not done their research but are being swayed by outdated information.

Thanks Joanne. Unfortuneatly in Sweden we don't have Lyme doctors. I would have to go to Germany or somewhere else to get an appointment. In December I've witnessed the worst progress in my condition in the three years I've senced it.

- Breathing problems. Waking up with numb hands and fingers.
- Sensation of throat narrowing
- Difficulty swallowing
- Difficulty to clear my throat
- Difficulty to pea, no sensation of urge.
- Tongue fasculations

I am thinking of going straight to Germany. I can't stay at home and just wait.

Gusflower said:

- Breathing problems. Waking up with numb hands and fingers.
- Sensation of throat narrowing
- Difficulty swallowing
- Difficulty to clear my throat
- Difficulty to pea, no sensation of urge.
- Tongue fasculations

All the above and many more were my symptoms except the need to constantly urinate day and night they were mostly my minor symptoms it was with me weakness and pain but the stiffness was all over body on waking actually feeling rigid and so painfuil to flex every joint before able to move, all gone now thank god on months of antibiotics.

I am thinking of going straight to Germany. I can't stay at home and just wait.

Click to expand...

There are one or two good LLMD's in neighbouring countries to you but I am in touch with a fellow sufferer in Sweden who is one of the most knowledgeable about Lyme on Eurolyme forum well worth your while 'talking' to him.

DO NOT JUST DEPEND ON WHAT YOUR NEUROLOGIST SAYS WITHOUT DOING MORE RESEARCH ON LYME.

Thanks Joanne. Can you give a link? It really feels like the muscles in my throat are gone. I can't clear my throat at all as I used too. I had the problem on the right side before and now it is spread to the left side also and I can just manage a small throat clearing in the middle. :S