Ppms?? I am desparate.....

[rogier1973]

Dear people,


First of all nice that I am here on this forum. During the last years (about oktober 2015) I have visited various neurologists (3) with my complaints. Mri's indicate 2 lesions in the frotal lobe but these are not specific for MS they say to me.


Now I have had also swallowing problems, the food does not go down so well. I have also many problems (muscles pain, muscle tightness legs) who are PPMS-like , i think the neurologist are wrong with their answers that they say it is not MS. I had no lumbar punction, was not necessary the said. I am desperate now......what to do?


Sorry for my bath Englisch.....greetz

[SNOOPY]

Hi rogier1973,

Many conditions, some medications, vitamin/mineral deficiencies and mental health disorders can cause symptoms similar to MS. There is no symptom exclusive to MS and all other possible causes for a person's symptoms need to be ruled out.

Brain lesions can be caused by numerous things and is not necessarily specific to Multiple Sclerosis. You could always ask your Dr. to do a MRI of our spine, MS can effect the spinal cord, and is a test that would be done before a Lumbar Puncture. There is no single test, by it's self, that can give a definitive diagnosis of MS.

For swallowing problems you should see a ENT (Ears/Nose/Throat) Dr. Muscle pain/tightness doesn't indicate Primary Progressive Multiple Sclerosis, anyone with MS can have this symptom. This is not exclusive to MS.

There is a diagnostic criteria for Multiple Sclerosis: https://www.nationalmssociety.org/Na...sdiagnosis.pdf

[Myoak]

Very good thoughts from Snoopy.

Is it possible for you to see a neurologist who specializes in MS?

Also, you may want to investigate LDN; there is plenty of info about it on this site if you are interested. Some people with MS using LDN believe it helps.

Of course, in keeping with this thread, stem cell treatment has often worked spectacularly well for those fortunate enough to have it available. But sticking with reputable clinics with established safety protocols is critically important, IMO. Best to you!

[pennstater]

Snoopy gave great advice. Definitely see an ENT doctor. Even if you do have MS, you shouldn't assume there are no other causes for symptoms you have. So an ENT could rule out structural issues or other diseases.

By the way, many neuros no longer feel a lumbar puncture is necessary to diagnose MS. You should read the McDonald criteria that is the standard for an MS diagnosis and become familiar with process.

Also, why have you jumped to PPMS? Most people are diagnosed RRMS first with designation changed to PPMS based on absence of defined relapses with continual progression.

[rogier1973]

The reason why I think that is because I have a lot of complaints that PPMS patients have. In addition, I have the disease alopecia areata, also an autoimmune disease. And I still have the lesions in my head ... and I go back slowly.

[SNOOPY]

Multiple Sclerosis is a disease of the Central Nervous System(CNS) which includes the brain and spinal cord. Multiple Sclerosis is a Neurological Disease that is believed to be autoimmune (Theory.

Alopecia Areata causes hair loss, MS does not cause hair loss.
https://www.aad.org/public/diseases/...lopecia-areata

And I still have the lesions in my head

Brain lesions can be due to numerous things, including, but not limited to, migraines, vitamin deficiencies, other conditions and aging.

I have visited various neurologists (3) with my complaints. Mri's indicate 2 lesions in the frotal lobe but these are not specific for MS they say to me.

You have seen 3 Neurologist who have told you the 2 brain lesions are not specific for Multiple Sclerosis.

There is no reason to suspect PPMS. The symptoms those of us with MS experience is not base on what "type" of MS we have.

[pennstater]

The reason why I think that is because I have a lot of complaints that PPMS patients have. In addition, I have the disease alopecia areata, also an autoimmune disease. And I still have the lesions in my head ... and I go back slowly.

The same symptoms that appear in PPMS can also appear in RRMS/SPMS if the cause is MS. The distinction is made once a diagnosis is made and how/if the diseae progresses.

Brain lesions in MS tend to be located in specific areas and also may have characteristic shapes. This could be the reason the neuros don't suspect MS.

I do strongly recommend seeing an ENT. And with a neuro, rather than bring up MS, ask if a spinal MRI can be done to see the cause of the numbness and stiffness you are experiencing. Push for testing to explain the symptoms.

[rogier1973]

Thanks for your answer!